Arthrofibrosis (from Greek: arthro- joint, fibr- fibrous and -osis abnormality) is an inflammatory condition that leads to the production of excessive scar tissue in or around major joints. These joints can include the knee, shoulder, ankle, wrist, and hip.
Arthrofibrosis can be the result of surgical complications or initial injury to the joint. Infections and/or bleeding into the area are believed to be major causes or contributing factor involved in the disease.
Arthrofibrosis is one of the major complications of ACL surgery and is one of the most difficult to treat. Whatever the cause may be, the excess scar tissue limits range of motion (“ROM”), functionality, and can be painful and debilitating.
Specialized care is required in the treatment of Arthrofibrosis, and only a handful of orthopedic surgeons in the world have a significant amount of experience treating this condition.
The Arthrofibrosis Foundation website was created to provide a resource of information, a community of support, and the financial assistance needed to help patients receive the care they deserve.
I think I have arthrofibrosis in my left knee. I need to find a doctor in Florida, preferably near West Palm Beach, who can do arthrofibrosis knee surgery. Any ideas?
I live in that area and had 3 surgeries here in FL that I regret. I ended up going to Ohio to see Dr. Noyes and Dr. Erlichman. If I could do it all over again I would of had surgery there in the first place. I would never see a surgeon who doesn’t specialize in arthrofibrosis after everything I’ve been through and learned from it,it’s not worth it and causes more problems in the future.
i am suffering with arthrofibrosis of the left knee. I have had a total knee replacement, manipulation, and a total knee revision. I have been dealing with this issue for over a year. I still am in pain and have lack of motion. Looking for a specialist/help in the Minneapolis area.
I have had two TKR on my left knee and I have severe arthrofibrosis and my surgeon basically said there is nothing he can do and my range of motion is so bad and the pain is so bad that I asked him about an above the knee amputation to which he said no way and told me the only thing he could do for me was another TKR which would be the 3rd one and I said no way and I do have a ton of scar tissue per the CT Scan but he said no to surgery because it would just cause more scar tissue. I walk with a permanent limp and use a cane I no longer can sit in the back seat of cars because i can’t bend my knee. I have serious limitations for everyday life, I am also needing a TKR for the right knee and I will not do that until I find a doctor that can help me with my current situation with my left knee. I live in Phoenix AZ so if you have any recommendations that would be great. Thank You
Jenn Spencer
I am in a similar, yet less intensive situation. Almost 1 1/2 years ago, i had a TKR, resulting in chronic inflammation, very limited ROM and lots of pain. Months later, this was followed by an MUA, months later an Arthroscopic Debridement and months later by an Open Debridement. With each successive procedure my condition worsened. My Dr. said “you lay down a lot of my reading led me to understand that 6-10% of people having knee replacement develop excessive scar tissue ”, described as Arthrofibrosis. Most of the medical articles I read, said that doctors don’t typically report this because of the negative image it presents about replacements.
I went to the Hospital for Special Surgery in Manhattan, for a second opinion, HSS, being the #1 hospital worldwide in Orthopedics. The advice I received there was to have a revision to a hinged replacement for a number of reasons.
Are you familiar with the supposed advantages of goung to a hinged replacement? Had your surgeons offered up this alternative? In the procedure they remove your tendons, which is where a considerable amount of scar to accumulates. The tendon function is then replaced by the hinge. This surgery as well can cause more scarring, so it is not without it’s potential downside. If there was a pre replacement test to see if one’s immune system was prone to this outcome, i would never have had the replace. At HSS, i was told that they have developed such a test and that it will be announced in a few months. My heart sank when i read your story. Best of luck. Let me know if a hinged replacement option was given you.
I need help with my knee… in 2020 I had a total right knee replacement… revision 2021 by the Core institute. Now I’m seeing a pain specialist for over a year. It’s arthrofibrosis… I lost my job, and now I’m on SSD. from this knee replacement surgery. I just want a dr that will help fix this. PLEASE!!!!
Do NOT choose Dr. Henry Finn in Chicago. I had high hopes for Dr. Finn to resolve my very painful, and debilitating knee. I was told he was one of the best. Horrible! he went on vacation after my surgery. I had no contact from Dr. Finn while I was suffering with severe pain. I had the original right knee replacement from a doctor who has NO idea that “ARTHROFIBROSIS” existed. Many orthopedic doctors had no idea what Arthrofibrosis. The Dr who did the original knee replacement told me not to be so DRAMATIC,as he took out the staples in my knee I was in excruciating pain, I actual saw stars as each staple was removed.Ive heard people see stars as they close their eyes while going thru horrific pain…and I did . I had 2 revisions,and neither worked . I went to many alternative doctors/pain management physicians,etc. for this horrible condition. I lived in NJ and had surgery in Chicago – Dr Finn There are two other facilities I researched was The Steadman Clinic, and Dr Finn s office returned my phone call ,so I went with the first who contacted me.If you are able to travel to NYC…I would highly recommend Dr David Mayman ( he also did my hip replacement,however my body also had scar tissue after that surgery). The surgery went fine, and Dr Eytan Debbi. They both tried their best to help my issue.Perhaps they could help you. Now I would need a left knee replacement. But,what most probably would happen is SEVERE SCAR TISSUE,lack of proper movement,and horrific pain.In researching amputation I understand that even if you have an amputation,you might still have horrible pain. Perhaps try Steadman Clinic…they want you to 3-4 weeks. on occasion I go on this Arthrofibrosis Foundation site …hoping that someone knows if a cure for this horrible condition Sorry for such a long text. I cannot remember the other well-known arthrofibrosis specialist group that I contacted.(Steadman group is in Vail,Colorado.,but there is another in a different state who also specializes in Arthrofibrosis. I sent my MRI s etc …but I cannot remember the group.WISHING you the best of luck in finding a physician to help you.I know what you’re going through!!!(ps…I went to an orthopedic Dr in the area I ve moved to,explaining my knee background,pain,etc etc.Ijust wanted my knee drained and an injection
I know there s no cure. This well-known surgeon stood in front of me and boldly told me that he would NEVER touch my knee.Understandable,but that’s truly a horrible way to speak to someone who sought your help,and who is in extreme pain.
Dr Noyes is one of the names I couldn’t remember earlier
I have knee arthofibrosis from a prior tibial plateau fracture with internal fixation, tkr, and tkr revision. Has anyone heard of artholysis surgeons using adhesion barrier material to prevent future adhesions?
Has anyone had any results good or bad from FSM (frequency specific microcurrent) treatments for arthrofibrosis? Thanks.
I too wanted to amputate my knee due to horrific Arthrofibrosis. I was told that some people who have an amputation,can still experience Phantom Pain! I have been dealing with Arthrofibrosis for many years…local doctors, Dr.
David Mayman(Great doctor)at HSS.nyc and Dr.Henry Finn in Chicago,(NOT!!) .It s still awful,difficulty walking up & downstairs and sleeping and..I m unable to get rid of Plantar Fasciitis for over 1 yr.Constant tingling in my foot, Cramping in my calf,uggh. No relief…very upsetting as you all know. Starting new PT tomm…with no guarantees at all, the new PT is going to Laser my knee ….I can’t remember if I tried that previouslyb ,but I ll try anything ( I use to be a very active individual,but as you all know there are serious limitations of Arthrofibrosis. take care!
Laurie,
I basically have the same situation as you with arthrofibrosis in both knees after double knee replacement. Have you had the laser treatment and have you any successful results?
No results for me with Laser treatment. Going to PT now…laser not helping hope it works for you …thx
Hi everyone, I’m four years out of TKR with still active AF. Still a hot knee despite a very anti-inflammatory diet and careful, careful moving. Sleeping is a challenge bc my knee heats up when I put a pillow between or under my knees to help my back or sleep on my side. I think this is contributing to my active AF. Do you have this same problem, and what do you do to help? I’m thinking about trying to find a good product that will keep my knee a little cool during the night. Any recommendations appreciated! Thank you.
After one knee surgery, the doctor prescribed a cooler with ice and it circulated cold water.
I can’t gain weight because my knee burns all day and night.
I’m wondering about having it amputated.
Oh Jennifer I’m so sorry for what you’re going through. I can relate!! Hang in there. This is AWFUL and so exhausting. You are not alone! ❤️
DO NOT AMPUTATE!
I’ve had a TKR and MUA and then knee revision surgery. Nothing worked. I have developed arthrofibrosis but will not give up. Keep searching for answers. I saw Drs. at HSS and they said this is difficult to treat but a hinge may work in only 50% of the cases. My next stop is the Mayo Clinic in the spring.
What happened? Any good news?
Can anyone help me with some advice? Does anyone have or can tell me some more information on Dr. Noyles? I was going to make an appointment with him to see if he could help me with my issues. Here is a little back story on me…… Im 45 years old and in June 2023 I had a TKR. This was my 6th surgery on my right knee. It all stated when I had a complete resconstruction done in 2001 and then surgery after surgery. About 2-3 years ago I was seeing another doctor in my area and I kept telling him about my severe pain etc and all he wanted to do was keep giving me cortizone shots, like every month, uh…. no. Thats no helping my situation at all. The doctor told me that my knee (which I knew) was complete bone on bone and deterioating, but I needed to make it until the age of 50.
Fast forward to 2023, I went for a second opinion, (my husband hates seeing me crawl up the steps crying in pain to go to bed because I cant walk) I saw my recent doctor. Now this doctor is the on who did surgeries 2 & 3. They said that the bottom part of my leg at the knee had shifted 1/8 to 1/4 over and that would be one reason for the severe pain in walking and my foot issues etc. So i needed the TKR. Did the replacement surgery, okay. started PT right away, but immediatley started noticing problems. I coudnt bend. I work for the Fire Department (Administraive) and I know how to do PT (not to mention ive done this a few times before..haha) so I know the routine. But no matter how long I rode the bike, how many squats I did, how much streatching/bending I did it was to no avail. I think it was after I had my manipulation that I finally reached 95 degrees. Keep in mind that was the day I had it done, and then every day after slipped further and further back in degrees.
Today, I cant walk more than 10-20 steps before the severe pain kicks in and I start my weeble-wabbling and leaning on the carts to make it trough a store, cant bend to go up or down steps, cant bend my leg past 45-50 degrees. I told this to my currect doctor and his response to me was and I quote “My Expectations are to high”. I thought my husband was going to hurt the doctor. I started to cry, i mean I dont want to run or anything I just want to walk normal, bend my leg and have no pain or sharp shooting pains that take my breath away.
So I requested all of my records to get a second opintion and thats when I noticed the word Arthrofibrosis. This has never been talked of or anything. So I did my research and found Dr. Noyles.
So long story short, what is it like to see him? Do you really have to stay there for 4 weeks? Do they have somewhere that you stay at for little to no charge? Do you PT everyday? Im just trying to see if my insurance will cover this and how do we finiacially afford this?
Any help would be greatly appreciated.
Hi, I worked with Dr Noyes and team after severe arthrofibrosis after a TKR. The reason you should stay there for four weeks is that the pt is essential post op. The scar tissue will grow back to some extent so it is really important that you keep it stretched as it comes back- but not push it too far or you will cause irritation and more scarring. Learning how to do the pt protocol is essential. My surgery with Noyes was a couple of years ago now but my knee is still great. I’m back to cycling etc. No pain. I still do home pt 3x per week to keep it stretched out, but only for, say, 45 minutes or so per session. I’m at 135 flexion ( was previously stuck under 80). So hang in there. If you put in the work ( and it is a relentless amount of work at first) and do precisely what the pt says( they wouldn’t let me cycle fot six weeks which was so frustrating but it is all about not pushing too hard at first), there is light at the end of the tunnel.
I’m wondering if you are on any Rheumatology drugs still from Dr. Noyes such as Methotrexate?
Hi Renee! Many of us posting on here have had similar situations with doctors that do not understand what to do if a patient has a problem after TKR – Dr. Noyes and his PT team do! Yes you will be required to stay there and work with his physical therapists, but I’m telling you that is the game changer. I went to see Dr. Noyes last year. I was in constant pain and could only bend to 65 degrees. I am now 4 months out and am at 125 degrees – pain free. Their regiment of surgery, PT and working with a rheumatologist was exactly what I needed. I was there 6 weeks, but I’d do it all over again. I have my life back at 60 years old.
Thank you for sharing your story. I am wondering how the logistics worked for you being post op and being in Ohio- as I am living in MA and will need to stay there should I choose this facility. Glad to hear your doing so well!
I live in the Boston area. Prior to my left knee TKR in 7/2023, I had MCL reconstruction, two scopes and an ACL reconstruction. Never had a problem with these surgeons that were done many years ago. After my TKR (done at NE Baptist), I developed severe arthrofibrosis. I could only bend my knee to 45-50 degrees.PT had never deal with anyone who had scar tissue. MUA in 9/2023 wasn’t successful. Like you and everyone on the forum, I was very frustrated. In 2/2024, TKR surgeon recommended a knee revision to remove scar tissue. I accidentally ran across the Arthrofibrosis Foundation website and this forum. I set up an appt with Dr. Frank Noyes in Cincinnati at the end of Feb. and flew out for a consultation. Unfortunately, I wasn’t a good candidate. He did write up an extensive report on what the issues were and what he thought should be done. I also met with his PT people, who were incredible. Spent 1 1/2 hours with them. I was having a leg extension issue and they prescribed home exercises which helped me get extension to 2. I ended up finding different surgeon in Boston whose recommended surgery was similar to Dr. Noyes. I had that surgery in 5/2024. My knee is better but not where I want it to be. I have scar tissue but significantly less than before. I’m at 70 degrees normal and 80-85 after PT. My current surgeon is not recommending another knee revision (open lysis of adhesions procedure) because of potential infection. If knee with scar tissue gets infected, it’s a potential serious problem. I’m glad I went out to see Dr. Noyes and his PT people. Not sure what my next steps are other than continuing PT using low load, high duration techniques. Good luck.
Arthroplasty
Finally after 3 years of living in agony…….
My patella was too low and it caused my quad muscles to be covered with scar tissue and muscle was in a ball on top of my thigh.
The doctor said if patella is too high, this happens to shin.
Waiting makes it worse, so don’t give up.
Ten x’s more painful than TKR- he had to cut ligaments (and muscles) to stretch out muscle.
I’m still in a brace, but changing my diet helped- I react to histamines. From Mast Activation Cell Disorder from EDS.
If I don’t get relief/ ROM- I will have to have my patella removed and ligaments replaced with grafts.
Insurance is making everything such a battle. It’s crazy because I have good teacher PPO insurance, but they deny everything.
Living in pain is not a reason (anymore) for medical coverage- it’s inhumane and we should have the choice for medical euthanasia. Animals are treated with more compassion than senior citizens. (I’m 62)
I had to pay out-of-pocket for OxyContin and it is not helping at all. It could be from EDS or “they are” just selling a placebo.
Also, surgeon found something (?) in my knee cap causing aggravation.
All the exercises and PT was a waste of time.
Haven’t read op report yet, so I may have confused some information.
Hi all, I just tried to make an appt with Dr. Steven Singleton but was informed that he has retired. Does anyone know if someone has taken over his arthrofibrosis practice in the DFW area? I am located in CA, I have tried to make an appt with Dr. Eakin but cannot get in for several months. I am hoping to be seen sooner by a specialist.
hi everyone I am suffering with arthrofibrosis of the ankle. I came dow with this condition after multiple surgeries to address a ruptured Achilles. Now can’t walk for long distances, or bend my ankle much at all. After a day on my feet my foot feels swollen and buzzes. I am 51 with teenage sons and just want to be mobile again. As a teacher and coach I am unsure how I am going to live going forward. I can’t even wear sneakers. All I can wear is Oofos sandals. I have moved past most of the depression but I have a hopeless view of the future with my wife . I often think just cutting the foot off may make me , ironically, more mobile…. Any suggestions?
Hi Paul, you’re not alone and I am on a similar path. Some days I do feel like I want to cut off my lower limb.
I developed arthrofibrosis after ACL reconstruction in Jan 2022 and have been in increasing pain ever since. A recent arthroscopy to remove scar tissue made it worse – along with over aggressive PT and pushing through the pain rehab. Now that I know what is going on I’m trying to navigate as best I can.
I’m trying a treatment called nerve hydrodissection which is basically ultrasound guided fluid injections to break up the pockets of scar tissue and calcification. Time will tell if this works, but having another surgery just isn’t an option I want to think about. I’ve also started an anti inflammatory diet and I’m taking magnesium, curcumin and fish oil. Along with this gentle continuous movement. Mostly static and stationary bicycle. I can only stand being weight bearing for about 30 minutes at a time and then the throbbing numbness along with shooting pains and bone on bone feeling gets too much.
Depression and anxiety are something else to manage. What also helps me is spending time doing all the things I never made time for when I was super active – skateboarding, snowboarding, mountain biking etc etc. letting go of that life is hard, but I still have a future. It’s hard and I really empathize with you, I hope some of this helps. Take care and don’t give up!
p.s since all I can do is just deal with my pain…I forgot to mention that I had a hip replacement during COVID, and I also have AF in my hip incision area.
MY SINCEREST APOLOGIES TO THE FOUNDATION, AND PEOPLE READING MY “BLURBS”. I OFTEN WAKE UP @ NITE AND GO ON THIS SITE, HOPING THAT SOMEONE MIGHT HAVE POSTED SOME MIRACLE CURE/PROCEDURE TO HELP DECREASE OR GET RID OF AF. My apologies are related to how poorly I wrote my “blurbs”….typos and repetitive comments. I didn’t notice my errors until just now. I guess I just get so horribly upset when I write about this horrible condition that has effected my life and MANY OTHER PEOPLE’S ALSO, and I didn’t proofread. Thx. again for listening. I am now 68 year old. My first TKR was many years ago. Not only am I in pain 24/7…I worry about when I get older … thinking if I can’t keep up with some exercises EX.just walking, what will happen to my knee/condition. I don’t know how much worse it wilL become. It’s VERY concerning. thank you.!
It’s Laurie, again. Robin, THANK YOU for you suggestion to see Dr. Noyes. After my first TKR, HE was on my list of doctors to see. I sent out all my records, etc. Unfortunately for me, Dr. FInn’s office contacted me first so I went to Chicago for a consult. However Dr. Finn DID NOT HELP MY Arthrofibroisis issue. He actually made it worse!!!! ) I contacted my present surgeon/. -Dr. Ethytan Debbi, @ HSS. I met him last year. he is VERY nice. He highly suggested, no more TKR!!!. Just recently I explIt’s Laurie, again. I contacted my present surgeon/Dr. -Dr. Ethytan (sp) Debb, @ HSS. I met him last year. he is VERYy nice. I explained my symptoms: My two legs are totally different sizes. My right knee, with Arthrofibrosis, is HUGE, (that knee is always, warm OR HOT. Every day/nite/week/weekend, I deal with pain. For over a year I’ve had Plantar Faciiitis. Many ears ago, I I went to my podiatrist, who treated the Plantar Fac nv itis & it went away. Unfortunately it came back, even worse. I sought help from physical therapy and being consistent with at home PT exercises. My toes/legs were cramping on a regular basis. With all the swelling/damage/discomfort/ increase in blue veins. . It looks like my leg got large. I contacted the surgeon’s office asking them what else can I do decrease the discomfort. I spoke with my newest surgeon’s staff. They told me that I should go to a Physciatrist. I called several Physciatrists and was told that they don’t treat the symptoms I have. So…..if anyone can suggest anything that I can pursue–specialty dr or ANYTHING else, PLEASE LET ME KNOW. I know there might not be any help “out there”, but I just thought I’d ask. My right knee is is HUGE, (that knee is always, warm OR HOT. Every day/nite/week/weekend, I deal with pain. For a year I’ve had Plantar Faciitis. Many ears ago, I went to my podiatrist, who treated the Plantar Faciitis and it was resolved. Now my cramping, and etc.,will not go went away. Unfortunately it came back, even worse. I sought help from a physical therapist and being consistent with at home PT exercises. My toes/legs were cramping on a regular basis. With all the swelling/damage/discomfort/ increase in blue veins. . It looks like my leg got large. I contacted the surgeon’s office asking them what else can I do decrease the discomfort. I spoke with my new surgeon’s staff. They told me that I should go to a Physciatrist. I called several Physciatrists and was told that they don’t treat the symptoms I have. So…..if anyone can suggest anything that I can pursue–specialty doctor or ANYTHING else, PLEASE LET ME KNOW. I know there might not be ANY help “out there”, but I just thought I’d ask.
Laurie, I used Dr Mayman at HSS for my second knee replacement , which went well. Unfortunately I had a freak accident 8 weeks after, and ripped my patellar tendon clean off the shin, taking a chunk of my shin with it. As my leg collapsed, I broke my other leg in the fall. Which meant I was wheelchair bound for months! The repair was iffy- I had to go into an ankle to hip cast for four months; ironically to PROMOTE scar tissue formation to hold the repair in place. By the time I got through that, my leg was completely frozen in place. Didn’t bend AT ALL. That said, Dr Mayman stuck with me and agreed to do a subsequent scar removal surgery six months after the accident. I then followed all my notes from the “ Noyes PT protocol” ( which I learned after I had arthrofibrosis in my other knee) with much better than expected results. They had prepared me for significant and permanent loss of function but that didn’t happen. I’m at 110 and will likely never get any farther, but I am cycling and walking without a cane. You wouldn’t even know I had an issue unless you saw me going down a flight of stairs. Yesterday, I did an 18 mile bike ride. But net net, Mayman has stuck with me through thick and thin, and still checks in with me to see how I’m progressing. I highly recommend him. Very dedicated guy.
Hello Robin
I live on the East Coast and recently saw a MD at HSS- orthopedic surgeon. He referred me to two other surgeons. I asked about anyone with specialty in arthrofibrosis and I was told “anyone should be able to do this”. I Know that not to be true from my research re arthrofibrosis- as the surgeon, post op recovery and associated key players such as PT and sometimes, medications are critical in recovery. You mentioned Dr Noyes protocol. Can you speak to his a little more please? I know there is a protocol post op re PT etc but how about med use pre or post op? I have tried steroid injection to knee and it didn’t help. I also tried oral steroids and without much help either.
Did you feel Dr Mayman was helpful? Skilled in arthrofibrosis? How is your knee today? How are where did you complete your PT after surgery for fibrosis?
I could consider going to Dr Noyes however I would have to travel alone and being there post op by myself may be challenging respective to navigation and should there by any complication.
Thanks and Any additional insight would be most helpful.
I’ve had Arthrofibrosis since my last knee replacement. 2 revisions later….no help at all. someone how my brain must have decided to comprehend my physical disability and put the horrific pain, upset and concern of my very, very, damaged knee, into a back compartment. I do have pain 24/7…but as some of you know, at this time, there is nothing we can do to help this horrible state of dealing with Arthrofibrosise! It’s been so many, many, years since I had first surgery that I thought would be my saving grace……BUT IT WASN’T …my pain is terrible and does not “go away”. some days I just want to (as they say), jump out of my skin. If only I could. I main issue now is: theJoint is very angry, because I walk, do some yoga, bike -(using the electric component when going up hills), etc. etc. My “bad” knee (although my other knew is damaged…I WILL NOT HAVE SURGERY….I know my body WILL NOT ACCEPT the complex surgery. I just want to find a physician or protocol – miraculous way I can decrease the swelling of my entire leg. The skin on my “Arthrofibrosis” knee is stretched — I think to the furthest possible. My skin is very, very shiny . my leg from the grown area to my ankle is VERY VERY swollen! VERY UNCOMFORTABLE…especially in summer heat conditions. It’s impossible t to feel comfortable, or find pants or shorts to that fit. My whole right knee & leg are both huge. Very, very ugly to look at, but more importantly my knee is unable to walk correctly, sit on the floor or ground, and get up again without pain & awkwardness.I keep hoping & praying for a cure for this horrible, confining, painful, condition. (as mentioned above….) My hip replacement relieved my horrific sciatic pain., which was VERY HELPFUL. Unfortunately my body built up scar tissue around the scar. This is painful….walking, sitting, and sleeping, but…..the hip replacement took away the excruciating pain. the I had for 2 years. None of the doctors I went to, (except for Dr. David Mayman), knew what could help. Those doctors tried, but Dr. Mayman diagnosed it and replaced my hip. But still could make a diagnosis is ARTHROFIBROSIS. I hope I live to see/hear the discovery on how to DEPLETE SCAR TISSUE/ARTHROFIBROSIS. If anyone knows what specialty physician might be able to help me with the horrible swelling of my knee & entire leg. ( I’ve had Plantar Faciitus for about a year now. I am rather sure that it’s caused by the swelling in the leg. I went to Rheumatologist many years aga – NO HELP/NO IDEAS! Recently spoke with another Rheumatologist — not able to help me. o
Laurie –
I also have arthrofibrosis. I contracted it after a total knee replacement in March 2023. Please look up Noyes Knee Institute – Dr. Frank Noyes in Cincinnati, OH. They were my answer to prayers. I am actually part of a research group specifically for the study of arthrofibrosis. I fully understand the pain you are going through, but I’m telling you Dr. Noyes is the answer. He is only one of two doctors that specifically deals with this. Along with Dr. Noyes, I am working with Dr. Fritz – a rheumatologist in Cincinnati. They work together as a team to fight this terrible condition. As of this writing I am now virtually pain free. I did have a “revision” in which he removed my scar tissue and then one manipulation. When I first went to see him I was only at 70 degrees. Today I am at 123 degrees! Please look him up!
Robin,
Can you please tell me some more information on Dr. Noyles? I was going to make an appointment with him to see if he could help me with my issues. Here is a little back story on me…… Im 45 years old and in June 2023 I had a TKR. This was my 6th surgery on my right knee. It all stated when I had a complete resconstruction done in 2001 and then surgery after surgery. About 2-3 years ago I was seeing another doctor in my area and I kept telling him about my severe pain etc and all he wanted to do was keep giving me cortizone shots, like every month, uh…. no. Thats no helping my situation at all. The doctor told me that my knee (which I knew) was complete bone on bone and deterioating, but I needed to make it until the age of 50.
Fast forward to 2023, I went for a second opinion, (my husband hates seeing me crawl up the steps crying in pain to go to bed because I cant walk) I saw my recent doctor. Now this doctor is the on who did surgeries 2 & 3. They said that the bottom part of my leg at the knee had shifted 1/8 to 1/4 over and that would be one reason for the severe pain in walking and my foot issues etc. So i needed the TKR. Did the replacement surgery, okay. started PT right away, but immediatley started noticing problems. I coudnt bend. I work for the Fire Department (Administraive) and I know how to do PT (not to mention ive done this a few times before..haha) so I know the routine. But no matter how long I rode the bike, how many squats I did, how much streatching/bending I did it was to no avail. I think it was after I had my manipulation that I finally reached 95 degrees. Keep in mind that was the day I had it done, and then every day after slipped further and further back in degrees.
Today, I cant walk more than 10-20 steps before the severe pain kicks in and I start my weeble-wabbling and leaning on the carts to make it trough a store, cant bend to go up or down steps, cant bend my leg past 45-50 degrees. I told this to my currect doctor and his response to me was and I quote “My Expectations are to high”. I thought my husband was going to hurt the doctor. I started to cry, i mean I dont want to run or anything I just want to walk normal, bend my leg and have no pain or sharp shooting pains that take my breath away.
So I requested all of my records to get a second opintion and thats when I noticed the word Arthrofibrosis. This has never been talked of or anything. So I did my research and found Dr. Noyles.
So long story short, what is it like to see him? Do you really have to stay there for 4 weeks? Do they have somewhere that you stay at for little to no charge? Do you PT everyday? Im just trying to see if my insurance will cover this and how do we finiacially afford this?
Any help would be greatly appreciated.
Renee –
I just happened back to this site and saw your questions. Valid concerns for sure. Although we did have some fights with our insurance company, all procedures were covered. Unfortunately, staying in Cincinnati is at your own expense. The Noyes Knee Institute does not have lodging of their own, but when they left they were starting to work with a Best Western two blocks away for a discounted rate. Please email me at rmhanes1919@gmail.com if you need anything else!
For Hsv-1&2 cure,,.Email_____________ Robi nsonbu ckler11 g mai l…. co m………
After 3 knee surgeries, meniscus repair, 2 TKR i have been left disabled. No one seemed to know that Arthrofibrosis was always gonna stop me. Now I know their is some kind of hope, I’m on a mission to get it fixed. I need to know how to reach Dr. Noyes staff and who of his patients have had successful outcomes?
I am a patient of Dr. Noyes! He was my answer to prayers after being kicked to the curb by the doctor that did my TKR. I am absolutely a success story! Even the physical therapists are thrilled with my recovery. When I first went to the Noyes Knee Clinic I was at 70 degrees range of motion. Today I am beyond thrilled to be at 123 degrees and still progressing through my continued PT at home. I would happily be a poster child (adult) for Dr. Noyes. Their team approach should be text book for all facilities. Check them out!
Has anyone found in Florida a surgeon that follows the protocol or one similar to Dr.Noyes mentioned so frequently here? I’ve had a scope, partial knee replacement, and lysis of adhesions with scar tissue returning.
I’m 47 year old mani had full knee replacement surgery. After surgery I came down with arthrofibrosis in my right leg. I can only bend it 50° or less.
Anybody have experience with bee sting therapy for their knee AF? I was in my garden a few days ago and got a bee sting at the top of my leg, the same leg that has AF. Strangely enough, I’ve noticed a bit less pain and maybe even a little more flexion. Very slight, but enough to make me wonder if it was a real thing. Google says bee venom can help with osteoarthritis.
what is the difference between specialists and surgeons in the practitioner section?
I am going to make appointment with Dr Noyes or Dr Finn
I wanted to get opinion on which dr is better with arthrofibrosis thankyou
I just spent approximately 45 minutes posting a very,very long message regarding my horrible experience with Dr. Henry Finn. because it took me a long time to type the text thatI did, I don’t want to redo it again. if you would like to hear all the reasons why I would not recommend Dr. Finn, let me know and I will contact you. in the meantime, Dr Noyes and Dr. Steadman were my two runner-ups, that I wish I had pursued. Since my severe upset with Dr. Finn. and my surgery in Chicago many years ago, Post Dr Finn I began researching other surgeons. I became a patient under the care of Dr. David Mayman. Dr Mayman is a wonderful, caring, compassionate physician. he works out of HSS in New York City. unfortunately due to all the damage to my knee that incurred, he was not able to help me even know he tried.Dr Mayman did perform my hip replacement, which was successful, however, my body did produce scar tissue. tissue so I have some discomfort but, due to the scar tissue the surgery was successful, but still causes me just comfort. Not many people/ physicians know what Arthro fibrosis involves. The many physicians who are trying to find a cure are wonderful. genetically, due to my background, I would most probably always form scar tissue. therefore, I will never pursue going to have my other knee done and hopefully I won’t be in too much pain. Best of luck to you. If you want to hear the ins and outs and upsets and disappointments that I had with Dr. Henry Finn, let me know and I will rewrite or discuss via phone or zoom. I absolutely recommend choosing another surgeon.
Dr Henry Finn messed me up really bad He performed a double hip replacement on me ,I found out should never had I am totally disabled now
Can you tell me the problem you had with Dr Flinn
This is for my knee.
Looking for arthrofibrosis ortho surgeon specialist ideally with expertise in biologic/regenerative medicine techniques.
I am in upstate NY and am looking for a specialist in Arthrofibosis. I had a right knee TKR 2 1/2 years ago, revision surgery 1 1/2 years ago, four manipulations under anesthesia, more than 100 PT visits, genicular knee ablation, botox in my hamstrings, acupuncture – basically, you name it – and my range of motion is still 85 degrees flexion and -25 degrees extension. So, no more surgery or manipulations. I just need to see if there’s something new out there that a specialist can try.
Of note – the specialist listed in Boston on the Practitioner list no longer works on knees so is not interested in my case.
And the one listed in NYC does not accept my insurance.
Thanks!
Contact Dr. David Mayman, Hospital For Special Surgery, New York City ( I was a patient of his.) GREAT DR…compassionate, caring, thorough….working on trial studies to hopefully find a cure for ARTHROFIBROSIS.
Good Luck !
Hi my name is Devora Santos I’m 50 years old and I have the same problem that u mention with ur TKR
Can you please send me the address or phone number of ??? David Mayman,
Please !!!i can’t Bend my knee at all is like 60 bending range right now.
Dr. David Mayman 541 E 71st St,NY…(6th floor) 212-774-2024…best of luck. I wish I knew of Dr..Mayman prior to going to Chicago- Dr. Finn!
my wife has been suffering from Orthofibrosis since her scope surgery on her left knee over a year ago now. They could not find anything on the MRI that showed damage in her knee. The Dr suspected a torn meniscus. All her symptoms pointed toward a meniscus injury. A scope surgery was completed. All that was found and removed was a very small piece of cartlige under her knee cap. The doctor didn’t sound really convinced that this was the problem causing her pain and swelling. Since the surgery she has had therapy and one manipulation and multiple cortisone injections. All of which caused her knee to continue to swell and hurt. We went to another Dr for a second opinion. He diagnosed her with Orthrofibrosis and said all the therapy and manipulation has just made things worse. He told her to continue therapy but said if she feels any pain stop. Don’t push through any pain. So she has basically been able to do nothing but limp around. Her knee is no better now than one year ago. In fact she says it’s worse.
We are now looking for a specialist in Orthrofibrosis. Without breaking the bank, we are hoping to get her knee back to normal. We live in Utah and so far have not found someone we feel confident can fix her knee. Any Dr referrals or advice would be greatly appreciated. We just want her to get back to normal again. She is only 57 yrs old and in good health.
Is there a diet to reverse arthrofibrosis?
I had horrible arthritis after my first TKR. had it redone less than a year later. Had MUA’s, arthricopies. Etc. 8 procedures in total on same knee.
Today I am mostly pain free and can extend 0-120.
Two things—found to have staph infection and last procedure was cleaning it all out and putting me on antibiotics for a year.after IV antibiotics post-op.
Other thing was I’ve lost 55 lbs on Weight Watchers. I strongly feel this has contributed to my exceptional results after years of pain and procedures.
I have had two total knee replacement.l on the right. The last one was done, 2021. My knee is stiff. I live in Southern California. Could you provide doctor names in Southern California. Thank you!
Hi Nancy. While searching for myself today I came across a Dr Getelman in Van Nuys/Thousand Oaks. Reviews were very good.
looking for a doctor in Central NJ who specializes in treatment of arthrofibrosis following full knee replacement
Any recommendation of an arthrofibrosis expert in Minneapolis, MN? I had ACL reconstruction surgery in March and developed arthrofibrosis about four weeks later. I had a second surgery to “clean out” my knee and do a manipulation under anesthesia, which hasn’t seemed to do anything, in May. I’d appreciate any recommendations.
I had my surgery today with Dr Matthew Abdel at Mayo in Rochester, MN. In hospital now. He is the leading works expert on arthrofibrosis of the knee. He has a strict protocol. This is my fourth surgery after a simple meniscus tear to replacement and now this. I wish I’d gone to Mayo right from the start!
I am looking for information r/t arthrofibrosis following wrist replacement. It is a new procedure (FDA approval in late 2021) and I don’t believe that prior patients (with my surgeon) have had an issue related to the overgrowth of scar tissue. I have OA and had spent 10 years in a cock-up splint due to pain. I had complications with ROM as soon as I came out of the splint and MUA was unsuccessful. The surgeon went in to debride finding sheets of scar tissue above and below the implant. I have recovered extension, and I have inversion/eversion (dart throw positions) but I have almost no flexion (about 5 degrees). I no longer have any pain. Wondered if anyone had thoughts for intervention.
I had a total knee replacement November 29 2022. My ROM was great for 2 days and then the nerve block wore off and my knee stiffen up. I had manual manipulation done 3 weeks ago and I am only at 80 degrees. I have pain in my knee and Rt butt cheek. Does anybody know of a specialist in Florida that deals with AF?
Kris Alden MD, he just opened a practice in Florida. He trained at John’s Hopkins and Mayo and is one of the best
Is there a doctor in San Diego that is an expert in Arthrofibrosis? I had knee surgery more than 2years ago and my knee feels like there is a band around it and it builds pressure on the right side of the knee when I walk.
Are there any arthrofibrosis surgeons near Atlanta, GA? I had a knee replacement, a MUA, and a revision knee replacement all in the last 2 years on my right knee. My knee is stuck at 10 degrees extension and 90 degree flexion. Desperately seeking help.
Looking for a doctor in the austin area to treat my arthof
Fibrosis.
In search of a physician in Pennsylvania who treats arthrofibrosis. I’ve had meniscus surgery, knee replacement, manipulation, revision, manipulation, ruptured bakers cyst, revision and now a knee filled with fluid and scar tissue. I desperately need someone who specializes in it. Thank you
I too am looking for an athrofibrosis doctor in PA!!!
Please helppp!!!!!
My 18-year-old daughter has been diagnosed with arthrofibrosis in her knee joint. She had two knee surgeries, the second of which resulted in a staff infection, and four follow up surgeries to repair the damage. She has very limited mobility and has big college dreams. We live in northern California and she is a currently a patient of the Stanford system. Any advice on a doctor? In Northern California that is an arthrofibrosis expert? I want to help her get her life back and send her on her way to college in the fall.
Dr. Colin Eakin in Palo Alto is a recognized expert in AF. I have met with him a couple times and trust his expertise.
Is search Doctors on the west coast that deal with Arthrofibrosis. Have had 5 TKR (right knee) with serve scar tissue build up on lower Patella. Pain, mobility issues, rom 25 degrees. Seen regular ortho. doctor no help.
Hello,
Did you find a doc on the west coast?
There is a doc in Cincinnati.
Does anyone know of an arthofibrosis specialist in the vicinity of Palm Beach area?
postop 9 weeks after AVULSION PATELLA Fracture. Repaired with lateral screw & then tension band around “equator” of patella. Unconventional per research, but I was told my patella (laterally placed normally) & comminuted fracture warranted this repair. Now at 9 weeks, I am onyl at 70 degrees past 2 weeks. I am 52 and have always been athletic and active (work out average hours a day & stand on my feet 12 hours a day with heavy lifting & walking). Considering a maniupulation. Anyone in SC area and have recommendations on manipulation at this point and person who is successful? I do not want to damage my knee more or cause a fracture at a bone. I was told all ligaments are intact.
Duke University is probably the closest location to you that has expertise in treating Arthrofibrosis. Not very close, I know, but you want someone who has tremendous experience and great results and Duke is one of only a handful of facilities in the U.S. that meet that criteria.
D Duncan would you please be specific about exactly WHO at Duke is well versed in treating arthrofibrosis successfully? I’ve followed up on other posts about Duke (called their offices and spoke with staff) and got answers that the people promoted were not in fact arthrofibrosis specialists. Do you personally have experience with the Duke doctors you’re writing about? Looking forward to your reply.
Also very interested in specific doctors at Duke.
Hi you guys. Been a while. I am at five weeks post op after a TKR with David Mayman on my right knee. I am pleased to report that I am at 120 flexion and zero extension already without assistance. I am following the same pt protocol that Dr Noyes’ team used after my scar removal surgery on the left knee last year ( very frequent, almost non -stop sessions but ROM work only; no weights or bands at all. Using the Flexinator religiously). Still on Meloxicam, ice and pain meds but pain and swelling is starting to improve. So far so good! For me, at least, it only reinforces my view that the PT protocol is key to keeping the scar tissue from binding. My left knee ( where I had the bad arthrofibrosis that Dr Noyes repaired last year) is at 127 flexion and zero extension without assistance. Not too bad considering I was at 85 on that leg before the repair surgery. Looking forward to biking this summer!
Also, in response to the last post, an MRI won’t necessarily show the scar tissue, or at least that is what I was told back in the “dark days” last year…
Oh, and back to the PT protocol. Never push through sharp pain. Ok to push through some pain/ discomfort, but never through sharp pain- that will start the cycle all over again!
Congratulations! Sounds like a very successful outcome. I’m sure your positive attitude has helped. Thank you for sharing.
Thanks Maura. Had a bit of a set back after my last post. Was at 135 rom and preparing for ski season 6 weeks after my right knee replacement. It was going swimmingly! Then at week seven I had a fluke accident and completely ruptured my patellar tendon, pulling it clean off the shin bone and it split up all the way across my new knee and up to the thigh. Ugh. As my right leg collapsed, I must have tried to stop the fall with my left leg and broke my left foot. Emergency surgery to repair the tendon, followed by four months in a straight cast- the idea is ( ironically) to force scar tissue formation to hold the tendon repair in place. I’m now out of the casts on both legs but my right knee is encased in a block of scar tissue- I’m now stuck at 50 degrees flexion and in a world of hurt. Total bummer. Looks like I’m in for another surgery to remove the excess scar tissue ( again!) and the entire PT protocol to keep the regrowth from re- binding. Also ended up with a stomach bleed from the meloxicam so no more anti inflammatories. You can’t make this stuff up! Trying to keep my spirits up as I prepare for pt marathon number 2! Wish me luck…
Hi Robin. I had Dr Noyes open my left knee back up and clean it out after waiting 5 years thinking that nobody could help me. It was a 2 hour drive and I used his PT team afterward. I had lost muscle from not bending the knee for so long. He only got my knee to 90 degrees. I used the Ermi at home at my own cost. Tim and Christie were wonderful to work with in PT. Unfortunately, my scar tissue slowly came back. I will just have to live with it, I guess. I had my right knee done in Sept. 2022 and it is much better than the left knee, but it isn’t great. Glad that you are doing better. Good luck!
Do you happen to know if Dr. Noyes has retired or is he still practicing?
Good morning Community-
Does anyone know if their arthrofibrosis was evidenced or visible on MRI or only visible by arthroscope? It is my understanding that it is caused by adhesions/scar tissue formation which consequently results in pain seeking and restricted movement.
I know in the past I have had adhesive capsulitis of the shoulders and had a successful capsule Tony with lysis of the lesions in one shoulder with good results. I started apt the very next morning following Shirley’s and went thee days a week with exercises to be done on my off days. I was in PT for several months with good results. Gentle ROM and not aggressive PT was key in my opinion to my success.
I am wondering if knee arthofibrosis is visible on MRI; that is can the adhesions be seen on MRI or only on arthroscope?
At this time I am rapidly losing function and range in my knee and this has resulted in knee and leg weakness etc. it’s a compounding problem. I am crutch dependent and trying to maintain what range I do have. I also believe that the fibrosis and joint inflammation was compounded by active covid infection in October 2022.
Any input re your diagnostic workup and diagnosis would be most helpful. I appreciate everyone’s input and suggestions.
Sincerely
Patricia
My Arthrofibrosis only showed when the MRI was done using contrast injection
Starting in 2011,I have had 3 complete TKR on right knee,along with 2 manipulations,and a synovial lining removed.Each TKR was done by a different surgeon.All of these surgeries were done in an attempt to relieve the pain I was having after each TKR,as the surgeons was at a loss ,as to where the pain was coming from.Leg was swollen and I gradually loss all of my ROM .Extremely diffucult to get in the car ,or go up and down stairs,much less try to walk without extreme pain.Depression left me feeling,that the quality of life I used to know is over.I just turned 70 in May of 2022.I have researched my condition for many months/years.Fortunely,I happened to find a doctor that specializes in Arthrofibrosis,otherwise to me known as scar tissue from surgeries.As a last resort,I made the consultation appointment with Dr.NOYES from Cincinnati,OH.After I discussed my history ,Dr. NOYES explained that he would remove the scar tissue,and I would be required to do all my therapy there.Fortunely I found a BEST Western 2 stoplights from the hospital and doctor office and therapy clinic. So grateful every thing I needed was within a few blocks. July 11th 2022 was surgery with large amount of scar tissue removed,12 weeks of therapy,and a referral to Dr.Fritz, to control the inflammation that causes scar tissue,that she prescribes a cocktail of anti-inflamatory drugs to keep the stiffness and swelling down,while trying to gain more ROM .It is now November and I couldn’t be more pleased to say I went from 15 degrees ROM to 80 degrees .It was worth staying in Cincinnati for 12 weeks,some people stay less,but my case was severe.I went golfing with my gradsons for the first time since 2011 .To say this has been an emotional journey is an understatement,as this has affected my wife and family as well.The therapy I received by Marie ,was superb,as well as all the support by Dr.NOYES assistant Eben who provide my wife with lots of compassion as she witnessed my progress ,that we both never thought we would see. I am now back back home in Illinois continuing my home exersizes and anti inflamatory meds.Thankful to find Dr. NOYES, Eben and therapy staff,and all of the scheduling staff that made everything so smooth .Feeling blessed after 11 years of pain and being depressed.Thank you to the NOYES KNEE INSTITUTE!!!
I too visited Cinncinati Sports Medicine following a total rupture of my quad and patellar tendon during MUA. I had a bad scope and could not bend my knee. Ultimately my knee was put back together and I travelled to Ohio for arthrofibrosis treatment. Dr Lindenfeld (Dr Noyes partner) did my surgery. I stayed at the Residence Inn for I think 5 weeks with an intense post op PT protocol. He gave me my life back. I went from 15% flexion to 85%. This was 15 years ago. I travelled from Atlanta to Ohio and at that time my insurance covered it.
I had a successful outcome with Dr Noyes. I’m having some increased pain and swelling. Dr Noyes suggested I see a rheumatologist. Unfortunately, I didn’t see Dr Fritz when I was in Cincinnati. I’m looking for information on the medication protocol she uses, so I can tell the rheumatologist in the Boston area.
Many thanks,
Me too, if anyone can chime in on that protocol.
Hello Community
My name is Patricia Zubini Weiss and I am new to the community. I am 62 years old and sustained a knee injury (fall) to my left knee 1 year ago. Initially I was diagnosed with patellar femoral syndrome and sent to PT. An initial MRI was not completed. While at PT I started experiencing more swelling and they sent me back to orthopedist. I was braced for approximately 2-3 mo and that led to knee stiffening and worsening pain. Finally they did MRI 7 mo following injury which only showed mild joint effusion and some “non specific soft tissue swelling” of medial side of my knee. They then re tried PT where I was told to push through the stiffness and pain. Knowing this made zero sense as it led to more pain and swelling, I sought a new orthopedist’s opinion who recently diagnosed me with arthrofibrosis and said “there is really no treatment”. He also indicated/recommended a knee scope to explore the knee and to clean out any adhesions. He refused to repeat MRI to determine any new injury or visible scar tissue prior to scope. He said while doing scope they would range of motion my knee forcibly to break up the adhesions. I knew that would only lead to more inflammation and scarring of the knee joint with likely a worse outcome and worsening arthofibrosis. .I have had an steroid injection without any effect. At this juncture , I am not sure what to do. I am not comfortable using this surgeons approach as he indicated it would likely wind up with more inflammation and likely new scarring. With that said, I am searching for a MD/surgeon that is experienced with this diagnosis of arthofibrosis and whom uses rheumatology to help modulate the inflammation and a controlled PT approach. And who uses a surgical (mindful non aggressive approach) to remove scar tissue with a comprehensive protocol post operatively to control inflammation. I live in the Boston area- is there anyone in the Boston area? I am also willing to travel if needed. Who has had a successful outcome and who do you recommend? Also I see some fold mentioned medications by rheumatology to help control the inflammatory process: what medications have been used? I am having trouble going up and down stairs, getting up sleeping chairs, working, and dressing. Symptoms have now also begun in my opposite knee as well and leading to a host of symptoms of blog my back hip and foot due to compensatory gait. Any help and advice would be so greatly appreciated.
Sincerely,
Patricia Zubini Weiss
Hi Patricia,
So sorry to hear that you are going through all of this. My first comment to you is a full-throated FOLLOW YOUR INSTINCTS! You are right to pause and reconsider the approach this doctor is suggesting. I have AF and have had 9 surgeries, most of them with the Steadman Clinic. Surgical interventions for AF are unlike ANY other kind of surgery and most surgeons are not trained or experienced to do it. There is a very small list of dedicated AF experts in the states. To much detail to put into this post but if you need to talk feel free to call me. I can share my thoughts on AF and why the Steadman Clinic is superior. Email me and I can share my cell if you want to ask more detailed questions.
Best,
Victor
Thank you Victor for your thoughtful response. Since I have written last I saw an orthopedist specialist in Boston who “downplayed” the arthro fibrosis. My knee is beyond stiff and beyond painful. I can certainly check out resources out of state but not certain they will be covered due to this being worker related injury.
Any info on local doctors in Boston area would be great as I am limited by workman’s compensation.
Might you have any info re rheumatology associated evaluation or protocol used to help address this condition??
Thanks so much.
Patty
Hi Patty,
Sorry for the slow reply! I thought that I would get an email from the site if you replied (I did not). I don’t know of much in your area. In the US I am aware of Noyes (Cincinnati) and Steadman (Vail, CO). I will check back here more often to see if you reply again!
Best,
-victor
Hello Community
My name is Patricia Zubini Weiss and I am new to the community. I am 62 years old and sustained a knee injury (fall) to my left knee 1 year ago. Initially I was diagnosed with patellar femoral syndrome and sent to PT. An initial MRI was not completed. While at PT I started experiencing more swelling and they sent me back to orthopedist. I was braced for approximately 2-3 mo and that led to knee stiffening and worsening pain. Finally they did MRI which only showed mild joint effusion and some “non specific soft tissue swelling” of medial side of my knee. They then re tried PT where I was told to push through the stiffness and pain. Knowing this made zero sense I sought a new orthopedist opinion who diagnosed me with arthrofibrosis and said “there is really no treatment”. He also indicated/recommended a knee scope to explore the knee and to clean out the adhesions. He refused to repeat MRI to determine any new injury or visible scar tissue. He said while doing scope they would range of motion my knee forcibly to break up the adhesions. I knew that would only lead to more inflammation and scarring of the knee joint with likely a worse outcome. At this juncture I am not sure what to do. I am not comfortable using this surgeons approach as he indicated it would likely wind up with more inflammation and scarring. With that said I am searching for a MD/surgeon that is experienced with this diagnosis of arthofibrosis and whom uses rheumatology to help modulate the inflammation. And whole used a surgical (mindful non aggressive approach) to remove scar tissue with a comprehensive protocol post operatively to control inflammation. I live in the Boston area- is there anyone in the Boston area? I am also willing to travel if needed. Who has had a successful outcome and who do you recommend? Also I see some fold mentioned medications by rheumatology to help control the inflammatory process: what medications have been used? I am having trouble going up and down stairs, getting up sleeping chairs, working, and dressing. Symptoms have now also begun in my opposite knee as well and leading to a host of symptoms of blog my back hip and foot due to compensatory gait. Any help and advice would be so greatly appreciated.
Sincerely,
Patricia Zubini Weiss
Hi Patricia,
I too live in the Boston area. I had great success with Dr Noyes and his PT protocol. I stayed in Cincinnati for 5 weeks.
The team surrounding Dr Noyes is very good, and they understand Arthofibrosis.
Maura Lundie
Hello Maura
Thanks so much for sharing your message. I am glad to hear you had some success in treating your fibrosis with Dr Noyes. It seems that his name/team has come up by many with good outcomes. I am living in MA and recently saw an Orthopedist in Boston who mentioned fibrosis but in my humble opinion seemed to “ under emphasize” it as any real contributing factor to my pain, stiffness and swelling. With that said, I am still in search of a provider who can evaluate and treat me for arthofibrosis. It seems implausible that there is no one in Boston specializing in this condition particularly given our healthcare in Boston.
If you dont mind my asking was traveling to and remaining in Cinn something that you felt was manageable? Do you recommend traveling with someone? Where did you stay while out there? How was your recovery following surgery?
I see you mentioned above you are having increased pain and swelling and are seeking treatment for rheumatology re additional treatment. I hope you found info needed as I believe in precious thread someone mentioned protocol. I also hope you were able to see rheumatologist here locally. If so did you see anyone you would recommend and did you receive additional treatment?
Thanks so much for sharing.
Patricia
Can you tell me where you stayed? Coming form Florida.
Can you also tell what the communication was like with Noyes office?
Having trouble getting through to them before initial visit.
For those looking for accommodations during treatment by Dr Noyes, we recommend the cottage in Loveland OH found on Airbnb “country place with spacious lawn …”. The 2 BR cottage is quite comfortable, the hosts are delightful, and it is less than 5 miles to Dr Noyes’ office. This cottage is convenient to everything we need (shopping, restaurants, doctors, hospital). Home away from home. Highly recommend.
Can you tell me more details where you stayed? Coming form Florida.
Can’t find on Airbnb?
I had knee replacement surgery in 2017. I seems my knee is getting stiffer, has more swelling and pain as time passes. I have tried nerve burn in the knee and that helped a little. I am live in Southwest Missouri and I am looking to have anthrofibrosis surgery, When looking at the different posts on this website it appears that Dr. Noyles, Dr. Amendola (Duke University) and the Steadman Group (Vail Colorado) are the best alternatives for anthrofibrosis surgery. Which doctors would you recommend for the best results? At the Steadman Group which doctor would you recommend. Thank you very much for your help.
Greg Edwards
I had lysis at Stedman and it was good for a few months until the PT messed it up
Hi, I went with Dr Noyes and had a terrific outcome. 15 months later and I’m at 120/125 ( before the scar removal surgery I was stuck at 85) with rarely any pain (and only during an intense work- out). In addition to the surgeon, consider renting the ERMI Flexinator. It kept the returning scar tissue ( it is inevitable that it will grow back to some extent) stretched and pliable. I think it was a key to my successful outcome- I used it religiously. Also make sure your PT is familiar with arthrofibrosis- if the pt is too aggressive you will stimulate scar tissue regrowth so you need to go light and frequent as opposed to pushing it too hard. Im about to get my other knee done in November with David Mayman. Not taking any chances this time around:). Will keep you guys posted!
Thank you for sharing your experience. I wish you well in your recovery.
In re to equipment you mention: do you know where did you rent this equipment from? I agree you’re right re PT: if too aggressive too can cause I inflammation and scarring. This is what happened to me.
I see you mentioned that your surgery in Nov will be by Dr Mayman. Where is he located please? At Hospital for Special Surgery in NY? If you don’t mind sharing your experience re your second surgery I’d greatly appreciate it. I hope you’re doing well.
Finally as sort of your protocol in recovery did you see rheumatology and were any special medications prescribed for you to assist your recovery?
Thanks so much.
Patricia
Hi,yes Dr Mayman is at HSS in NYC. I’m at week 5 post TKR and it is going great. ( although I’m following the PT protocol from Dr Noyes- haha). You can rent the Flexinator from ERMI with a prescription from your PT. Insurance doesn’t often cover, though. If you can’t get it or don’t want to pay for it you can get a similar result through the traditional chair exercise with modifications- slightly trickier but it works. Harder to track your progress though. What I love about the Flexinator is that it has a tracker on the device so you can see how you are progressing rather than waiting to get measured at your PT visit. Anything to motivate!
Oh on medications I did Kineret injections into the kneecap as well as steroids by mouth for several months ( after a period of healing). The Kineret is unproven and not covered by insurance but I was willing to throw everything I could at it. This time around, so far I haven’t needed either ( I’m at week 5). Just Meloxicam, Tylenol, pain meds and ice.
I had arthrofibrosis, had 3 surgeries to treat and after a year and a half of PT, a CPM machine for 21 days, and the grace of God I got to 135. It was so sever orthopedic said I wasn’t going to make it past 90 degrees, and was amazed at how much scar tissue was built up again on the third surgery. He said it was like a big blooming flower! After this I never recovered the same, have osgoood-schlatter disease, witch caused a bone growth at the bottom of my knee cap. I guess I had it all along, and it was never treated. Also have patella tracking disorder where it is partially popping out of place and back in. After 2 years the arthritis is severe behind the knee cap. I am on crutches awaiting a wheelchair at 29! I need another surgery, but they can’t do it because the arthrofibrosis would come back!
Is it true unresolved is good-schlatter disease untreated causes runners knee? Is it possible I had a messed up knee all along? My mom took my to doctors around puberty because my knees and ankles giving out. They took me to a specialist but they said it was growing pains. A school nurse was the first to tell me I may have is good-schlatter confirmed later by an orthopedic. How can I keep this arthrofibrosis from coming back? As severe as it was is it possible to be genetically disposed to get arthrofibrosis? I have PTSD and Depression, and Anxiety from a stressful childhood. Have they found a way to calm this ‘stressor gene’ down? Any info is helpful as I just see arthrofibrosis and arthritis, but not how to treat arthritis when possibilities of arthrofibrosis coming back? Just therapeutic outlooks, but no resent updated about that as well. I recently have turned to cannabis as a treatment option since conventional options don’t work for me, as I had my gallbladder removed when I was 18, and I developed IbS soon after, because I was stubborn and eating the same junk food, I cannot take ibuprofen or pain medication at all! If I do it tares me up, doesn’t help I have had a bad knee all my life so I have taken a lot of these medications for too long. Probably the whole reason I have stomach issues.
I broke my ankle, I had surgery 13 days later, 9 screws and 1 plate. My ankle was stuck when the cast came off. I started pt in January 22. I was -30 degrees, after a pt change, I am now at +12 degrees.
I have a very painful stumpy walk. My surgeon said he has only seen a few in his career like mine, yet no explanation. I have had 2 other opinions, no real outcome. I definitely feel like my ankle is a “hot potato” no one wants it.
I have been using a dynamic/Jas splint 3x a day, it helps a bit with walking. I am at a loss as what to do. It always seems to revert back.
I truly believe I have this AF, but who/how can it be diagnosed? My X-rays look good from surgery, but ankle joint is so stuck!!
I live in Bostons north shore.
I
I don’t know if you should be walking to much if you don’t have a full range of motion. My doctor and physical therapist said it was important to get the ROM before the strength. Also they didn’t explain this but learned later, it’s ‘stretch through’ scar tissue NOT ‘break through’. So swinging your joint back and forth won’t help, slowly get a deep stretch either direction. Started noticing results after realizing this! Hope this helps.
Are there any surgeons that specialize in arthrofibrosis in NY that anyone has used?
I don’t live in NY, but I have heard good things about Dr. David Mayman at the Hospital for Special Surgery in NYC. HSS in general seems to have a very good reputation.
I shattered my patella in May – slipping on a wet floor. I had 15 pins and a titanium plate inserted during my first surgery and was locked straight for 6 weeks – 4 weeks in a cast and 2 weeks in a brace. No movement at all was allowed. Once I was allowed to bend the knee, I could not get past 30 degrees ROM. I had full extension due to how they set the cast. I had arthroscopic surgery for LOA and MUA in mid August. I now have 115 degrees ROM if they push really hard on the leg. Everything seems to make the knee swell so I have not been able to do anything yet but stationary bicycling with no resistance and PT exercises for ROM such as heel slides on the wall, flexionator, etc. Trying any quad exercises sets me back by causing swelling and I lose ROM. I am concerned that 118 may be as far as I can get as I am a little stuck there – but we keep trying. I need to determine net steps and if drugs may help.
I highly recommend Dr Noyes in Cincinnati. He is a pioneer in Arthrofibrosis treatment and currently uses a three pronged approach … surgery, therapy, and pharmaceuticals. Unlike most surgeons whose care stops at the operating room door, Dr Noyes monitors every step of his treatment program. Very comprehensive approach.
Darlene,
I’m wondering if you can tell me about your experience with Dr Noyes. Length of time spent in treatment and any follow up. Did you maintain most of what you achieved through treatment. I’m desperate and trying to avoid a wheelchair with severe arthrofibrosis in my right knee.
Lynne, My beau, Jeff, is currently a patient of Dr Noyes. Jeff is 3 weeks post op from Arthrofibrosis surgery. Jeff had TKA in March 2022 and developed a large amount of extremely painful and debilitating adhesions. His orthopedic surgeon in FL did not know how to treat this condition. After internet research, we traveled to Cincinnati for a consult with Dr Noyes and he knew immediately what needed to be done. Although only 3 weeks post op, Jeff now has decreased pain and swelling. His range of motion and stability have also improved. Dr Noyes is actively involved in every step of Jeff’s treatment.
We expect to stay in Cincinnati for a total of 6 weeks. This is recommended as it allows time for recovery from surgery, specialized physical therapy, and pharmaceutical treatment. Do not hesitate to make an appointment with Dr Noyes. He will explain things thoroughly and let you know if he thinks he can help.
This has been a long, tough road for Jeff, but, at last, he is headed in the right direction. Noyes knows knees. Make that consult appointment as soon as you can.
I have had 6 procedures and TKR but. Every time after a few weeks scar tissue sets in and am just so discouraged it’s been 3 years of hell
Michael,
Upon reading a comment on this platform about successful treatment/outcome from Dr.Noyes and his amazing team, I made an immediate appointment! I could not believe is office was in my hometown of Cincinnati, Ohio. I had 3 other second opinions and all the treatments were different. My Initial TKR was in 12/20. The scar tissue built up VERY fast even through 51 Therapy appointments and exercising at home. I am SO incredibly grateful to the post from a woman from Boston who’s experience with Arthrofibrosis sounded just like mine. I had surgery 4/22 and I am doing excellent. The physical therapy by Christie and Tim was absolutely amazing and catered specifically to my condition. I also see Dr. Fritz (in coordination with Dr.Noyes who still has me on a “cocktail” of drugs to prevent the swelling in my knee. I got my life back and am starting a new job soon! Based on my successful results, I would HIGHLY encourage you make an appointment and go to Cincinnati!
What is the drug cocktail? Did you have to travel far to the surgeon??
Thanks for sharing your story. What medication cocktail was used for you to help control swelling? Did you start that before surgery or after surgery?
Thanks much.
Patricia
Hi Kimberly,
I had Arthofibrosis surgery in April with Dr Noyes. I have some inflammation, and Dr Noyes has recommended that I see a rheumatologist. I live in the Boston area, and Drs up here don’t understand Arthofibrosis. I’m wondering what medications you are taking? Have you seen Dr Fritz?
Many thanks,
Maura Lundie
Hi, I have knee arthrofibrosis and am wondering if anyone on this forum has seen Dr. Amendola at Duke University Hospital for treatment of arthrofibrosis after TKR. If so, what was your experience like and would you recommend him? Thanks, I look forward to hearing from you!!
Hi, I went down and spoke with him. He seemed great. And the pt is totally integrated. My only concern is he himself doesn’t do knee replacements- probably doesn’t matter but n the end we chose doctor Noyes. But he did seem great and was highly recommended by other surgeons when we asked them who they would put on the “ short list”. Duke is the epicenter for some of the newer arthrofibrosis treatments- I’m pretty sure they were the first to use Kineret injections as a supplement to the scar removal surgery ( perhaps in the context of frozen shoulder, not that it really matters. )
Hello! I am a 69 year old male that had left TKR in 2008. Manipulation done post TKR due to active flexion less than 90 degrees. PT post manipulation then arthroscopy to attempt scar tissue removal were both unsuccessful and knee stuck at active flexion of approximately 85 degrees. Orthopedic Surgeon said scar tissue so dense that almost unable to insert cannula when arthroscopy done to attempt scar tissue removal. Approximately 8 years post TKR after multiple falls, 2 of which resulted in rotator cuff tears necessitating surgical repair, went to different Orthopedic Surgeon for help. We decided on open synovectomy to remove scar tissue. Was told 40% chance of improvement but was willing to try due to falls. Despite a cereal bowl full of scar tissue removed and PT was back to original condition after 6 months. While no increase in active flexion no falls since open synovectomy so certainly some success. Believe improvement combination of surgery and increased vigilance against falls. Am healthy and able to walk on treadmill and lift light weights so lifestyle restricted but am able to stay fairly active and somewhat fit. Falls are and will continue to be a concern. Since original TKR am almost ready for revision and other knee needs to be replaced. Will same thing happen with other knee? Regardless of whether or not I do other knee would love to do more with wife, kids, and grandchildren including biking and hiking. Also would love to be able to get up and down from seated position without contorting body and risking a fall or relying on supports to get up and down. Navigating stairs is also a big concern and would love to make that less risky. This leads me to the real issue. Who is the best at fixing this problem? That will probably generate some debate so would love 3 names and contact info if available. Would want these Doctors/PT’s to have fairly extensive experience and a good success record. Any info will be greatly appreciated and thanks in advance!
Every so often I come onto this site, hoping for a miraculous cure for Arthrofibrosis.
I had surgery with Dr. Finn several years ago! I thought that he was the GURU of Arthrofibrosis, my answer to relieve the horrible pain, a cure-all. I spent a month in Chicago. My Arthrofibrosis still
Now my other knee has 2 tears on the meniscus, bone – on – bone and Arthritis. The pain is horrible. I’ve had injections, meloxicam (anti-inflammatory), PT, etc. I am 100% reluctant to have a knee replacement on this knee. It’s depressing and EXTREMLYPAINFUL to walk, sleep, exist etc.
Three days ago I started CBD/CBG oil and using arthritis ointment. No help yet, hoping it will help within time. Otherwise, ANY Ideas/suggestions are welcome. I did contact Dr. Noyes office previously, however in discussion with his office staff, re: having 3 knee replacements on my right knee, they told me that there probably wasn’t much chance of success. They offered me an appointment, but I ????? Any helpful suggestions PLEASE respond.
Hi LAL
I saw one of Dr. Noyes’ associates in California for the implant Dr. Finn put in.
He wouldn’t help me. I want to find someone to remove it and reconstruct my knee joint, but no luck so far.
I don’t know why they won’t treat your other leg.
I hope you are doing better.
The Finn implant can only flex to 120 and nobody is willing to replace it. I hope nobody else is going to him.
My PPO insurance refused to pay for a year, but I finally got it covered.
I’m considering going to Switzerland for Euthanasia because my quality of life is so poor.
But I’m still hoping for someone to help me.
I wish you well.
Hang in there Jennifer!!!!!! There’s got to be something that will help, maybe an outside the box option. Even if it’s amputation and a good prosthetic, you could still get around, swim, etc. I live with a lot of pain and sadness because of arthrofibrosis after TKR too. Don’t give up!!!
Hi all, just an update. I too developed debilitating arthrofibrosis following a rather routine knee replacement. I remember coming back from a spectacularly unsuccessful MUA last spring and was demoralized to discover I couldn’t get my leg around the petal of my new bike, which had arrived that morning. I was devastated.
After a ton of research, my husband and I decided to work with Dr Noyes and team. He did the surgical repair in July and then I worked super hard at the pt for six months or so ( and still use the Flexinator for maintenance). Fast forward and I am pleased to report that I just returned from a three week bike trip in the Italian alps, about a year after the repair surgery! So when a non- specialized surgeon provides a demoralizing prognosis ( I was originally told I was unlikely to bike again!), just know that with specialized surgical and Pt support and hard work, it is indeed possible to recover an active lifestyle following even a severe arthrofibrosis diagnosis.
But my strong advice is to find a specialist in arthrofibrosis ( both the surgeon and the physical therapist), and travel if at all possible to work with the right people. I spent the summer in Cincinnati last year ( I’m from Boston) to work with Noyes and his therapy team; no question in my mind it was worth it. I am pretty confident I would not be doing as well if I hadn’t- the arthrofibrosis PT protocol, for example, is exactly opposite of what a typical physical therapist would recommend ( this is the most dramatic example, but suffice it to say that even your well regarded TKR practice knows less about arthrofibrosis than you will after a few months of research!).
The Noyes practice is particularly impressive because of the complete integration and coordination between the surgical and PT teams. We found other arthrofibrosis specialists with this model ( Duke comes to mind), but it is not as dominant of a model as I had assumed.
Good luck!
Wow, Robin, that’s an inspiring and wonderful update. Thanks for sharing! How old is Dr. Noyes – I’d like to hold out a few more years before getting another replacement and I’m hoping he won’t be retiring soon! And please tell more about Duke – what you found similar to Noyes and different.
Hi Caroline. Dr Noyes is probably 80 by now; not sure how long he will be practicing. Total bummer. The other docs on my short list were Amendola ( Duke) and Mayman ( HSS). I need to get my right knee fixed so I have an appointment at HSS early September. Happy to share my thoughts after that visit!
I had bilateral tka.now I have arthrofibrosis.Need all the info I can get.Thank you
Hi Jerri,
I had Arthofibrosis after my TKA. I had surgery in April 2022 to have the scar tissue removed.
I went to Cincinnati to have Dr Noyes do the surgery. I spent 5 weeks in Cincinnati following Dr Noyes PT protocol. What a difference!
Good luck!
Hi Maura,
I believe that I met you at PT after your surgery with Dr Noyes. I was a patient in PT at the time (still am). I’m delighted to hear that you’re doing so well. My TKR was in January and I’m still in PT two times per week. I had a MUA in March and got my ROM. But the AF is impeding my progress. I’ve been doing BFR which has definitely helped with strengthening while not inflaming the joint. This week I saw Dr Noyes’ preferred Rheumatologist and started a medication cocktail to bring down inflammation. I’m hoping it works. What a journey it’s been! I’m hopeful for progress.
Hi Becky,
I’m glad that you have made progress. Here’s hoping that the new medications will calm down your joint! I’m still going to PT in Waltham,MA. The PT follows the same protocol as Dr Noyes’ PT practice. BFR definitely helps build up muscle strength.
I’m flying back to Cincinnati for my 3-4 month follow up with Dr Noyes and his team. So glad I found this site!
What is BFR?
Jerri,
I am a patient of Dr Frank Noyes in Cincinnati. I had my TKR in January and have really struggled. I had a MUA in early March and am still doing PT twice weekly. Like all of you, I had no idea about AF or that I might develop it. Fortunately Dr. Noyes has been closely monitoring me and working with my PT. He and his PA do rounds in the Physical Therapy area which is super helpful. I’ve been doing BFR therapy which has been helping with strengthening and muscle activation without inflaming the joint further. This week I went to see the Rheumatologist that Dr. Noyes works with , Dr Deborah Fritz. She drained fluid from my knee and gave me a steroid injection. She also put me on 5 prescriptions (a bit overwhelming) with the idea of calming down the inflammation. She explained that a lot of research on AF is coming out of Duke University and this drug protocol is one they’ve used with many other patients.
I had no idea when I chose Dr Noyes as my surgeon that he was one of the leading experts in the AF field. I am extremely grateful to be under his care. He does Virtual visits if you choose to consult with him. Perhaps he would be able to help you. Many people fly here to work with him and he is recommended over and over on this site.
I hope you get some relief soon.
Dr. Frank Noyes
4700 E Galbraith Road Suite 300
Cincinnati, OH 45236
513-347-9999
The Noyes Knee Institute
Mercy Health-Cincinnati Sports Medicine
The bottom line is Dr. Finn passes off his surgery he does- removing a total knee replacement (TKR) and replacing it with his “Finn Hinged Knee,” as “outpatient surgery.” This is way more than 24 hours in a hospital.
This is a major operation, but it makes him exempt from insurance pre authorization. So if it is not covered, you will be responsible for the insanely expensive Hospital bills, and radiation bills.
Conveniently- all of Dr. Finn’s bills are covered.
This “Finn Implant” is almost the full length of the leg.
If it’s worked for you, great! But just know, if it doesn’t, your further options are over.
When you visit Weiss Hospital, you might realize that this place is so ghetto.
If Dr. Weiss was so great as he claims to be, his office is pretty much what you see in a low-income clinic.
All I ask them for is data, published articles, personal anecdotal statistics- to prove this was valid to my insurance.
However I have been treated like a paranoid, crazy, person.
My goal is not to hurt Dr. Finn- but so that more people aren’t hurt.
Hahaha- I am kicked off the Facebook site for the 3rd time for asking for facts. God forbid.
Is this freedom of speech? Or is it censorship? I asked questions and was silenced by the “facilitator.”
There are very few “members” on this site, (less than 100), and I question if any of them are legitimate.
Or if the platform was a creation of Dr. Finn’s.
He certainly has enough young interns following him around like little fanboys. And I’m sure most of them know how to navigate the internet much better than those of us who were educated during the typewriter era.
There is something very cultish and creepy about them (personal & subjective observation.)
Thank you for your honesty Jennifer. I have wondered similar things about the FB site.
Hi Jennifer
Your post about the hinge is interesting. I’ve had arthrofibrosis since my first knee replacement in 2016. I had a revision in 2017 but the arthrofibrosis returned. I now have an extremely limited rom and have to use crutches all the time. All my other joints are affected because of my poor gait and I’ve already had one hip replaced. My other knee is in a woeful condition but I can’t even consider getting it replaced. I live in Ireland and have seen many consultants here none of whom would put a hinge in my leg as they say the lifespan of hinges is only about 7 years and the only alternative after that is either complete fusion or amputation. I’m 58 and considered way to young for a hinge. I’m very surprised that this is seen as a treatment for arthrofibrosis.
Hi-
Does anyone know someone who had surgery with Dr. Finn?
I have to justify to my insurance the surgery was not experimental.
jenbowhay@gmail.com
I had surgery with Dr. Finn several years ago! I thought that he was the GURU of Arthrofibrosis, my answer to relieve the horrible pain, a cure-all. I spent a month in Chicago. My Arthrofibrosis still exists. I’ve had to adapt to the scar tissue, limited r.o.m, pain, etc.
I highly let recommend: Dr.David Mayman @ Hosp. for knee Surgery! (Unfortunately, he no longer takes Medicare.)
Hello, did you have him for artho fibrosis or knee replacement? What did you like about him and the care you received?
Thanks very much.
Patricia
Hi, just a quick update for those following my journey. It will be a year from my open knee scar removal surgery this July. Using the Flexinator, I got to 120 consistently and no pain. Recently I have encountered some stiffness and pain again so I’m back on the Flexinator. I can still bike and hike but not quite as well as at my peak. I think I have caught it early enough so I am hopeful to get back to 120 soon. But I guess the message is, this is a bit of a journey that you need to keep up with :). Will keep you posted!
Robin, Hoping the flexonator works for you! I am 5 weeks post op from my scar removal surgery. Dr Noyes and his team are amazing! Hoping some of his fellows will come to Massachusetts!
Stretching is key, and taking everything slowly seems to be working.
Hey everyone like yourself I am 90% certain I have arthrofibrosis in my left shoulder. I had latarjet surgery with dr. romeo in chicago 2020. After 3 months I fell off a hammock onto that same shoulder and fractured it (released blood all around the capsule) He didn’t answer my calls for two weeks so I made the decision myself to put it into a sling. Fast forward a full year of me trying to get ROM back by meticulously do PT. January of this year 2022 I got debreivement surgery. Now 4 months later and I still stuck externally to the point I dont have use of my left arm. It is extremely debilitating to live with as most of you know. The approach my physical therapist are making seems to be making it worse (aggressive stretching) I am about to order a dynasplint, if anyone knows any surgeons or any physical therapist in New York area or ANY recommendations please let me know!
1981 – skiing accident/ right knee – Torn Meniscus – Dr. DID NOT perform Arthroscopic surgery, AND the scar he created was about 8 inches long! ”83,’85,’87 – Scar tissue removal surgeries…helped a bit each time but scar tissue grew back. This curtailed participation in sports/activities, and caused pain.June 2011 Total Knee Replacement. I had several recommendations for surgeons. I CHOICE THE WRONG ONE! HORRIFIC post op – severe pain, black & blue from waist to ankle. Staple removal was excruciating! Doctor and staff told me I was being a bit dramatic. December 2011 – revision.- not successful February 2012 MUA – dr.was unable to t budge my knee far enough. 6/13 scar tissue removal, – Adhesion Lysis (scar tissue removal again 7/13 -. Aspiration HSS/ NYC , 12/15 revision again – went to Dr. Finn. (Chicago) -“known to be” a specialist with Arthrofibrosis. I told. doctor that severe scar tissue shows up within 2weeks -when I made surgical appt. I WAS NOT TOLD THAT HE WAS TAKING VACATION…SEVERE scar tissue occurred! MORE aggressive PT was prescribed. Begged doctor to have a MUA – waited awhile then, such severe force was used that I had a tear/wound/? that kept bleeding during/after PT….was in & out of Weiss hospital 3 (or 4 ? ) more times to stop the bleeding! I was in Chicago 1 month+….with no improvement. 6/16 – tried trial study@ HSS…no success. (While at PT had severe bleeding in surgical area – 2 ER visits. NOW- 2022 horrific pain in my other (left knee) – diagnosis – 2 tears in Meniscus. – had cortisone shot – no relief; 3 rounds of OrthoVisc injections – so far, no improvement, however dr. said might take 4- 6 weeks post 3rd injection.I AM STILL HOPING FOR A MIRACLE….in the next 4- 6 weeks. THIS IS MY QUESTION TO ANYONE….I’m still in constant pain, especially difficult to sleep. difficulty walking. IF the OrthoVisc
did not help, my options are: Meniscus Root Surgery or regular Arthroscopic surgery to remove scar tissue, OR A KNEE REPLACEMENT !!!!!! Do I dare try a knee replacement on this knee, possibly causing Arthrofibrosis now in my left knee, or do nothing, and be in pain for the remainder of my life? ANY/ALL comments/suggestions? PLEASE let me know. (I’ve already been in contact with Dr. Mayman @HSS – GREAT DOCTOR!!!, but due to the history of my knee, obviously no guarantees given by any the doctors I.’ve been to in severe pain for the past several months.What should/could I do NOW??? (If there were guarantees, I would surely go anywhere for any procedure.) THANK YOU FOR ANY INPUT!
Hey I am currently dealing with basically the same thing you are with my shoulder 🙁 it is extremely debilitating and limits life. I am about to try something called a dynasplint.. Have you heard of it? Maybe we can connect on facebook and help each other out! My name on facebook is johnny oliva
Johnny Oliva – I’m not sure if your reply was for me, Laurie. If you wanted to communicate with me, just let me know via replying on this site. However I don’t want to communicate on Facebook. We could communicate via email, fax, or phone.
I just want to make sure that I am the person who you wanted to communicate with…, I am Laurie. If you did want to communicate with me, I’d rather not be through Facebook. I would rather communicate via email, text, or phone. Thanks
Any doctors in Florid who perform orthoscopic lysis or orthofibrosis surgery.
Sixteen months ago I had a knee replacement done by a doctor in NC. He promised that I’d be recovered enough in 4-6 weeks to return to work. After surgery he sent me home to rest for two weeks. By the time I started PT my knee was already swollen and stiff. I followed my PT’s instructions completely, but by week 4 there was little improvement and the swelling was increasing. My doctor was not available to talk to me, when i finally got an appointment, he agreed to do a MUA. Which helped for only a few days.
I was frustrated by the lack of healing and improvement – and with no better advice from the doctor and PTs than pushing my bend harder to tear up the scar tissue, I began doing my own research.
I found a great TKR support group on Facebook, and then a subgroup of folks suffering from arthrofibrisis. I had never heard of this condition. And my doctor never brought it up when going over other possible risks from TKR.
I learned that it is a genetic condition found in about 5% of the population. While there is currently no genetic screening available, I did have multiple antedotal conditions that should have alerted any knee specialist. These included being a woman, being over 65, being postmenopausal, having smoked, and having a medical history of adhesions and scar tissue.
When I finally learned all this I was amazed the doctor didn’t warn me. And when I asked him why, he said that week it just happens sometimes and I should be glad I didn’t die on the operating table.
I continued my PT for six months doing 4-6 hours of workouts each day and taking Norco for the extreme pain. Nothing got better.
I continued to look for answers. Afterall I only had the surgery to get the “twenty years younger” knees the doctor promised so I could better enjoy outdoor activities. But I was left a cripple who couldn’t hike, bike or kayak.
Eventually I focused on the doctors recommended in the Facebook support group. I saved for about 8 months so I could afford the time off work.
Last October I had a consultation with Dr. Frank Noyes in Cincinnati Ohio who was one of just a handful of doctors across the country specializing in arthrofibrosis in the knee. He was very realistic about my situation telling me that every human body is unique, and a lot would depend on my work ethic.
I had the procedure to remove scar tissue laproscopically on Dec 20, 2021 (14 months aftermy original TKR). He started me on PT the next day with his great team of therapists. The idea was to work slowly and gently. Keep the knee flexing without triggering the scarring. Slowly work through the healing and then rebuilding the muscles, tendons, and ligaments in my leg that had weakened over the past year.
I’ve been working my PT religiously since surgery (3.5 months now) and my ROM is consistently in the 120s. I hope I’ll be able to make more progress as I also increase my agility with stronger and more coordinated muscles.
I strongly recommend Dr. Frank Noyes and the fabulous team he has built at Cincinnati Mercy Jewish Hospital.
Hi Lynn, totally agree. I’m from Boston and ended up with severe arthrofibrosis following a knee replacement. Couldn’t walk without a cane. It was devastating. Had my revision surgery with Frank Noyes in Cincinnati after an extensive national search. We interviewed a dozen doctors throughout the country. I now have full use of my knee. I am hiking, biking, etc with no issues or pain. In fact I’m doing a ten day bike trip in the Italian alps in July, exactly one year after my revision surgery! One thing to note, though. The pt post op is equally, if not more, important than the revision surgery itself. You need to be prepared for four to six months of extensive pt guided by a pt who has expertise with arthrofibrosis . I actually moved to Cincinnati for four weeks to get the surgery with Noyes, but also to work with/ get trained by his PT team. I continued the pt protocol ( including renting the ERMI Flexinator) at home for many months. The first few months it is a full time job- you are pretty much doing the stretching exercises for 6-8 hours per day at the beginning. If you don’t commit to the pt religiously, you won’t get the result you want because the scar tissue WILL grow back, to some degree, regardless of who performs the revision surgery. The key is to GENTLY AND PERSISTENTLY stretch it continuously during the regrowth period to keep it stretched and pliable so that it doesn’t inhibit function. At the same time, you can’t do any weight bearing, strengthening or aggressive stretching pt ( which your typical therapist will want to do in the ordinary course), because that will irritate the tissue and cause more scar tissue formation. I feel very lucky to have found the Noyes team when I did, and to have the time to devote to the recovery. You absolutely need to do both, but if you do, this condition is not as devastating as it first appears, at least in my experience. Dr Noyes has an excellent book on arthrofibrosis which you can access on the knee guru website ( and maybe Amazon), which I strongly encourage anyone who is dealing with this condition to read. Good luck!
Robin,
What an encouraging post! I’m so grateful you’re doing so well.
I had the great fortune to have my TKR with Dr. Noyes. Who knew that I’d develop this scar tissue? But as you explained so well, the key is persistent stretching and strengthening without putting lots of added pressure and torque on the knee joint itself. BFR (Blood Flow Restriction Therapy) seems to be helping me a lot as it’s strengthening the muscles and helping me with muscle activation without hurting my knee. It’s hard work, but I’m really seeing the benefit. Dr. Noyes specifically directed my PT to use it on me. The Noyes team along with their PTs are amazing!
I am now seeing his recommended Rheumatologist for a prescription cocktail. She also drained fluid from my knee and injected steroid. The jury is still out on how this works since I just saw her last Friday. I’m willing to see if this helps. She said Duke University is doing a lot of research on this currently and that’s where they’re getting a lot of their information currently.
In answer to several folk’s questions about, “ Shouldn’t my Surgeon/PT have recognized this problem ( meaning Arthrofibrosis)?” My PT said that in a typical PT setting that they might see a patient with this once every two years. As a result they don’t have the skills or experience to deal with it. When you’re with a Surgical/PT group like Dr. Noyes’ they treat it often and have developed protocols for those patients.
Best of luck out there to those of you in this battle.
Becky
Hello Becky
What medication treatment protocol was used for your knee??
Thanks so much for sharing.
Patricia
Is there a specialist in south west fl.?
Do you know of any specialists in Australia who have had success with Arthrofibrosis of the knee after TKR?
Hi Robin-
I met with Dr Noyes and his team,yesterday. They are wonderful. Did you have follow up PT in the Boston area? Did you find a rental near his office?
Thank you!
We rented an Airbnb.I can find it, I imagine. Just give me a ring 617 548 3487.. it was a really cute house and they let us bring our cat! Glad you liked the team. The head PT , Tim, is key to a good recovery. Just do what he tells you, and you will be happy!
I didn’t find a pt that I loved in Boston. They all wanted to go to strength training too quickly, which is contrary to the protocol that the Noyes team recommends. I ended up just following Tim’s protocol at home with rented equipment ( which they arranged). And then I did virtual consults with the PT team back in Cincinnati. It worked very well.
I am 74 and was born in 1948. I suffered a devastating sports injury to my right knee in 1963. At the time, my doctor could not do much since there was no technology available. I have had more than 20 surgeries in my knee. My knee developed severe pain and stiffness and over the next 30 years, osteoarthritis. I had my first total knee replacement in the 1990s followed by 5 revisions, physical therapy, and several manipulations but the stiffness and severe pain did not improve. My knee would neither fully straighten nor fully bend. The range of motion was 30 to 70 degrees. No physician believed the severity of my pain. I walked with a crooked leg and it affected my lower back and the opposite knee. I consulted many orthopedic surgeons, but everyone told that my knee could not be fixed. At least 5 surgeons recommended amputation. Finally, I found a surgeon locally through this website. He diagnosed it as arthrofibrosis with heterotrophic ossification. He performed revision surgery in Nov 2021. After that, the pain improved and I am able to fully straighten my knee and bend it to 90 degrees. The pain in my back and opposite knee also improved. For the first time after 20 years, I am walking straight! I could save my leg and start a new life. Thanks to this website and God bless its creator. Valente Carrillo.
Hi Valente! Thank you for your post. I’m super happy for. What a blessing! Can you provide the doctor’s full name and location? Also, a little bit about the surgery and physical therapy. Thank you in advance for your time.
Hi Terry, I am just back home after a 700 miles round trip. My story is very long and it is easier to discuss over phone. Feel free to contact me at 432 934 6424 or Val.r.carrillo@gmail.com.
I would love to know who helped you because that sounds just like my story! Thank you for sharing your story for others and to know there is someone out there willing to help. After being told it’s as good as it’s gonna get has been devastating.
Hi Justice, My story is very long to discuss here. Feel free to contact me at 432 934 6424 or Val.r.carrillo@gmail.com.
I had BTKR back in August 2018. Slight hiccup at the start of rehab caused by a lack of good pain management medication – once sorted, got right into it. Managed to get to 90/100 degrees at most, never any further – felt like there was a tight band there stopping me (if I pushed further, it hurt like hell).
Had an MUA in October – surgeon said that he got me to 125 but no matter what I did in the days, weeks, months after, even with very regular physio and the use of a CPM machine, I never got close.
Late last year I had pie crusting surgery (AKA quad tendon release). Surgeon said he got the bends up to 115 but again, no matter the effort, I haven’t come close.
We are now looking into whether the block is from arthrofibrosis as everything is pointing towards that.
So, does anyone know of any specialists in this field that are located in Australia, even better if they were in Canberra?
I had a total knee replacement (TKR) over two years ago. I have a good range of motion. However walking is difficult since I feel a spastic like tightness that resists joint motion. At times I also have pain at the edge of the knee cap. My surgeon believes my difficulty is due to scar to scar tissue and that nothing can be done about it I am wondering if anyone can suggest a course of action that would be available in the San Francisco Bay area.
Are there any AF specialists in the Boston,MA area that work with patients that have had a TKR and MUA? I’m almost one year from my TKR, and continue to be sidelined by my arthrofibrosis. I’m 58, and can no longer participate in the activities that I used to.
Many thanks,
Maura
Hi Maura. I’m from Boston and we interviewed several local surgeons trying to find someone with arthrofibrosis experience for my revision surgery. You would expect that Boston would have someone but unfortunately not. We had no luck whatsoever- we knew more about the options from our research than the surgeons we interviewed!. We then started a national search. The closest surgeon we found with relevant expertise was David Mayman at HSS in NYC, who has an excellent reputation and has run several trials on reducing regrowth after revision surgery. I ultimately chose to go to Cincinnati to Frank Noyes where I had an excellent result. He is the leading guy nationally in the arthrofibrosis world ( the other group is in Colorado but unfortunately they won’t work on you unless they did the initial joint replacement). I had a very severe case- was disabled and couldn’t walk without a cane. I am now hiking, biking, etc. I had minimal regrowth fortunately. So I’m glad I looked around. I hope that is helpful!
Robin,
Thank you. How long did you stay in Cincinnati? What was your follow up like?
I’ll look him up.
Maura
Hi Maura. The key to a successful outcome is the post surgery PT protocol. You need to do precisely what they tell you, no more and no less. No weight bearing exercises are permitted. Dr Noyes has an in- house PT team that starts you on the protocol within days of the surgery, with a pain block if necessary. This is key because there will be some regrowth, so you need to keep it stretched out and pliable before it hardens again. I rented a house in the area and did the pt with his in -house team for 3-4 weeks afterwards. Then I rented the equipment and did the remainder of my PT in Boston, with phone consults with the Noyes PT team in Cincinnati. I tried a few PT places in Boston, including Spalding rehab, but I found they weren’t much help, so I just did it in my home gym with a rented Flexinator and Extensionator- you can rent both of these with a prescription, which Dr Noyes and his team provided. He also has you doing hanging weights to work on extension. I need to warn you- this is a HUGE commitment; I did 2 -3 hours of PT per day for the first three months or so, and then started trailing off. I stopped using the prescribed PT equipment altogether around month 6 ( but I still do the hanging weights for maintenance). In addition to the PT, he supplements your post- surgical protocol with oral steroids and weekly injections of Kineret, which is a rheumatoid arthritis drug designed to prevent scar tissue from forming. I continued the Kineret injections at home at Beth Israel in newton on route nine ( Dr Ramappa supervised; he repaired my broken collarbone and subsequent frozen shoulder ( surprise, surprise- this is also a form of arthrofibrosis!) a few years back so he was willing to continue with the injections even though this isn’t something considered standard of care in the Boston medical community. I am now eight months out. My extension is perfect and my flexion is at 125-130 (I was completely frozen at 80 before that; I couldn’t even get my leg around a bike pedal motion or even tie my shoes!). I’m now easily doing pretty intense bike rides ( I’m training for a 7 day bike trip in the Italian alps scheduled for next summer), and doing pretty challenging mountain hikes several times a week. The Boston doctors we interviewed said there was nothing to be done- they could remove the scar tissue but, considering how aggressive it was, it would just grow back. I am a pretty active person so that was just not acceptable; so I was willing to do ANYTHING to get back on my bike; even moving to Cincinnati in the heat of the summer! Needless to say, I really feel like I dodged a bullet. One thing to note, the sooner you repair this, the better. My scar tissue was very aggressive and I was at risk of having the scar tissue pull down the kneecap ( it is called patella Baja), and once that happens your options are much more limited. If you go on the knee guru web site, they have a lot of good information ( dr Noyes has an excellent book on this condition that you can access/ order on knee guru). Best of luck to you!!
Oops, one correction; how quickly one forgets! My husband just reminded me that for the first month or so you should be prepared to do the PT the majority of your waking hours. I would do the full extension/ flexion protocol ( which took me about an hour), then I would set my alarm for an hour hence, and then do it all over again. All day, every day for about a month. I actually took a leave from work to keep up with it. Once you get through that period, it goes down to 2-3 hours per day, spread across the day ( say, three times per say), then after month three I probably brought it down to two times a day, and so on. But the first month was pretty non -stop. But again, no weight bearing exercises. The entire protocol focused on flexibility, not strength, for a very, very long time. Weight bearing will cause irritation and regrowth so you have to follow Tim’s instructions to the letter…
Robin-
Thank you so much. I left a message at Dr Noyes’s office this morning. I’m meeting with the surgeon that did my TKR and MUA in April. He knows I’ve been talking with other Drs. I’m curious to hear his thoughts, as well as Dr Noyes.
Hi Maura, lmk how it goes! I’m going to have to get my other knee done eventually so if you find someone in Boston with extensive arthrofibrosis expertise, that would be good to know. Thx
Hi Robin, I live in Boston and had TKR on 7/2023 at NE Baptist. Delibitating arthrofibrosis appeared immediately. I’ve had 4 prior knee surgeries (MCL, ACL and 2 scopes with no scar tissues issues). Had unsuccessful MUA on 9/28/23. My ROM is stuck at 55 but gets to 70 with heavy PT work. I used a Dynasplint for 2 mos, 60-90 minutes 2x with some minor success. I’m scheduled for a revision in April with same surgeon.I luckily found the Arthrofibrosis Foundation site over the weekend!Thank God for people like you who are sharing their stories. I’ve called Dr Noyes’ practice’s number (513-347-9999) six times with three hang ups and three fax machine backgrounds. Can you share an alternate contact #? It appears that Dr. Noyes has retired. Have you seen any other doctors at that practice? I’d like to be able to speak with someone before setting up an appt. Would it be possible for us to talk? If so, I can send you a regular email with my contact info. Thanks in advance. Rick
I live in the Boston area and can recommend two surgeons:
If you think you need an arthroscopic LOA then Dr. Thomas Gill, chair of orthopedics at St. Elizabeth’s in Brighton, MA, is I think very good. He has been team physician for the Bruins, Red Sox, and Patriots, as well as the Boston Ballet. Among other places he trained at the Steadman Clinic in Vail, probably the #1 outfit for treating arthrofibrosis.
If you think you need a full revision then Dr. Matthew Werger, chief of arthroplasty at St. Elizabeth’s is very good. He did my revision, and although I did experience a return of scar tissue, I think that was not the fault of the surgery. He does believe in aggressive PT so you may have to take charge of your PT program.
Where in the Boston area are you located?
…and I forgot to say that Dr. Gill did an arthroscopic LOA/MUA for me about three weeks ago, and things are going well so far. Swelling and pain decreased immediately after the surgery. I thought it would get worse before it got better but it got better before it got better.
Thank you!
Hello. I think I will be the rarest of the rare in here. I had osteosarcoma and a limb sparing surgery to remove the diseased bone.
My knee joint never worked and no one wants to help me. I’m completely devastated.
Can someone please tell me why no one wants to treat this condition?
I had a TKR in April 2021 followed by MUA in July. I stopped making progress in PT in September, and insurance denied my continuing with PT. My ROM has been declining, and my knee is stiff and painful. I’m doing my home PT protocols. I’m not able to garden,hike or cook dinner. I live near Boston,MA
I have had three TKR on the same knee. I have severe fibrosis. I’ve read several articles about a Dr in Chicago who gives a low dose of radiation before the knee replacement to stop the growth of scar tissue. He also uses a hinged implant. Anyone know of a DR in California who uses this method?
Hi Lynn. I think you are talking about Dr Finn. If you scroll down there are several postings about his practice.
Hi Robin,
Yes you’re correct, it is Dr. Finn. Do you know of anyone else who does this procedure? I live in CA and have had no luck looking for a DR. online. I have talked with Dr. Finns office but have not made an appt. for a consultation.
I’ve had this condition for over 18 years. The quality of my life has suffered and I find im not even able to walk up and down stairs without one foot on each step. I live in New York. Is there any hope for me? The treatments seem so intensive and low success? Any good ppl near my ? Ty all in advance
Hi Beth, if you are in New York, you are near one of the most respected surgeons in this area of expertise- he is very active in arthrofibrosis research and repair. David Mayman at HSS.
Does anyone know of a good surgeon familiar with AF in the Raleigh, NC area? Thank you
Hi Ben, there is a guy at Duke who has done a lot of arthrofibrosis work; primarily for frozen shoulder but also in the knee. We interviewed him for my revision surgery and he was definitely top of list ( we ultimately decided to use a surgeon in Cincinnati who is arguably The Godfather of arthrofibrosis treatment following TKR- Dr Noyes). Anyway I believe the surgeon at Duke’s last name is Amendola.
Hi Robin , my name is BettyB . I had a knee replacement done in June of 2019 and two lysis of adhesions done in 2020 and 2021. My knee is full of scare now. It is very painful and my mobility has decreased significantly. I saw Dr Noyes in Cincinnati Ohio and I am contemplating surgery for lysis of adhesions open surgery as the knee is full of scare. What are some of the pre and post surgical treatment that was done on your knee to prevent or lessen return of scare. You input will be greatly valued. Thank you so much and blessings to all of you.
Hi Betty. If you scroll up, I summarized my post op protocol for Maura. Pre op, I took 3-4 weeks completely off. No pt or anything. I knew I was in for a grueling marathon so I wanted to prepare emotionally. Tim ( the head PT at Dr Noyes) would have preferred that I did his pre op protocol ahead of the surgery but I was just too burnt out at that point. But if you end up going with Dr Noyes, Tim will prescribe a light Pt protocol for the weeks ahead of the surgery. And then there is the normal pre op stuff. Get a lot of rest, drink protein shakes, etc. nothing different than any other surgery…..
Hi Ben, I’m in Raleigh too and developed AF after TKR. If you’d like to connect let me know. I’d be interested in hearing about your experience with the Duke doc.
My sister has had two knee replacement surgeries as well as manipulation surgery. She also had a staph infection after her second surgery. She has extreme scar tissue build up, limited mobility, swelling, and severe pain. She has been to several doctors, and they are now telling her that amputation is the only way to get rid of her pain. She is in her 40’s, and this seems extreme to me. Are there any doctors in Pennsylvania (Western) that can help her? She has lost hope.
I’m still recovering from knee arthorfiboris. I broke my femure and the orthopedic surgeon Dr. Silverbeg surgically implanted an orthopedic screw into me knee. I couldn’t bend my knee past degrees. He basically manufactured the condition so he could give me an manipulation. He was then conspiring with the other doctors to give me a full replacement knee surgery. Be vey careful these fraudster doctors in the for profit health care system will do anything to make a buck. For all you know one of them surgically installed something in your knee.
Hi Mike, how did you know the surgeon put the screw in your knee? I’m curious because I am in a similar situation. Is there something in my operative report that would tell me that? Or a certain question I should ask about my xrays? Thank you!
Looking for a doc who can help me with arthrofibrosis following TKR surgery five months ago with current ROM of 90 degrees following hour long workout. Had the manipulation at 8 weeks to gain 10 degrees. I live in Southern Utah, but Las Vegas, Denver, or LA are possible.
Hi Kendall, he isn’t close but if you are willing to travel I would recommend Dr Noyes in Cincinnati. You will need to stay there for several weeks post op to work with his pt team, who are expert in this. You sound like a perfect candidate for Dr Noyes because you are still pretty close to when the arthrofibrosis occurred. If you get it taken care of early, your chances of regaining ROM are much, much higher. He has a very good book on arthrofibrosis which you can access from the knee guru web site. I also had surgical intervention early, and seven months post op I have gained essentially full rom and i am back to hiking/ biking with no problems. Before the revision surgery with Noyes I was stuck at around 85 and it was getting worse, not better. I live in Boston and interviewed around 6 or 7 surgeons around the country. The closest specialist to you is the Steadman clinic in Vail but they won’t do the revision surgery unless they did the original TKR. Ifn my mind, if you have to travel anyway,you may as well go to the most dedicated practice for this condition 🙂
I had a TKR 6 years ago. Knee was fine for 1 year then noticed a knot growing on the knee cap and pain developed. I had a revision at 2 years to remove a heterotopic ossification and lots of scar tissue. Knee felt great, no issues with ROM but 1 year later same thing happened, ossification grew bigger and was very pointed and painful. Scar tissue was causing pain, couldn’t sit with knee bent for more than 5 mins. Surgeon open the knee up AGAIN at the 2 year mark and did a button revision hoping to encapsulate the edge of the patella to stop bone growth. Physical therapy has never been a issue for me, I get to 120 ROM within 2-3 weeks . This last surgery the scar tissue started at a fast rate, my therapist was shocked to see how fast the ossification returned, this time two small pointed pieces are hanging off the edge of the patella and scar tissue is so aggressive. My Dr is at a loss with what to do. I’m taking steroids and did extended therapy but the therapy was making it worse. I make myself bend my knee every day, afraid not too, butit’s getting difficult. I’m looking for a specialist that knows how to deal with these issues. I live in South Georgia, any suggestions?
After a TKR I had heterotopic ossification resulting in the formation of bone inside my quadriceps muscle. After I had a revision, the new surgeon had me on Celebrex for 30 days, and the bone did not reappear.
Some studies have shown that anti-inflammatories, and Celebrex in particular, inhibit heterotopic ossification.
I don’t know if it is the surgeon’s skill or the Celebrex, but it is something to discuss with your surgeon.
Definitely go see a revision specialist, not someone who primarily performs initial TKR surgery. A revision specialist in in the business of fixing problems and is a whole other level more competent to deal with problems such as those you and I have had.
I live near Boston, MA so my surgeon is far away from you, unfortunately.
I live near Boston and am looking for a surgeon who specializes in AF. I fell 4 months ago on my right side incurring massive soft tissue injury. After seeming to improve my arthritic knee started getting more painful and stiff. I was told Af had set in. PT made it worse.
A course of steroids, two intrarticular injections of steroids and if hyaluronic gel did nothing. Now I am house bound and severely limited due to pain when I walk. Do you have suggestions as to whom I should consult? I’ll go anywhere at this point.
Carolann, see my reply above to Maura Lundie recommending two surgeons in the Boston area.
Did anyone else have good ROM at first after TKR and then have it decrease? Three weeks PO I began having violet cramps that caused my recovery to go backwards. I went from 0/110 to 30/85 at 4 months PO. I believe the Cymbalta I was taking for arthritis played a big role as when I forgot to take it the cramps stopped. When I took it again they came back immediately.
Does anyone know of a good surgeon familiar with AF in the Northern California area? Thank you
I have an appointment with Kaiser Dr. located in South SF on Jan. 4th. I can let you know after I see him. Are you looking to find someone within your insurance?
Yes I am. Kaiser also.
Any recommendations for doctors/surgeons in Sydney Australia?
I am in Arkansas and had a TRKR on 9/22/21 My knee was stuck at 40 rom and stiff and painful so my surgeon did an MUA on 10/22 now I’m stuck at 80 rom and he sent me home with a passive motion machine after the MUA plus PT and doing PT at home . My knee won’t move and it’s really painful in fact I can’t walk right because it won’t bend enough ..I’m going to see the surgeon tomorrow and I think he’s going to say surgery to remove scar tissue. Help
Does anyone know of a specialist in Arkansas ? Or have any suggestions?
Thank you
I do not know of any drs in your area, but I have a similar situation if you’d like to share ideas.
LTKR on 8/23/21
MUA on 10/25/21 – it did not improve my ROM
My knee is stiff, painful and stuck at 30/85
Not being able to straighten my knee is the worst part, because I cannot walk.
Right knee meniscus tear fix 7/2018
Tkr 7/2019 developed AF 6 weeks PO
Lysis of joint 6/2020 at Steadman Clinic in Vail Co. the best you can get. Great rom at 5/115 until few months out PT disobeyed doc orders for range of motion only therapy. No squats allowed. She did it anyway. Now rom is 5/85. Val doc said another surgery could result in less rom.
I have lupus. Many scientific articles point to over activation of TGF b1.
Steadman is fantastic. If you can do it, try lysis where fibrotic tissue is removed. He had me on a medication too to stop the buildup. I was fine and he was happy with my outcomes Then the PT who happens to be my employer ruined it with her disobeying him. Errrr
what was the medication you were on?
Losartan
Anyone with arthrofibrosis followed by TKR have a consult with Dr. Mayman at Hospital for Special Surgery in New York City? If so, what was his recommendation? Thanks.
David Mayman has an excellent reputation. Is very involved in arthrofibrosis research. When my right knee goes ( which is terrifying given the experience on my left!) I will definitely be using him for the TKR. ( I am assuming Dr Noyes will be retired by then so I have been thinking about “ life after Noyes”- haha). He and his team do web sessions on various topics that are extremely informative as well. We have a NYC office and several of my partners have used him and his team for both hip and knee replacements, all with positive reviews of the care.
Thank you for the information.
I knew Finn was a crap-shoot. And I accept full responsibility for the outcome.
But his “team” are a bunch of weirdos. Finn & his minions are myopic. Like most “specialists” they work in a bubble.
The implant he puts in is enormous and after you get it- there is no going back.
When he put his “Finn Knee” (when I was opened) I only had 120 degree ROM.
I can NEVER get better than 120.
Get a second opinion from Dr. Frank Noyes- because they are watching the new stuff coming down. They are open to new options.
Dr. Finn believes he has found the “answer” and is not open to recent findings.
I would have been better not getting a “Finn Knee.”
I’m permanently disabled thanks to his “Finn Knee.”
I have never written a bad review of Dr. Finn, but after reading your comments, I can’t let it go. I also thought Dr. Finn would be the miracle doctor that would get me out of horrible, 24/7, pain. The
surgery/Finn Knee, was unsuccessful. I had the original TKR in New Jersey – Dr. Pizzuro destroyed my knee. I was black& blue from my waist to my toes. Horrific pain for months. I still have constant pain. During staple removal, I actually saw stars. The nurse told me I was being over-dramatic. p.s. – he’s no longer practicing
Then 2 revisions. the last being in Chicago. At my initial visit with Dr. Finn I absolutely told him that I had a revision and scar tissue removal, and an MUA, but within 2 weeks my scar tissue builds up and cannot be budged. He did not believe me. As expected, scar tissue developed….tremendous amount of pain, Dr. Finn preformed a MUA….he was so determined to bend my knee that he tore a muscle in my knee. I was in and out of the hospital 3 times after that because the bleeding caused by that torn muscle would not stop. THEN Dr. Finn came to my room in the hospital, ON A SATURDAY, told me he needed to stitch the torn muscle, and so that I didn’t have any anesthetic medication, or it just didn’t work. It was so horribly painful! I went to Chicago from New Jersey. Each time I spoke with Dr. Finn, he said , I” I know you want to get back to NJ.” I ALWAYS responded, “if you can help me, I will stay as long as needed.” He could not admit that my surgery was a failure. I stayed in a hotel in the Chicago area for 6 weeks! I think his Office Manger’s name was Betty….dealing with her was ALWAYS an issue.
Not to lay it on thick here, but when my husband and I interviewed a bunch of surgeons for my revision surgery ( see prior posts) we would ask them their opinions of other surgeons in the field. They were all very careful not to directly criticize another surgeon, However, it was quite clear that the consensus was that his approach was too experimental/ unproven/ aggressive. We actually cancelled our planned consult with him as a result.
Sadly, there currently does not exist a “ cure” for this disorder, and all the surgeons were quite clear that any intervention was “ last resort” with no guarantees. Given that state of play, it is very, very tempting to try a new approach which appears to have promise. Unfortunately, after hours of research and given my own experience, I think surgical removal / release of the bound -down tissue, followed by intensive ( but very light and targeted) PT, combined with anti inflammatory meds , is the best we have at the moment. It isn’t a “ cure”, but at least as the scar tissue grows back ( and it absolutely will to some extent or another), if you keep it stretched and pliable, you will have better ROM and less pain ( but you will not regain full flexibility or be pain free). It is hard to accept this, but I honestly think that is where we are. That said, I am bike riding and hiking- I have to take rest days in between, I am still icing/ dealing with pain and doing pt, and when really, really bad, I’ll do a course of prednisone. Not what I was expecting or hoping for when I got the initial TKR, but it is what it is…and better than nothing!
Thanks Robin you are most informative.
I reached out to Dr Noles clinic for an appointment….at
https://noyeskneeinstitute.com/ and referenced you. Donna responded almost immediately saying your a good example of there program!
Already reading Dr Noles AF book on Amazon………..wow learning a lot more.
Am 15 months out from TKR and suffered AF since. Now have a growing concern that I need to get active in PT/AF treatment so the AF does not get much worse..
The TKR also accelerated my Peripheral Neuropathy limiting PT.
My Peripheral Neuropathy is now improving from MSC Stem Cell Treatment
in Mexico (Oct 2021). Also had an injection of collagenase and hyaluronidase for AF….in
Mexico (Oct 2021) but this did not have big effect.
My wife urges me to not mention any treatments in Mexico……it pisses
American Doctors off……I never question my wife….???
I live on an Island in Washington State but AF treatment even in Seattle has not been available.
I moved to Cincinnati for the summer to have my revision surgery with Dr Noyes and the physical therapy with his in -house pt team led by Tim. It has been a HUGE amount of work but I have no regrets. Just got back from a nice bike ride and have taken up yoga (modified so I don’t have to kneel :)). Before I had the revision surgery, my knee was completely bound down, my leg was stuck in one position, and I had very limited mobility. I really thought my life was over as I knew it! I truly believe that traveling to the right specialist and being prepared for a three to four month dedicated recovery is the way out of this. It won’t be easy but it is worth it. Ps I just weaned off lyrica which I was taking for the neuropathy; the pain kind of just resolved on it’s own; I think I dodged a bullet on that one! Best of luck to you and say hello to Donna and Tim!
Sorry, one more thought. Against all advice, I actually stopped PT for four weeks before my revision surgery. It wasn’t helping at all, and I felt it was just irritating the situation. My leg was stuck, and pushing through it just seemed counter- productive. But most importantly for me, I just needed a mental health break before the second surgery. I knew it was going to take every ounce of resolve to recover from yet another major surgery, plus the non- stop PT protocol afterwards. For me, it was the right call. I was in the right frame of mind going into the surgery, and worked on Tim’s PT protocol religiously and with a positive attitude. I think for me, a little break beforehand was the right call…( speaking of spouses, my husband disagreed with me on that one, but I am glad I ignored him!) Just some food for thought…..:)
Ps, I just returned my Flexinator this week ( my revision surgery was in July); I no longer need it! I’m at 120-130 consistently without any pain in the bend. Still general pain after a hard work out, but I’ll take that. I never thought this day would come. So stick with it; there IS light at the end of the tunnel….
Here is a most informative Arthrofibrosis research article.
“Pathological mechanisms and therapeutic outlooks for arthrofibrosis”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6433953/
1. Fighting inflammation is a primary element of Arthrofibrosis Treatment.
2. Two types of Arthrofibrosis; active arthrofibrosis and residual arthrofibrosis.
3. Women have a naturally superior immunity response but once the immunity response becomes more unregulated become more prone
to OA, TKR, etc. Is Arthrofibrosis different in men than women?
4. Summary of Treatments: very extensive.
Thank you, very helpful! A few thoughts:
-Consistent with their observations on inflammation, Prednisone does indeed do wonders for me (but I stopped it due to concerns over long term use). My surgeon prescribed fairly high doses of Prednisone immediately after the revision surgery, however, and he also had me on weekly injections of anakinra ( Kineret), which is an interleukin-1 blocker, for a few months after surgery. That now makes complete sense to me!
– At my surgeon’s suggestion, I am starting to work with a rheumatologist to address ongoing and underlying inflammation concerns ( which was also discussed in the paper). The rheumatology community does not currently seem to be particularly well educated on arthrofibrosis. I plan on forwarding this article to her, and suggest others do the same if they are working with specialists who are unfamiliar. It dawns on me that we need to advocate for better understanding of this condition within the medical community ( particularly if, as the paper posits, arthrofibrosis is more common than the existing studies suggest).
-One thing that caught my eye after reading the paper- I had a collarbone break around 5 years ago that required a surgical plate. Although I followed the PT religiously, I nonetheless developed frozen shoulder. I had thought it was just “ bad luck” at the time. But there MUST be a connection here. Note I don’t scar particularly easily or develop thick scars on my skin, which is something medical professionals always ask.. This got me wondering:
-how much more research is needed to identify patients BEFORE surgery who are at risk for a fibrotic response?
– could a predisposition for developing arthrofibrosis in the JOINTS Indicate a higher risk for developing fibrotic responses ELSEWHERE in the body, such as the lungs?
These researchers appear to be trying to move the needle on these questions…
Thx
Looking for Doctors who treat Arthrofibrosis in Texas. I live near Austin.
DO NOT GO TO DR. FINN
If you do- you will be DONE!!!
Ask ANY Orthopedic Doctor….
Thanks for the heads up.
Hello,
Does anybody know where Dr Steven Singleton is going next?
As of December 2021, he will no longer be practicing at Texas Health Dallas.
Trying to get an appt with him, but he is no longer accepting patients.
He is in Colorado.
I am in Colorado too. Is Singleton recommended?
Try Steadman Clinic in Vail. I went there for AF and it was great. It was successful until my PT who happens to be my boss disobeyed his orders. Most PTs are too aggressive. If I redo it may get worse. It’s an immune system glitch that causes this.
Candice please tell more about the immune system glitch. This is what I suspect with myself and am trying to figure out just what it is. What type of doctor (rheumatologist? immunologist?) can help with this?
sorry Marie. I just saw your post question. I have lupus and hashimoto’s disease. Two types of fibrosis occur…one stiff knee from not moving enough, etc. the other is from immune system, Tcell, cytokines, etc. that infiltrate the tissues in an attack type of deal.
My knee is bad still and there’s no hope to get better. If I do anything it may be worse.
But, Stedman in Vail, CO is good. It’s kind of a roll of the dice if it’s autoimmune. Maybe get tested for autoimmunity?
Best to you!
I done living like this. It would be better to have my leg amputated.
Completely understand.
Has anyone had right patella ORIF? Broken left shoulder same time—-sleep been poor, very poor
Been 10 months and had to change careers. Poor post surgery care, and sorry to say but Ortho was blase about my future. No insurance right now but been stretching for 11 months.
I’m very concerned about scar tissue and literally been doing online research for almost a year
Thanks for listening
Anyone have experience with stem cell therapy for treating arthrofibrosis of the knee
I just had cord MSC Stem Cell treatment and
collagenase and hyaluronidase injection for Arthrofibrosis,
in Puerto Vallarta, MX, Oct 2021.
After three weeks……….my legs are stronger and the ROM is slightly better. The Stem Cell treatment appears to really be helping my
neuropathy.
Does anyone here know the percentage of tkrs that wind up with at
That’s a good question. I’ve been digging around for this info also. The best that I can come up with is in the neighborhood of 1.5 to 5 %
Does anyone here know the percentage of this that wind up with af?
Has anyone ever heard of a person with AF in their knee after TKR somehow experiencing a loss of scar tissue over time so that their pain goes away and flexion improves? If so, any idea what causes it to go away?
After reading some of the stories here, I consider myself lucky (I think). I had a TKA-Right about 8 months ago with a surgeon who used a Stryker prosthesis in a robotic assisted surgery. Done at an ambulatory surgery center (due to Covid – my option) and I went home after about 15 hrs. Started home PT the next day. No CPM (continuous passive motion)machine – this surgeon didn’t believe in the benefit. So far -so good.
I had trouble with flexion right from the start, but the home PT really pushed me and I did the best I could. Did home exercise as prescribed. Home PT kep me for about 3 weeks (first week – everyday, after that 3x/wk for two weeks) until I could get a OPD PT appointment. Then did OPD PT 3x/wk for 2.5 months. Got to extension +0 deg, Flexion about 110 deg – pushing it with pain.
After that, I’ve worked out on my own (recumbent and upright bike, stretches, leg curls etc etc).
Current status: no edema, no pain – but flexion only to about 110. Can do most things – but descending stairs is painful still – but I can push through it.
Compared to my other knee, done 10 years ago in NYC at HSS) this one is very stiff. The previous knee (left) is perfect — ie. excellent flexion – no pain – no restricted ROM.
So, I’m still working my stiff knee – but don’t seem to be able to get the stiffness out. Still painful descending stairs.
I’m considering arthroscopic lysis for fibrotic scarring, but unsure how much of the problem has to do with scarring. R/O misalignment. Pretty sure there is no infection or loosing of components (based on xrays).
A couple of Q’s:
1) is there a definitive way to determine what specifically the problem limiting ROM is — fibrosis vs misalignment.
2) How much is a lysis and gentle MUA likely to help someone like me with 110 deg already — could it make it worse???
3) Anyone know of an MD who is REALLY specialized on a differential diagnosis of stiff knee etiology — and what the recommended course of action is for each of the causes. I get the sense from reviewing the literature that it is pretty difficult to impossible to nail it down with that level of specificity.
Any comments would be appreciated.
I would think the scans would detect a misalignment ( unlikely with a Stryker, I would suspect?). If AF, probably too late for MUA; I would think the tissue would have hardened and set by 8 months. Also if AF, any surgical intervention risks a cascading effect, which could make it worse. I have to say, if were getting to 0/110 without substantial ongoing pain, and if at 110 you can ride an upright bike (general assumption is you need 115 for that), I would lean toward sticking with PT rather than risk another surgery. Have you tried the ERMI extensionator device? I find this to be incredibly helpful in increasing/ maintaining flexion. You can rent it with a prescription, although it isn’t cheap and insurance doesn’t necessarily cover it. Another stretching exercise that helps me ( full disclosure, I made this one up) is to sit on a pillow, wrap weights around your ankle, and from a sitting position ( leaning your back against a couch), bring your knee up toward your chin, wrapping your arms under the thigh…and then gently release the foot to a hanging position…then just let the foot hang for as long as you can tolerate it….I started at 3 pound ankle weights and now use 8 pounds, which seems to be an effective hanging weight for me. I’ve gotten a pretty good result with this ( and it costs no more than the cost of the hanging weight)…
I am interested in talking to you more about your experience at the Noyes Clinic, if possible, since it sounds like we have had similar knee issues. Your experience gives me some hope for resolving some of my issues.
Happy to. Just got back from my 10 week post op. Things are going pretty well I think. I have been cleared to start a more aggressive activity level ( primarily cycling, which is my goal to get back to). As they warned me, it has grown back somewhat, despite the incessant pt, Kineret and prednisone. But the pain and range of motion is significantly better than before the surgery, where my leg was essentially locked in place and I was in a ton of pain all the time. The current plan is do redo all the scans about one year post -op and see if we need another intervention at that time. If I can maintain where I am at, I probably won’t do another surgery, and if I do, it would likely be an arthroscopic “ clean up” rather than a full open knee. I think the one “ headline” is that it is never going to be perfect, and it will be a bit of a lifelong challenge to maintain the progress I have made so far. I’m going to need to accept some level of pain and continued pt if I want to be as active as I plan on being. But it was definitely worth it, and I continue to be pleased with the care from Dr Noyes and his team. Tim, his head pt, is superb and has developed my cycling plan in detail. He is always available to consult if I have questions, and he stays in touch with my home pt pretty regularly. Really above and beyond….
Colleen, I should also add that I started working with a pain management doctor here at home which has also proven to be helpful. There actually are some pretty effective treatments for pain management besides opioids. They helped me wean off the hydromorphone without incident and we have been exploring some alternatives which are actually helpful.( Pharma treatments but also nerve blocks and also alternative stuff which, what the heck, couldn’t hurt :)). I am also scheduled to work with a rheumatologist to develop a long term plan for managing the inflammation, which is obviously related to the pain. ( these were Dr Noyes’ suggestions). I am currently cycling on and off prednisone. There are apparently less draconian, treatments to consider. I know you are thinking “ this is a full time job!” which it kind of is. I’m on a leave of absence from work so that I can really tackle this head on. But I started all of this with the goal of going on bike trips and walking trips around the world with my husband post- retirement, and I’m not ready to give up on that yet. Hopefully I’m not deluding myself; haha. If I were happy to settle for a more sedentary lifestyle, I wouldn’t need to do all this other stuff; so it kind of depends on what your goals are here to determine how much of your life you want to devote to managing the problem…
If any of you have not encountered Bonesmart, I recommend it. That’s where I first encountered others who knew what I was going through with Arthrofibrosis in 2011. The first year was hell. Couldn’t drive for 3 months, PT and doctors treated me like I was the problem not the suffering patient. Met up with another PT who started me on a take it easy workout rather than a strenuous one and I finally started to improve. I really have pretty good ROM, but I still have a measure of pain. That knee is my stronger knee, now the other one is saying it’s my turn and I’m scared stiff.
I’ve been getting PRP and ozone injections in it for about 8 years. It’s probably kept me from a second TKR, but it is limiting my activity – too much so, now. Do I go to an AF expert for my TKR or take my chances locally? I welcome your comments.
I went to Steadman in Vail CO. Long story. But aggressive PT must eliminated. Steadman gets this and do a good job.
Am a 13 months out from TKR with a ROM of 70+ still and found bonesmarts about 4 months ago.
I also agree now that light Physical Therapy is good but pushing through the pain PT is not the best remedy and causes unneeded inflammation.
Was very interested in the PRP approach…….University of Washington
Sports Medicine refused me PRP treatment as did my recent Puerto Vallarta
Orthopedic Surgeon.
Now looking at the enzyme injection approach….. that eat or break up
scar tissue.
Can you say more about the enzyme injection treatment?
Are there any orthopedic doctor’s/ surgeon’s that specialize in removing Arthofibrosis after TKA? If there is l need his name and phone number.
Frank Noyes in Cincinnati. I have ( had?) severe arthrofibrosis following TKA and interviewed multiple surgeons throughout the country for my second surgery. Dr Noyes and his team are highly experienced with this condition and the PT is fully integrated post op, which is a huge differentiator. I actually moved to Cincinnati for a month for the surgery and to work with this team post op and have no regrets. I am now 6 weeks post op and went from 9/80 degrees to 1/115-120 degrees. As I am sure you are aware, this is a very long road. I will be doing intensive PT for many, many more months and there are no guarantees. But I feel I am in a good position for long term success. Note you will need to work with a home PT who is comfortable coordinating with Dr Noyes’ team when you return home. They have a good referral program for this.
I am 1 year out from total left knee replacement and have arthofibrosis. I live in Michigan and am willing to travel for help.
My current flection is 83° and extension is 8°.
Did you research doctors throughout the country before choosing this doctor or were you refered?
Hi, we researched specialists together with the surgeon who did the original knee replacement ( which was fine, by the way; it is unclear why arthrofibrosis developed in my case but it was quite extensive- five layers thick as it turns out). There is a clinic in Colorado that several folks mentioned here but they will not do the revision surgery if the TKA was done elsewhere. We interviewed a guy in Chicago at Rush who is using lasers as a supplement to surgery but it is still quite experimental. There is fellow in HSS in NYC that several folks have mentioned here who seemed fantastic but he didn’t have an integrated PT protocol, which I think is very important. We also interviewed a guy in Boston who was more of the “ yeah I can clean it out” variety but didn’t seem up on the most current research. And finally we met with a group at Duke, who developed the Kineret drug supplemental protocol that Dr Noyes also uses- they were a very close call to Dr Noyes.. We chose Dr Noyes because he had the most specific experience with this particular condition, was used to dealing with patients from out- of -town and was the driver behind much of the current research on the condition; also PT is incredibly important and he was the only arthofibrosis surgeon with a fully integrated physical therapy team. If I may make an ( unsolicited) suggestion here- time actually really matters with this condition. The longer you wait, the more problems you may potentially face ( the kneecap will eventually pull down and the muscles around it can shorten and atrophy, etc). It probably makes sense to think about engaging with specialists sooner rather than later if your goal is resumption of function in the leg ( which is somewhere around 3 and 110/115 degrees, give or take). Good luck to you, you will be in my thoughts!
Some additional thoughts. We found that these specialists were more than happy to engage with us. We really just cold called them directly and then followed up with the surgical record. One doctor was willing to do a telehealth meeting via zoom, but most want to see your file first, and if they feel that they can help, you will need to go see them. My original surgeon helped vet some names for us but most of the leg work we ( my husband and I) did on our own and we really didn’t encounter any problems accessing the specialists. We probably went overboard on the number we researched, but we learned a lot. By the way, there are some excellent articles on this condition and also the names of specialists on a web site called kneeguru I hope that helps…
Thank you to much for all of the excellent information. We have also looked at some of Ihe same doctors you mentioned in your post.
We live in west Michigan and there are a few really good doctors in Grand Rapids that I might meet with.
Did you have any prior injuries to your Knee or was your problem caused by arthritis?
I had a prior injury to my left knee 35 years ago which complicates my problem.
We are willing to travel to any location to get the best results.
Again, thank you so much!
Sounds similar to my story. I had injured the knee as a child ( car accident) which resulted in arthritis as an adult. The bone on bone pain had started to restrict my hobbies ( cycling and vertical hiking), so I decided to get the TKR. Unfortunately, with the AF I am now having to revise downward my long term objectives. But if I can maintain 2 and 115/120 degrees, that should be more than sufficient for cycling and non- vertical hiking. It is tough going in for an anticipated outcome, following all the recommended PT protocols, and ending up in worse shape than before the TKR! But I think with the help of a real specialist surgeon and ( equally important) specialist PT, it may be possible to resolve the situation to some acceptable outcome. I certainly hope that is the case for us all…Please don’t hesitate to reach out with any further questions – at this point I (and others in the patient community) know more about this condition than your average orthopedic surgeon out there!
Thanks for your information… would you be willing to share who you saw at Duke?
Dr. Amendola. He is at the Duke Sports Injury and Orthopedic center. They actually developed the Kineret protocol in the context of frozen shoulder. He also has an “ imbedded” PT team, which is key. He is also younger than Dr Noyes, for what it is worth ( Dr Noyes must be at the end of his career). He would definitely be a good choice.
Hi Robin
I have been reading your posts and you sound like you have done a ton of research and are very knowledgeable about AR.
I am hoping you would give me your opinion on my AR after TKR 11 months ago. I have about 110 degrees but that is pushing it with a fair amount of pain. I can’t walk very well and the more I walk the more pain and stiffness I have. My surgeon keeps acting like “its going to be fine”! I’m considering scar tissue removal but I’m wondering if it will be worth it. I am or should I say I was very active before the TKR. I’m 66 but everybody tells me I work like I’m much younger. I’m the type of person that has to be up doing something. I want to ride a bike so bad since this and of course I can’t. I still do everything I can, I don’t wimp out of working on our farm. I run the tractors, chain saws, etc. Everything I try to do is a chore because that knee just doesn’t want to work. I’ve had 2 second opinions and they both said revision but they act like they don’t even know about debridement/scar tissue removal. One said I could try to find someone to do it if I thought it would help! I live in NE Pennsylvania with no good doctors around. Can I ask what your experience was? Did you have TKR and then scar tissue removal? I just found this website and I’m so glad I did. I was going to try the Steadman clinic but not sure I can get in. What do you think?
Hi Vicky. I got a lot of info from Dr Noyes’ book which you can order from the knee guru web site. I’m not a doctor, but 110 degrees with pain almost a year out? Something is off. I think some surgeons ( including mine, originally) are hesitant to diagnose arthrofibrosis because they somehow feel it reflects badly on their work ( which is not necessarily the case at all). If I were in your position, I would probably make an appointment with Dr Noyes or David Mayman at HSS in NYC pretty promptly. There are secondary issues that can sometimes occur with extensive arthrofibrosis that is left unresolved ( sometimes called patella Baja) . While rare, it is something to be avoided ( basically the scar tissue starts pulling the kneecap down and out of alignment). So yes, I am no expert here but if I were in your shoes I wouldn’t wait and would go right to the specialists. In my case, I met several doctors who were more than happy to do lysis of adhesions arthroscopically. Dr Noyes took one look and said I needed a full open knee because my kneecap was completely bound down and at risk for further complications, and got me in the next week. His PT protocol was extensive but very light and targeted ( mainly stretching to achieve ROM, using the flexinator and hanging weights- no heavy PT) I’m still doing the PT protocol and probably will for the foreseeable future. I’ll still have to deal with pain after overdoing it, especially. But I’m taking long walks, riding my bike and my flexion is routinely at 120 ( was at 85 before). So I’m glad I didn’t waste time with the less specialized folks. I hope this helps!
It’s been 10 years since my first knee replacement. I have two more replacements and several other surgeries to remove scar tissue. I’m in pain 24/7. I assume I’ve just gotten used to my pain and only acknowledge it when it’s severe or when somebody asks me about my condition. My knee is extremely swollen and my range of motion is not where I need it to be to be out of this horrible pain. I never found a painkiller that helped my pain. After each surgery I took painkillers just to help me try to fall asleep. none of the medication ever took my pain away. I used to be very active. skiing biking, going for long walks, enjoying life, etc. I did All the exercises I was instructed/taught to do. I ve tried so many treatments that never worked.( FSM, trial study using embryonic fluid to ward off scar tissue forming after surgery, was it laser for pain relief, etc. etc. actually off the top of my head cannot remember all the tricks I went through somewhere I have written down everything,unfortunately nothing has worked. at this present time my knee is always hot, sometimes just warm, but never cool to the touch. I had a hip replacement December 20 20. Because I was favoring my hip my AF knee has gotten worse. My hip seems to be about 90-95% better but I still have some pain in the joint. I’ll take this minimal pain especially compared to my knee. My AF knee has changed my life, causing me depression and anxiety, Made working very difficult, although I have since retired earlier than I thought at age 65. If I really think hard about it all, I get very upset, but this is my life until I pass. but what I’m most concerned about is what will happen once I get older and as your body ages you can’t do as much exercise as you did before and if that happens, which will probably happen, I don’t think any of us with this day AF condition, need even more pain. I so wish I did not have Arthrofibrosis. Except for the first doctor who did my first implant, who was awful, I’ve been to top-notch doctors. including Dr Finn,m in Chicago, who unfortunately was unable to help me eventhough I stayed longer in Chicago than I thought I would be there. Anything he suggested I would try but my body did not accept it. I also went to a wonderful doctor in New York City at HSS, Dr David Mayman. ALTHOUGH HE TRIED, he wasn’t able to help me with the AF.(I did go to him for my hip replacement however ) I am disabled, in pain at all times, my knee is hot / warm to touch all the time. when I wear pants, the severe swelling of my right knee makes my pants much shorter on one side of my body than the other, or sometimes pants don’t fit in the weakest they’re too tight on the AF side.p I just hope that sometime in the near future someone somewhere will come up with a cure for AF. I would go anywhere do anything if I had a chance to cure myself of AF. I m sorry for those of you who have AF and in addition other conditions such as CRPS, etc Every so often I go on to this AF foundation site, which I did today, because it somehow helps me but I know other people are are in the same boat as I am. of course it doesn’t take any of the pain/discomfort away nor does it help my disability. It’s just nice to know that other people know what I’m going through. people who don’t have AF cannot relate at all! To all of you, best of luck and let’s hope/pray/dream and and anticipate there’s an cure for us sometime soon!! thank s for this website for letting me vent.
I had my right knee replaced 2 1/2 years ago. My recovery from the knee replacement surgery and manipulation was very slow. I managed to get to a 75 degree ROM about 2 months after the manipulation, and 85 degrees 3 months after. I changed Drs and was immediately told that I had Arthrofibrosis. Pain and swelling with limited ROM pretty much summed up the last 1 1/2 years of my life.
In early June of this year, I found the Hughston Clinic and Dr Flandry in Columbus Georgia. I committed to spending a month up there. He opened up my knee and cleaned out a ton of scar tissue and did a manipulation. In the next 3 weeks, I had 3 more manipulations. I now have my ROM up to 77 degrees literally less than a week after my last manipulation. Lots of pain and swelling too. Going to daily Physical Therapy. Still under Dr Flandry’s care. I think I may have finally turned the corner and believe that when my recovery is completed that I will be much better off with less pain and swelling. It has been difficult putting myself through this again. But living with chronic pain is difficult, so I hope I made the right decision. God Bless Dr Flandry and the Hughston Clinic in Columbus Georgia.
Please keep us updated- I’m willing to go anywhere!
LAL,
Like you I had a series of knee operations, a total of 16 to my right knee. I got infected from my knee replacement. I had my knee removed and have an antibiotic spacer after the infection was cleared up. I was on Vancomycin for several months. The local doctor wanted to do an above the knee amputation. I had an MUA done and it tore my leg up. Like you I found one of the best orthopedic surgeons in the country at HSS, Dr. David Mayman. When taking out the replacement, he would take out as much scarring as possible. Most orthopedic surgeons don’t want to deal with it or know how to deal with it. Dr. David Mayman was truly the exception. I’ve gone from having one doctor that wanted to amputate my leg to having fairly good range of motion and I still have my leg! I still have arthrofibrosis, but have learned to live with the pain. If anyone has any questions, don’t hesitate to contact me or definitely reach out to Dr. Mayman.
Has anyone used a Flexinator?
Hi Jennifer, wishing you all the best in your post op rehab! I used a flexionator a few times during my post TKR rehab during my PT appointments at the OS office. I don’t know if I would recommend… are they recommending this for you?
I use the flexinator 5x a day. I worked up to a ten minute hold per session over a period of a month or so. The key is to stretch first and resist the temptation to crank it too hard; this is a marathon, not a sprint. I do hanging weights above the knee with an elevated ankle first to warm up and work on extension. Together these exercises seem to be helping. But definitely a time commitment. I ice after each session and use anti inflammatory meds ( Celebrex)
Day 8 post-op. No improvement on ROM- but too soon to call it.
If anyone has surgery @ Weiss Hospital: get Bose noise canceling headphones.
It’s right next to freeway and the natives love making as much noise as possible with their motorcycles. Cinco de Mayo was especially loud.
Things like that are really irritating when you are in pain and can’t sleep.
Hopefully it will be worth it soon!
Been 1 1/2 yrs since both knees were replaced. Therapy got my knees to zero but only to 85 degrees flexion. Had one manipulated after a year which is not the norm, it was successful to 120 degrees, but never after that, back to therapy still only to 85 degrees. My knees are always stiff and often hurtful. I sit in my liftchair recliner most if the day with a pulsing vibrator on them to help with the discomfort and tightness, but a hot tub or hot shower gives best relief. My hot tub is older and broken and being on disability I really cant afford a new one. There are times my knees arent that hurtful and other times very burtful. I just bought CBD cream becsuse my Dr does not slliw me to take NSAIDS so I dont get kidney failure and die, years of then put a hurting on my kidneys. CBD suppose to be inti inflammatory but not yet sure of results. Dont feel like is is as good as a hot shower for relief. My one surgeon said i need to live with the pain, scar tissue grows back if removed, other surgeon agrees. A miserable way to spend the rest of my life frankly.
I did it! Anyone who spent time in the Westley Place(?)
Lemme know how their Internet is.
I have special education students who need help-
The WiFi @ Weiss Memorial Hospital isn’t great, but the people are so nice .
I’ll let you know how recovery goes.
I just got the shot for the thing that has been an issue.
My knee hurts, my back hurts, my arm hurts.
We have enough pain and I wouldn’t do it again or recommend anyone else with AF participate.
Everyone else can get it.
Unfortunate bad reaction! I have AF in 1 knee, got 2nd Pfizer vaccination in February and no reaction at all to either. Generally, I’m the one with the bad luck. Hope you are feeling better now.
I suffer from arthrofibrosis and looking for medical support. I am in Adelaide Australia and unable to find the expertise I need.
My history.
I injured my knee Feb 2017. I had 2 arthroscopies that year June and November the latter I had medial Microfracture .
My knee became worse. July 2018 my one gave way going down steps causing a subchondral non displaced patella fracture. I developed chronic quad tendonosis.
My knee became worse and in Feb 2020 found a surgeon who would take my pain seriously. He performed a diagnostic arthroscopy in March 2020. I was then booked for a PKR but discovered I am allergic to many metals especially Nickel, cobalt and chromium and proceeded to a total pure titanium TKR in May 2020.
At 4 1/2 weeks PO a Physio forced my knee straight causing ligament damage a restricting my rehab and movement for 3-4 weeks. My ROM went from 97 to 80.
August 2020 I had an arthroscopy, quad tendon release and MUA. I was told to exercise aggressively to keep scar tissue at bay. (This I now know was not good advice). I reached about 110 but that quickly went backwards and was in pain. I then had a cortisone injection which did little, then 3 courses of shockwave therapy. I kept up my rehab. My knee became worse and was hot most of the time. I pushed for answers and my surgeon became concerned about infection so in March 2021 I had another arthroscopy, synovectomy, biopsy, quad Percutaneous pie crusting and MUA. My ROM went from 90-115 and feels good although sore. It’s been a very tough road and mentally draining at times.
What is very clear to me is that very few medicos understand arthrofibrosis. My surgeon told me that the scar tissue will probably come back which was devastating to hear. I am 3 weeks PO and want to get this right this time and looking for help.
Sorry about the long post.
My New Knee
Injury January 14, 2013
Knee Arthroscopy- Repair Torn Meniscus
Performed 3/8/2013
PRP Injections
Performed 8/2014
PRP Injections
Performed 9/2014
PRP Injections
Performed 10/2014
Knee Arthroscopy- Remove 110 pieces of loose cartilage, and lesions, irrigation
Performed 06/25/2015
Knee Replacement- TKR Performed 04/26/2016
Knee Revision- Remove excessive scar tissue
Performed 11/26/2016
Manipulation (MUA)
Performed 8/25/2016
Knee Revision- Replace tibia device, replace button, remove scar tissue
Performed 4/25/2017
Suggest freezing knee permanently and removal of leg above the knee
Pain Management :2018
Genicular Nerve Block
Gabaphentin, Meloxicam, Cimbalta, Oxycodone
Suggested Spinal Stimulator
Gave me two new devices:
SAM- placement of two electro pads placed on knee
OrthoCor- knee cuff with two magnetic pads inside
Neither one worked.
Insurance company constantly insists I be taken off Oxycodone
Final Results- AF & CRPS
Perineal Nerve Injury and Infrapataller Saphenous Nerve injury.
Devices: CRM Machine, Ligament Stretch Machine, Pain Blockers, SAM Unit (ultrasound) , OrthoCor (microwave)
I can no longer work, drive, enjoy golf, I do not even leave my house anymore, and I am only 60.
It is a very debilitating condition. I rarely sleep well and I want to cut off my leg most days, and want to end my life on the other days. I am under a psychiatrist care, so no, I am safe and will not do anything silly. But I cry all the time. And now my left knee is worn down from over compensating……
I know the feeling. I had top surgeons but no advice that scar tissue could change everything as it has done to me. I had s knee manipulation but dud nothing after leaving the hospital, scar tissue grew back jyst that quickly. My dr afraid surgery man make it worse. I had hurtful knees, not disabling knees it ruined my life snd retirement. My best part if the day is at night after my sleeping pill kicks in and im dead adleep.
Have you tried dynasplint? I have been only dealing with this for 3 years on my shoulder however I do feel you. Most days spent at home. I am 26 years old. I feel like my youth is taken from me. I am hoping dynasplint will be the answer.
I had my first ankle surgery on June 14, 2018. After the next 2 years I underwent 5 more and ended up with a total ankle replacement. The arthofibrosis limited almost all dorsiflexion. I have very minimal plantar flexión. Attempting any range of motion is truly excruciating. I am 23 years old. I was once an athlete and now I’m in pain 24/7. Does anybody know any positive outcomes from low dose radiation? It’s all I have left to try
Since my TKR 2 years ago had problems ever since, cannot bend knee to 70 rom , flexion is very bad walking with bent knee and using crutches, pain , though knee is not swollen or that hot, not sure if its arthrofibrosis , surgeon not gave an answer , any ideas
The warmth and the swelling will go down, and you will still have pain. It sounds like AF. I am pretty much bed bound now. Going on 6 years since my diagnosis…I have had all of the procedures you see on this forum, and then some. If I stay still, it does not hurt as much
WOW -Kathy you been through alot and mine is small considering what you been through, Myself I work just part time now and spend the rest of the day on the bed because of my knee hurting and cannot walk properly, I may need a revision, an MUA has not help even the surgeon doing the MUA stated he could not straighten the knee , I feel so tired and the whole thing has age me by ten years, walking with crutches has put alot of stress on my shoulders and arms’ has well has the other knee replacement, suffering from what I do believe is AF for nearly two years now and keep getting fob off by the medical profession , all think if you leave it , it will go away
Has anyone tried Kineret injections? The Kineret is supposed to inhibit scar tissue regrowth. Trying it now. It is an off label use of a rheumatoid arthritis medication. Protocol developed at Duke, Ibelieve.
Lol I survived the red train at 10:30 p.m.
Haha- don’t go there!
I got here at 11 p.m. poring rain. There are Angel’s here who saved me!
Saw Dr. Finn today. Sick. I have hope. He is the bomb. Six doctors came in with him and he is still humble.
He told me that he would care for me like a family member.
Has anyone used red light therapy for their arthrofibrosis? ASTYM? If so how did it go?
I use a infrared sauna bag every day just to sweat out toxins because I know longer am able to do cardio exercise.
There’s holistic things people can do to reduce inflammation, but once it’s AF- there’s no “quick-fix.”
I wish there was….
Interesting! I really miss doing cardio. Has the infrared heat had any affect at all on your arthrofibrosis? In what ways does it make you feel better? I’m concerned the heat will cause inflammation and loss of flexion.
No, but it helps your body get rid of toxins. Has no affect on ROM and does not increase inflammation.
I’m also getting ionic foot bathes twice a week.
I have EDS too, so my body doesn’t naturally detoxify like most people. I had so much mold in my system at one point, I thought I was going crazy.
Thankfully I found the Amen Clinic and they treated it.
I’m going to Chicago in two weeks and praying Dr. Finn accepts me for surgery. He replaces knee replacement and uses radiation.
Hi Jennifer, looking forward to hearing how your appointment went! Hope you got some good news.
Hi, has anyone had any experience with the COVID vaccine and their arthrofibrosis yet? I lost about 15 degrees of flexion in my knee after getting a flu shot this fall. I don’t think I did anything else unusual during this time that may have caused the loss of flexion/buildup of new scar tissue. Am concerned about getting the COVID vaccine and getting COVID itself. Please relate if you’ve had either and how it affected your arthrofibrosis. My flexion is currently just enough to walk and I can’t afford to lose any more. Thank you!
Curious to know if you had any feedback in regards to this..
Thanks!
Hi,
I did get both of my Covid shots and did not experience any loss in ROM. But, having seen your post, I made sure I increased the frequency of my exercises because I have worked too hard to regain the amount that I have (total knee done 12/19 with 2 MUAs afterwards). Good luck and I hope if you get them you don’t have any issues related to the vaccine.
Follow up: I got two Pfizer vaccines and I think they actually helped my knee. Maybe gained 5 degrees of flexion with no other changes in my activities or diet.
Facebook has an Arthrofibrosis page. There are some inspiring stories of recovery, if anyone is interested.
Thank you!! I need help, will look on FB–no insurance
Iam a home health RN who has had a initial total knee replacement following a horrific ski accident several years ago, in 2012 had severe infection which required 2 stage revision of right total knee, in 2015 had another infection more of in tibial area had incision and drainage surgury and then free flap over area, did recover and did well until qudaricep rupture in 2019 had repair but now i have severe arthrofibrosis of my total knee. did aggressive physical therapy for 5 months which failed down to 62 degees of flexion, my orthopedic surgeon relictant to do any thing to relieve the stiffness. Iam still actively trying to work in home health as a RN but need help to get scar tissue removed
I don’t know if this will help anyone.
I found a Chiropractor/ Holistic doctor who uses these patches (stickers) around my knee. He claims it’s as affective as FSM.
After 10 days with two patches I noticed that I could see the outline of the bottom half of my knee, but it didn’t bend anymore.
So when I stopped using them, my knee pain dramatically increased.
Yesterday I went back. Now I’m using 4 patches. My pain vanished and I have a 10 degree increase in bend.
It’s almost $400. for two weeks of patches, but it makes it possible for me to go back to work.
I don’t know if I can recover (gradually) or still have surgery in June, but maybe the surgery won’t be so extensive because of this.
What kind of patches are they, what are the ingredients or brand name?
The receipt says, Patches X. They are round, clear on outside and a white circle in the middle.
I tried to find them online, but no luck.
The Holistic doctor said they are like acupuncture, so made an acupuncturist would have them.
It would be nice to find a less expensive way way to get them.
Life wave (one word)
Ice wave for my knee. You can find them on eBay.
The 1st chiropractor “stamped” them so I couldn’t get them online-
Smart, he charged me $6.00 each!
Hasn’t done anything for my ROM- getting a “Finn” knee May 4th-
After reading many of the comments on this page, i will rely my story. I am now 67, had my knee replaced at 61, and have never had more than 25 percent movement in it since. Have visited and called 11 different doctors until i found one who actually told me the real truth, your probably going to actually live though this. He said that if i did find someone who could help to come back to him, that medical science isn’t advance enough to cure this. I was put on gapapentin for 6 years to control the pain until it started making me foggy, i was switch to a anti-depression called Duloxetine and most of the pain has disappeared. Since my surgery I still am very active, i still can play golf, with less distance, but until winter hit, i played 3/4 times a week. You have to learn to live with this disorder, there is no cure yet, maybe someday. I have even been calling lazer doctors to try to experiment on me and cut this fiber tissue out to no avail.
My mother (80 years) had a knee replacement operation 14 weeks ago and, at her last physio appointment, was told the stiffness and problems she has are due to arthrofibrosis. She is not able to bend it but worst than that, is on a lot of pain with the other knee now as it is clearly taking the weight to compensate for the other. She’s not sleeping and in a lot of pain a lot of the time. As the specialist as said there is nothing they can do, I’m really wanting to explore the alternative therapy route. Can anyone advise who I should be looking for in terms of specialism. We’re uk based. Thank you.
Hi Michelle
I live in SW England. Had TKR 18mths ago at aged 46 and left with only 70-75° flexion in my left knee. My local hispital where i had original replacement done have tried MUA’s and arthriscopic removal of scar tissue but they didnt work. Now been referred to see a Specialist in Exeter. Been waiting since July but been told likely to be waiting 12-18mths for Out Patients appt due to Covid. Good Luck with your mum.
I had a knee replacement in January of this year 2020. I went under and have had 5 MUA’s and Arthroscopic on my knee to get rid of the Scar tissue. To this day, I still cannot bend or straighten my knee correctly. I can’t stand for very long. No can I sit for very long. Sleeping is so difficult. I have been on pain pills since January. Soon I won’t be able to get them at the end of this year. It has been a long road. I don’t know what to do. I don’t think the Doctor knows what to do. I wish I could find some help.
Wendy I really feel for you–I know from experience that lack of good sleep just magnifies all the negatives. I have had 34 joint surgeries, 14 each knee and 2 and 4 shoulder. I am 54, when I was 18 found out I had a massive case of Osteochondritis Dissecans (similar to Avascular Necrosis) where the bone defect was 10 times the size of a normal OCD defect. I had several major surgeries between 18-33 to try and save the bone but due to large size of the defect all ultimately failed. At 33 I had a TKR in both 6 months apart–less than a year later the Arthrofibrosis hit me fast and hard. I had physical mobility but was and still is quite painful. I had 6 surgeries after the TKR on each to clean out the “clunk” but it turned into groundhog day, over and over. I was taking 1 step forward then 2 back so it was decided to continue that path was foolish.
I wanted to give you my background because this procedure may be an option for you: I met a Doctor who thought out of the box and his thinking was treating the AF cells that wildly reproduce like cancer cells. So I had 1 final arthroscopy to clean out the fibrotic material then 18 hours later that fresh bed was hit with radiation to try and kill off those cells–it made a lot of sense unfortunately I think because I had had so many surgeries and so much trauma that my body was already in hyperdrive however I would still recommend at least having that conversation because it may be an option for you.
I hope you find something that helps.
Sincerely,
Jeffrey
Jeffrey,
My 3rd surgeon also said the radiation was better than using tourniquets. Also, the aggressive physical therapy contributes to my AF. They try so hard to get those numbers, they are too aggressive and are creating the bleeding inside ….this more scar tissue
My husband has been through two TKR and two MUA. On the Right knee. He is in pain all the time. The second surgeon said the first surgeon used too small parts, misaligned the knee an left fragments in the knee. He promised he could take it out put parts in that fit and my husband pain would subside an he would have a 140 degree bend. My husband has less bend now than before. He 3 weeks ago underwent the 2nd MUA. The bend is now even less. When walking he says it feels as if his thigh muscle is being milked by the knee. Please help! Everyday he sinks lower into depression. We are going into our 8th month of pain an hobbling. Sleeping with ice packs and sore wrist from the walker. Please help!!!!
I had my arthrofibrosis/scar tissue removed by arthroscopic surgery in June 2020 at Steadman Clinic in Vail CO. It was better than before and had intense PT. Too aggressive PT with strengthening will injure the knee again and repeat the buildup of scar tissue. My doc at Steadman insisted in his PT orders to do only range of motion, stretching of the knee. NO strengthening. I was fine until December when the PT suggested a type of exercise to strengthen the quads. I should have called the doctor first. Now I’m back where I started with only 93 degrees flexion and 2 degrees extension. The doctor will not redo the removal of scar tissue since he says it will likely happen again. But, I KNOW that aggressive PT does this. I suggest Steadman clinic to remove scar tissue. They are great and will order non-aggressive PT. I was foolish not to have received the OK from my doc before the PT ruined my progress.
Hi. I would appreciate your input. I tried to get into the Steadman Clinic and they said the doctor I inquired about wouldn’t see me with TKR and stiffness. Did you have a TKR and then subsequent scar tissue/stiffness? If so which physician at the Steadman Clinic did you see? Thanks for any advice. Good luck to you.
I could not get into Steadman, but they said they do not treat TKR patients. They gave me a contact in Charleston.
I am convinced PT aggravated my k we. They were bending so hard I was in pain, and when they achieved a certain number, they were acting like it was such a great achievement . I complained several times. I switched facilities and discussed this with my doctor. He agreed, and this was new info to him. Most doctors do not know that if the patient has a immune deficiency , they are prime candidates for AF and treatment should not concentrate on that. No one knows what this condition is. When I first discovered I had AF, The Steadman Clinic were the only two places in the US treating us. Now everyone is jumping on, but they really do not k ow what to do. It just keeps growing back!
I had the same thing. Doctor promised he could fix the problem. Replaced the poly and sliced my IT band. Now my knee is worse. Another doctor said the poly he put in is too small and now my knee is worse. I am glad I found a name for the ailment. I am 58 and had my knee replaced at 43. The pain and lack of range of motion is depressing. Oh well, I still work out and am active but cant do cardio or even ride a bike.
You can workout because I can only bend 80 degrees and I workout. I also just found out that there are special adjustable pedals that can be put on a bicycle or on an ebike that can be adjusted to your bend range. Believe me, I just came from a doctor’s office today after telling me there’s no hope for fixing my knee, and I’m a dance instructor. I’ve been this way since my birthday when I received an implant in 2015. I have trouble getting in and out of a car or even getting up. I’ve needed my other knee to be done for the last 7 years, but not in a hurry to do anything, however, I don’t remember what it feels like to not have pain. My workouts are light and they are with music, so I actually enjoy them. I recently finished nearly year of cancer treatments, so I’m just glad I’m alive! Get a pedal! You’ll be glad you did.
I’m curious if anyone else has any of the following issues that I think may be related to my knee arthrofibrosis: food sensitivities that trigger inflammation (gluten and dairy), and allergic reaction to anti-inflammatories. I also take lysine occasionally to keep herpes cold sores at bay. It seems like this is a biological response and the more we can figure out if we have things in common we can hopefully figure out how to prevent the fibrosis and improve outcomes.
My flexion is not good enough for an orthopedal on a bike or an elliptical… thinking about trying a cross country ski machine (NordicTrac) – has anyone tried that and what was your experience?
I am 11 months out of TKR and my flexion has dropped from 95 to 67 since July despite being very careful not to aggravate my knee. :-(. When does the scar tissue stop developing?
I’m going to try FSM in a couple weeks, but my “search” led me to an alternative doctor who found my ileocecal valve was leeching and the root of my inflammation.
I’m off dairy, sugar, and anything hard like nuts, seeds, and raw vegetables.
He had a brochure about it that said to keep this diet for two weeks.
However the doctor felt dairy is the biggest culprit and I should avoid it permanently.
Let us know how it goes!
I am sorry, but never, i have had this for 46 years, my advise to you is to stay active and keep up retaining what you have, it continually is growing, and i continually breaking more of the scar tissue.
Roger,
I have not dealt with this as long as you but I too try to keep moving. Yes, my knee hurts and swells and is hot but I keep stretching and moving. I have worked too hard to get where I am to give up. But I have a question. Have you had any kind of interventions when you said you keep breaking scar tissue?
I have thought about trying to find someone who knows more about AF only to answer questions like will it happen when I have my left knee done. As long as I can continue with my current activity level I don’t want anyone going into my knee for anything. Thanks!
Hi Marie, I have arthrofibrosis of the left knee. I previously had ACL surgery, a first lysis of adhesions, and recently a second. I am gluten and dairy intolerant. I have cold extremities. I also have hypothyroidism and IBS problems. Somehow these are all related (through inflammation?) but I haven’t figured it out yet.
FSM could be worth a try for those suffering from scar tissue. I had Tkr in June 2019. Diagnosed with Arthofibrosis. I just completed my 2nd session of FSM. It hasn’t been a miracle cure but I am noticing some improvement. My flex went from 116 to 122 in two sessions. It helped extension a little bit. Extension is currently at 10. Not to much yet. I’m going to keep going for now. I’m hoping it keeps getting better. If you google Frequency specific micro current. There is a web site that explains it, and a Dr. locator. Good luck to all of you suffering from this.
Is that what a TENS machine does?
No! Tens is not a microcurrent. I’m not an expert by any means. I have researched it enough to know there completely different. I have a tens unit.
Hi Steve:
My ROM is 10-70.
I found someone who does FSM, but it’s a 90 minute drive.
Please let us know if you think that it helped and if it’s worth it for someone like me, with very little ROM.
Thank you.
Hi Jennifer, I was driving 140 miles for the treatment. Like I said it wasn’t a miracle cure for me, but it did make some improvements for me! My extension didn’t change much. My flex went from 116 to 126 in two treatments. There were some small improvements in pain also.
I wish I could tell you it would help you. I just don’t know enough about the treatment. I know what it did for my flex. I have to stop going for a little while due to time constraints in my job. I will be going back for more treatment in the spring!
Thanks. This website is wonky sometimes!
I’m going after the holidays.
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I had a hip re-surfacing in 2017 and ever since have periodic pain and stiffness in the joint making it tiring and an effort to walk. The severity of the pain comes and goes with episodes of almost pain free periods and then other times it gets worse. This may be triggered by stretching (I used to teach yoga). My surgeon says it’s scar tissue issues – which sound like arthrofibrosis. The cut for a re-surfacing is very deep and leaves a bigger than usual scar. I would like to hear from anyone who has similair experience and what they do to help. There are conflicting advice online from aggressive stretching / massage to very gentle approach including epsom baths and gentle stretch. Any advice really appreciated. Thanks
I have had 3 total knee replacements, two manipulations and a arthroscopy in May of 2020. I was told that I
I would eventually have to have another knee replacement. I asked if the doctor could not do another arthroscopiy if the scar tissue returned. He said no but then said if I could go for 5 years before any problems returned possibly he could but if it returned in months it would be another replacement. It’s been six months and I am beginning to have issues again. I am very frustrated.
I has a TKR in June on a severely compromised knee.
Resulting in Arthrofibrosis. The manipulation in August just made it (temporarily) worse.
I phoned Steadman Clinic for a referral (they don’t do TKR). The “specialist” told me to wait a full year before I try arthroscopic surgery.
I’m impatient, but since I flew to Denver from California, I’m taking the advice.
I take Serrapeptase every morning on an empty stomach. About 3 (120,000 SPU), but some people take 7.
I take Chan Shang from Hawaiian Pharmacy 3 times a day, and Cytokine Suppress with EGCG.
I’m off dairy, sugar, and gluten and drink a lot of bone broth.
I tried “patches” and was told that they are like FSM. My ROM didn’t increase, but now I can see the contour of the lower half of my knee.
My knee isn’t bending more, but it isn’t getting worse.
I’m try to get in with Dr. Singleton in Fort Worth. If he doesn’t accept me, I’m going to try Dr. Eakin in San Jose (I also have EDS.)
Going back to the surgeon who did the TKR would be last resort. He doesn’t do any of the new treatments and gave me permanent disability parking, so I don’t see him giving me much hope.
Interesting… thanks for letting us know what’s working for you! I’ve read that the flu can exacerbate arthrofibrosis problems and reduce flexion… I lost some flexion after I took the flu shot and have no other explanation. I noticed you’re taking something related to cytokines, and of course the coronavirus is related to cytokine storm. I’m really concerned now about either getting the virus or even taking the vaccine. Does anyone have any thoughts on this? Jennifer how did you decide to take the cytokine related supplement and how did you find out about it? Was it recommended by a doctor and if so what kind? I’m trying to figure out what kind of doctor other than a surgeon knows something about the biology of this.
Just personal research. It claims to modulate a healthy immune system response, and my immune response was on over-drive.
I was doing everything for anti-inflammation, but I got a diagnosis that my valve from small to large intestines was not working. So waste from my large intestine was leaking back into my stomach.
I had to go off hard food- raw vegetables, nuts, seeds, and dairy.
I have Ehlers-Danlos Syndrome, so valve laxity could be a symptom. My inflammation has been reduced.
I hope it helps me have a better outcome with the next surgery!
Just wanted to let everyone know of a private Facebook group called “ Arthrofibrosis Support”, will be great if we combine efforts and get more AF sufferers to join the fb group . The group members are very active and they share information on surgeons with experience in this horrible condition
Hi,
I have arthrofibrosis and I live in Boston, MA. I note that there aren’t any arthrofibrosis specialists in Boston. Does anyone know of a doctor in Boston who specializes in this condition?
Thank you.
Thank you for the informaion about the work being done to help anthrofibrosis.I am 4 months after a TKR and still have pain when sleeping and after exercising and stiffness to bend no real change.At this point and being 78 with other bone issues surgery was a poor option.Can write a paper and give good advice as to the right questions to ask before considering this surgery.
Doctors are transmission mechanics and really do not review other underlying problems before surgery.So disappointed no real time was ever taken to review upside and downside problems with this surgery.
Try Dr Thomas Gill…
Hi, did you find anyone in Boston? I could not, so ended up in Cincinnati with Dr Noyes. I’m thinking of having a final revision done ( arthroscopic) next year and would love to not have to go all the way to Cincinnati again (even though I think he is terrific). I’m thinking of switching to David Mayman at HSS in NYC, but even that is a pain in the neck from Boston.
I’ll reach out to T Gill again and report back. For reasons we now can’t remember, we had struck him from our list when we were researching surgeons for my first revision surgery. But looking at his bio, he looks like he could be a good fit. Thx.
In February 2020 I had a full one replacement. i live in Canada.
By now, November 2020, I have not had any significant improvement in pain, redness and some swelling of my knee, especially after physiotherapy treatments with stretching and bending, which have again and again just aggravated my knee, I have last month scoured the internet and have found some significant new research of Arthrofibrosis in Germany.
I have contacted Dr. med. Philip Traut, who has done a lot of research over the last 6 years in Arthrofibrosis, coming from his experience with patients who have suffered from Arthrofibrosis after knee replacements.
Facharzt für Orthopädie
Facharzt für Physikalische Therapie und Rehabilitation Praxis für orthopädische Beratung und Begutachtung Agaplesion ev. Klinikum Schaumburg
Klinik für Unfallchirurgie und Orthopädie
32545 Bad Oeynhausen, Germany
Mail: praxis@dr-traut.com ;Internet: http://www.dr-traut.com
I talked to Dr. Traut for over an hour on the phone and he has sent me his latest research articles as well as other relevant material.
It is interesting to see such new research and such a different treatment model for Arthrofibrosis, especially when there is no literature or research in Canada or the US yet.
Also interesting is the fact, that this research comes from Heart- Fibrosis research and is also being looked at in the latest research of lung respirators and intubation for Covid patients. ( Cytokine storms etc.) The other fascinating aspect is the connection to the bio-chemical, triggered by the Mind-body connection.
You will find several articles by Dr. Phillip Traut, especially his “Lexicon Contribution to the Orthopedic Surgery Professional Organization” ( BVOU) in Germany.
I have translated several articles into english. It gives a pretty concise summary of his new model of treatment for Arthrofibrosis.
Yy knee feels like it has an iron ring around it.
Dr. Traut calls it a “Schraubstockknie” , a “ vice-grip knee”.
That’s what my knee still feel like even now. If I had known then what I know now, my life would be quite different today.
The new Model of Treatment does not try to break up the scar tissue with heavy exercises, but will let the knee heal first through gentle exercises, QiGong, warm water Epson salt baths, Ayurvedic treatments, Pulsating electric Magnetic Field Therapy etc. Less is More!!
For me a full healing is probably no longer achievable, but if I can spare any other patient the pain and disability I have gone through the last 8 months, this research will be worth it.
there is also a long research article about these new finding by 3 Australian and Chinese researchers:
Pathological mechanisms and therapeutic outlooks for arthrofibrosis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6433953/
.So I really hope, that you will look further into this new research and be aware of the the implications of Arthrofibrosis and how it can affect about 10% of patients already in the early stages of recovery. With early detection it can be prevented.
My takeaway from the research is NOT to take ibuprofen. I have been on it since January.
Thank you for the information!
Thanks Maria for your comment. I live in Germany working for the Air Force. I have an appointment with Dr. Traut on 2 Feb for arthrofibrosis in both knees. Left TKR was done in March 2018 with severe scar buildup. My Air Force surgeon did one MUA and after the scarring returned in weeks, she recommended going to a joint center of excellence. I saw 4 German docs and all confirmed it was arthrofibrosis. I saw the one for about 4 months but was on heavy doses of OxyContin. The rationale is that the scarring is our bodies natural reaction fighting pain therefore you have to minimize/eliminate pain; thus the narcotics. The other three ortho surgeons wouldn’t touch my knee. They all said the chances were higher that after a revision it would be worse. I stumbled across Dr. Finn at Weiss Memorial Hospital in Chicago. After three flights from Germany to Chicago last year, I finally got a Finn Hinge knee replacement. Up until that time, my ROM was 45 degrees at best and I lived with constant pain. After the hinged knee was put in on 19 Sept, I went to 75 degrees when I was released. I had two additional MUAs over the next 2 months. I’m n 29 Oct last year, Dr Finn also replaced my right knee with a regular prosthetic. I had skin infection complication following the surgery which prevented any therapy until I flew back home to Germany in November last year. All in all, I was there for 2.5 months and in the hospital 4 times. Today, I have between 110-120 degrees ROM the n both knees. However, my knees are as big as cantaloupes. Both are stiff and there are nights that are tough to sleep from the pain. But, in saying that, I can walk endlessly and for the first time in years, I can pedal the exercise bike with full rotation for 30 minutes. I’m convinced the hinged knee freed up my left knee. Now, I’m hoping Dr. Traut can help me manage the scar tissue that is enveloping my knees and make life better. I’m not not 3 and 4 months out of surgery and I’m concerned the scarring will start reversing the ROM I’ve gained. I’ll let you know how my appointment goes and any advise provided. Stay healthy!
Four years ago (2016) I was diagnosed with a soft tissue sarcoma. I had surgery to remove both the tumour and the quad muscle which the tumour was sitting on. I then had a course of radiotherapy. All went well. Fast forward two years and I had a low impact fall which broke the top and bottom of my femur (same leg as tumour). I underwent a partial hip replacement and surgery to my knee. Plates and pins were inserted in my knee, hip and leg to replace the femur. I am just over 18 months from having that surgery. I have had extensive physiotherapy and hydrotherapy but still unable to bend my knee. I only have 55 degree flexion. My consultant has said further surgery could make matters worse for my leg given it’s complex nature and the fact I now have osteoporosis. I am wondering if I should get a second opinion to explore an MUA. I feel I have no quality of life.
My apologies for this upsetting explanation of my experiences with MUA.
I’ve had NUMEROUS ( 7+) surgeries to try to resolve the discomfort/severe pain & swelling post original TKR and then 2 revisions. NOTHING HELPED. Two very well known doctors, one locally in my area,(Bergen County NJ,) and one in Chicago. Both surgeons were not able to help my condition. The NJ doctor was UNABLE TO BUDGE MY KNEE. The Chicago doctor was so forceful, that he actually tore a muscle like part that supports the knee, ( I cannot remember the exact terminology), when he performed a MUA. This caused several episodes of major bleeding while participating in PT. Each occurrence of bleeding ceased my PT session for approximately 2weeks each time. Stopping PT obviously is not good, a total setback, and more scar tissue forms, which leads to less range of motion, more swelling, and pain. I’ve been dealing with this for 8 plus years now. That was my experience with the two MUA procedures that I went through. The procedures were performed by two different skilled, well known surgeons. Next week I am having a hip replaced. I’ve had horrific hip and radiating pain down my leg, groin, & buttocks for approximately 4 years. I thought it was Sciatica, but turns out to be “bone on bone”, tears in labrum, and arthritis. Hoping my bad knee will cooperate while rehabbing post hip surgery.
I’ve had rsd/crps since 2000. In August I fell depressing tibia under knee. And during fall my foot and ankle hit concrete with foot landing upside down. A few days later I got in to orthopedic, foot,and ankle dr. Knee was in brace.to await surgery. Foot and ankle in excruciating pain rsd. I know. Ball of foot,heel,top,of foot and ankle. Pain and swollen. Now it’s time today to begin 25% pressure on knee injury with walker. Throughout this whole ordeal I have been fighting to keep up with knee therapy as I fight swelling and redness after elevating with ice and elevating each nigh at sleep 1ft. Above heart. In a.m. foot almost looks normal. As soon as I lower it it begins to swell,turn red the longer the foot is down in sitting position. Today after first time on walker I was told to keep foot flat on floor as much as possible and do exercises for knee recovery. That was this a.m. its 3:34 I sat down foot too swollen ankle too. Elevated with ice. And see tiny red dots all up to mid thigh. Is there any hope for recovery. I have no pain but am on hydrocodone for knee. Do I have pitting edema.
I have been dealing with arthrofibrosis since 2017 after I fell and fractured my tibial plateau and damaged all ligaments. I’ve had two MUA ‘s and a knee replacement in 2018 and knee revision last October. I have been on Long term disability and was denied after the insurance company felt I could return to my current job even though my PT (doctorate) and Surgeon has repeatedly stated the issue of sitting for long periods of time / standing and walking are painful and difficult for me each day and if I was forced to go back to work I would suffer another inflammatory response and the cascading events would repeat again. I feel my surgeon was qualified however when the revision didn’t meet his expectations he has become very hands off. He hasn’t even physically evaluated my knee in several visits- except the last visit when I gave him no option- I asked him directly if would at least like to evaluate me knee. My knee has stayed extremely swollen and I have a large swollen protruding knot on the outside of my knee. I also have a vascular disease and cannot take NSAIDS due to renal hypertension. My therapist stated she has never seen a patient whose knee looks anything like mine after a year out from surgery. I have trouble sleeping, pain after I’ve been sitting and if I’ve been standing for any length of time as well. It’s a constant battle. I would love nothing more than to be able to take a long walk or run around the yard with my grandkids. I feel the orthopedic medical community does not have a clear path to healing for those of us who suffer with this daily. I return to my surgeon tomorrow and I’m already so anxious because I feel he just wants to be rid of me. Not sure where or who to turn to. I live in Southern Ohio.
Hello. I read your story. Try the Noyes Knee Institute in Cincinnati Ohio. I saw Dr. Noyes himself in 2014. Torn MCL, torn lateral meniscus with 30% removed with another surgeon prior. I developed arthrofibrosis according to Dr. Noyes. I had gone to him for a second opinion after 8 months of pain and knee wouldn’t straighten when I walked. He knew immediately what was wrong. They were the resident surgical group for the Cincinnati Bengals at one time. He or one of his team may be able to help you.
Thank you I will definitely get in touch with them!
I was diagnosed in January 2016 with osteonecrosis in my knee. I had a TKR which left me with no bend in my knee. July 2016 I had an MUA. which did not improve the bend. I kept returning to my surgeon who I am under the impression was fed up of me. He referred me to another surgeon, and after many conversations he agreed to do a revision but told me he could not guarantee it would work. I had the revision August 2018 and encountered lots of problems. I ended up with multiple pulmonary embolisms on my lungs, my wound leaked blood for two days so I had to have two units of blood and immobilise my knee with a splint which hindered my physiotherapy. My knee feels like it is in a vice which hampers my movement when I walk. I do exercises but just end up in more pain. I now have Orthrofibrosis and was told that there is nobody who knows enough about this to cure it. I am in more pain now than before my surgeries and wish I had never had surgery. This is so debilitating. I am unable to take anti-inflammatories. I welcome advice on how to relieve this pain.
I have had moderately severe arthrofibrosis in my left knee for a couple of years following 40 years of osteoarthritis in that knee. After I injured the knee in 1977 it locked up (typical for a torn meniscus) and I could not bend it or fully extend it at all for about 6 weeks. Without health insurance at that time all I could afford was Physical Therapy which did restore full function of the knee. However, the torn meniscus was not surgically repaired and I believe that the tear caused full thickness degeneration of the articular cartilage which was confirmed when I had a medial menisectomy in 1980 when I re-injured it water skiiing (kneeling on a so-called “boogey board”). I have had osteoarthritis ever since that surgery.
Anyway, with that history a couple of years ago the arthrofibrosis began and after only a couple of months the range of motion was very limited (flexion and extension were both very limited by the fibrotic “thickening” in the knee joint capsule). I went to PT and after a few months of hard work the ROM had improved to almost normal (full extension but flexion limited to 90 degrees) but the knee was very uncomfortable. I was very worried about it. Then, my 16 year old nephew had a complicated fracture that required surgery and his surgeon insisted that he use a “bone mending” device. Huh? I was mystified and wondered, what the heck is a “bone mending” device and can it mend cartilage? Could it help with my problem? So I researched it a lot and tried a particular PEMF device (Pulse Electro Magnetic Frequency device) that was a waste of $300 but I did return it for a full refund. My knee continued to deteriorate so I did more research and tried a different PEMF device for a bit over $500 (I think it is now something like $625). The first night I used it the fibrosis diminished significantly. As it turns out, for some people PEMF does significantly reduce inflammation. With continued use and physical therapy my knee functions at about 85% in my own estimation and that might turn out to be my new baseline. I have continued with the PEMF every night all night. It seems like I might have to continue long term as I skipped one night and the fibrotic “thickening” began to return immediately with some immediate (within 12 hours) loss of ROM.
That’s the short version. I’m not marketing anything so if anyone is interested then send me a reply and I can link you to some resources for PEMF but there are many charlatans out there. BTW, thus far the pemf does not seem to have helped the root cause of my osteoarthritis at all, which is to say, it does not seem to have regenerated any articular cartilage as some people (and some animal studies) claim it will. Who knows, maybe over the years it will but at this time all I can do is claim that it seems to have significantly reduced inflammation and therefore it has improved ROM and alleviated much of the discomfort. The pinpoint pain where the meniscus is located is still there like it has been for forty years. But the fibrosis inflammation was crippling so if this is the best I can do I will take it and be grateful.
Best wishes to all,
Robert
Hi-
Would a PEFM device help after a TKR? Manipulation didn’t work.
How does it work and where did you order it?
Thank You-
Jennifer
Hello Jennifer. Sorry for the delay, I kept checking for replies but it seems like everyone is so interested in surgical interventions that my information on PEMF fell on mostly dead ears. The ground breaking work on PEMF has been done by an electrical engineer named Dr. Robert Dennis. He is open to correspondence and he has some presentations on YouTube.
To answer your question, yes, it can be used after TKR.
Here is a link to a PEMF discussion group started by Dr. Dennis: https://forum.fluxhealth.co/t/clean-break-hip-and-clavicle-collarbone-both-with-internal-fixation-treating-with-pemf/1109
From that page you can link out to shop for devices. I recommend the M1 device as it is very portable and effective. I also stated using the more expensive C4 device once I ascertained that the PEMF treatment works for me. The C4 device has 4 coils (the M1 has 2) but it is bulkier so I use it an night with four coils around my knee.
One more thing—do not be fooled by all the high powered commercial PEMF devices. I believe Dr. Dennis is correct that it is not a matter of power but rather the wave form. Most high power devices use sinus rhythms that do not work in my experience.
Best of luck!
Robert
I have 15-20 degrees extension lag and flexion of 90 degree. I got in an accident 10 months ago. After 4 months of accident doctor suggested me to arthroscopic arthrolysis. In surgery I have got full extension and flexion but later i cant continue with it. I am currently doing regular therapy, i can gain my extension upto 8degrees while doing exercise but it goes back to the same 15-20 degrees after sometime. Its been 5 months of dealing with the same condition. I dont know what to do. Doctor suggested me to try physio for next three months. Is there anyone who can help me with this condition.
I am one of these people. How do I find out about people who trewt this and the foundation?
Amazon sells Trebinese and Serrasota v 360 for dissolving scar tissue. Two bottles, $200., a one month supply.
Anyone try it?
Hi,all you out thier,Iam 4 years in and out of hospital here in the UK,after mining accident,damaged my right knee,I needed knee replacement,now after4 operations on same knee,including scar tissue removal.the arthrofibrosis curse has it me to.i have full straight leg,60 degree be,pain not to bad but tightness is my main problem,I still exercise every single day,to keep further tightnes at bay,ihave a indoor ex bike,but only use one leg at a time,icant sit on the bike but I do rotate ,each leg,this helps,also u use a dressing. gown belt place under my foot with the belt held one side in each hand, like a loop,and sitting down I pull my leg up straight with the belt,and then bend it back onto the floor,I do this every day,s few mins at a time,helps with the stiffnes,I have now down to one tramadol a day(12pm)and maybe two paracetamol later in the day,I know I will never lose the tightnes,but iam atthe stage that I can drive,walk,even sit easy for meals,this is only possible due to the constant exercise,I hope I have helped you to keep on trying to do things that may help,I also use ibuprofen gel,gently rub into the knee,twice a day mornings,afternoons,it is hard but we have to live with this,until a cure comes along,as I think one will some day,take care.from David Jones,75 year old ex miner,south Yorkshire England.
I posted here previously, and just wanted to give an update. To recap, I had ACL surgery, had complications that led to both arthrofibrosis and CRPS, a neurodegenerative pain disorder with no cure. I had the ACL surgery itself in April 2020, could only achieve about 50° ROM after 4wks, so I had an MUA in June. My PT people were too agressive with me and contributed to me developing CRPS, and my ROM went from 50° to a brief 80° (post-MUA) and then fell to 15°, from severe pain. I could barely move my knee, weight bearing was painful, and no amount of pain meds helped me.
All this to say that I am finally at a good place: I spent all July gently rehabbing my leg by myself, my orthopedic doc referred me to a physiatrist, who said that due to the CRPS diagnosis, I was ineligible as a surgery candidate (barring any life-threatening conditions that necessitated treatment), and any surgery would cause the CRPS to potentially spread. I ended up working with a Pain Management doctor who helped me find solutions for pain, was referred to a better PT experienced with both CRPS and arthrofibrosis, and started a combination of spinal injections and nerve pain medication.
At the beginning of October, I achieved 100° ROM!!! From late-August to late-September, I improved 5-11° per week, and after hitting 100°, had slower improvement, but improvement nonetheless. As of today, I am now at 125° on my own, without surgery. My own rehab, my nerve pain meds, all combined with a competent PT enabled me to reach ROM and while progress has slowed down, I’m still making headway, able to walk with 90% normal gait. Don’t give up, guys.
Hi,
I’m having trouble finding a physiatrist.
What state are you in?
Is there anything I can be doing now? I called The Steadman Clinic and they referred me to a surgeon who specializes in post TKR.
The surgeon who did my TKR doesn’t specialize in Arthrofibrosis, plus he operates like a factory: 10 a day with 4 ORs going.
I’m taking Serrapeptase (7) every morning and ordered #10-Scar Adhesion a OD ordered.
I have the same issues as you except I had a TKR on a knee that was very damaged for 5 months.
Would you mind posting the name and location of the surgeon Steadman Clinic referred you to?
I had knee replacement surgery and knee manipulation and have aloof scarring. I bent the knee 99 after the manipulation but the nerve block cause lumps in my thigh and groin area that cause sever Swelling. I had the knee replacement in July. I don’t think I getting the proper treatment.
I need a surgeon who specializes in Arthrofibrosis after a TKR. I’m in Orange County, California.
I also have Ehlers-Danlos Syndrome.
Thank You.
My wife had an extremely severe case of HIT 2 (Heparin Induced Thrombocytopenia) after her knee replacement surgery when her platelets dropped almost 85%. The hospital didn’t recognize the drop until 10 days after the fact. Could the massive inflammation related to HIT2 contribute to the severity of her Arthrofibrosis? She had knee surgeries prior to the replacement but didn’t experience any arthrofibrosis.
In Aug 2018 I had ACLR which resulted in Sepis of right leg (bone, joint and blood infections). 2mths later diagnosed with Arthrofibrosis. Had 2 surgeries to remove scar tisse as well as manipulation under anesthesia with worse results.On 4th surgery surgeon was determined to scrape ALL scar tissue as it came back worse with considerable nerve & tissue damage. That final surgery resulted in a life long progressive chronic condition called CRPS. I have never regained use of right leg due to complications. Im non weight baring as deep bone & nerve pain prevents me from using it. I’ve tried lots of various techniques to relieve chronic pain and mobility.
I’ve tried to research all my complications together. Im contacting you for information or possibly information on long term treatment. I have severe atrophy & contractures in leg so ROM is nil. Its now been just over 2 yrs dealing with complications. Quality of life has been taken away.
Thanks for your help
Connie
I feel the same. No quality of life. I can’t walk far and have to use an aid. I am unable to drive and in pain from sitting and standing too long. It’s debilitating.
I have had a total knee replacement in February 2020 and now, after 7 months I am still in much pain and whenever I do exercises “through the pain level” it gets worse. I found a lot of answers in an Austrian and German forum about Arthrofibrose. http://www.arthroseforumaustria.at
Dr. Phillip Traut, Bad Oeynhausen, Germany, has a lot of advice, but unfortunately it is all in German. They are way advanced in their research: their main advice is: very gentle exercise; do NOT aggravate the built-up scar tissue. A lot of the problem comes from the chemical imbalances and signals the body gives to the trauma area of the operation, namely that the body thinks, it is traumatized again by the heavy exercises and builds up renewed scar tissue. A vicious cycle.
The motto: “work through the pain” is totally wrong. it will constantly aggravate the pain again and will not allow the scars tissue to heal.
This is the only article in english that I found: https://www.disabled-world.com/health/orthopedics/arthrofibrosis.php
I have read most of theses comments and can totally empathize with everyone. I was wondering where’s the list of surgeons who specialize in this surgery. I see the Steadman Clinic but who else? From my understanding you have to have a poor range of motion for them to consider surgery. If it’s just the pain and inability to walk pain free, you are referred to pain management. Does this sound right?
Pat
Hi Pat. I just had surgery with Dr. Hackett at the Steadman clinic. I have arthrofibrosis from an ACL reconstruction and then diagnostic knee scope 11 months later by another surgeon. Original ACL was March 2017. I had Full extension, even equal hyperextention to the other leg and nearly full flexion going into this surgery and yet I was MISERABLE from all the scar tissue, particularly in the anterior interval /fat pad and in the suprapatellar pouch. My ACL graft was also shot and not in the proper position so he took care of the scar tissue (he said there was a lot!) and reconstructed the ACL with a donor graft. I can not tell you how happy i have been with Dr. Hackett and his team and my experience here so far. I’m at risk for it returning, of course, but they have an extensive protocol to prevent that. According to a local PT here, Dr. Hackett is most like Dr. Steadman was in his approach to arthrofibrosis. POD1 redo-ACL and scar tissue surgery and I had over 100 degrees flexion, full extension and a quad that fires with no extension lag. My swelling peaked about 48 hours post op and I’m continuing to improve. POD3 today. Just wanted to say you definitely don’t need to have bad ROM for arthrofibrosis to be considered for surgical treatment. Dr. Singleton in Ft Worth Texas had also recommended surgery for me for the arthrofibrosis (not the ACL recon though). Best wishes to you.
Hi Sarah, if I could ask what made you choose Dr. Hackett over Dr. Singleton? I’m planning on seeing Dr. Singleton for my knee, it’s much like yours in that there’s pretty much full rom, but my knee always feels dense, heavy, and like it’s full of scarring – I know something’s wrong. I’m just curious because I heard Singleton is known for well known for treating arthrofibrosis. Just want to see the best surgeon I can. Thanks
-Derek
8-30-20
So folks. How come I don’t see any possitive remedies for this issue?
Can anyone really fix this issue?
Let’s here from you?
Call me if you have gotten over this horrible issue
732.666.1723
I had bilateral TKR in 2005. I have had four MUA and scar removal surgeries on one of my knees (the other did fine) I went through therapy each time, pretty aggressive usually, to no avail. I do not have chronic pain but I am very active and tend to fall a lot, tripping over anything and everything if I am not extremely careful. I have yet to hear anyone offer a success story of fixing this terrible condition. I realize this ranks way below finding a cure for cancer but it sure affects your lifestyle. I would love to hear from anyone who has beat this.
Yea me too. I sent all of my surgery records to the Hospital for Special Surgery, Complex Joint Reconstruction Center in NYC, to see if anyone there can help me.
They have a group of doctors that get together for special cases like ours (for a $500.00 non refundable fee)
My case was brought up last Monday, I’m waiting for an answer. I’ll keep everyone informed
Arthroscopic surgery and removing all of the fibrosis helped tremendously. Rehab was tough though, lost a lot of muscle and never played again(rugby) but at least I don’t have knee locks or kneecap dislocations anymore at random times. I’m sorry but I do not know any doctors in that area. It was a simple enough surgery, the biggest issue was the diagnostic, as I spent 8 years with it before they found it.I hope you get well.
dream all you want. dream hard. however when you are suffering with as much pain and anguish that is attached with scar tissue, dont get your hopes up. all that is offered is a band aid. when you os looks at you and shrug’s his shoulders you know deep down the doom that will be your fate.
Hi Mike
What country are you in? I have treatment to remove scar tissue in the UK. It is called FSM (frequency specific microcurrent). There is help out there for this horrible illness. Please email me.
Hi,
Can you share more information about this treatment please, has it been tested and tried before, is it offered in US?
Hi Renee,
Can you share more information about FSM, do you know if it is offered in the States and if so where should I look for it.
Hi Renee, I have someone who does this treatment as I’m in a good deal of pain. I have a decent range of motion so surgery doesn’t seem to be an option. What was your range of motion?
They said it works but my doctor never heard of it.
Any thoughts?
Google Frequency Specific Microcurrent practioners near me-
I have a lot of calls out and haven’t tried it, but I will let you know if I do.
My surgeon just issued me permanent disability parking decals- Ouch!
Hi Renee! Saw your post on the arthrofibrisis website. It was from 2018. I have had 5 surgeries on right knee. All within the last 2 1/2 yrs. The last one was this past January 2020. The scar tissue is awful! I live in the USA. ANY. Help is appreciated! Thank you, Susan Hang
Renee,
I am in the US. Would love to hear your story.
I have a doc visit Dec. 22 to discuss possible removal of the leg.
Anyone ever tired ultrasound treatments to break up scar tissue. If so,
how did it work and the contact info for the medical providers
I had an ultra sound machine that I wore. It was called SAM. However, It did not help. It is more for sports injuries.
Ultrasound is old school and shown to be ineffective.
Hi all.
I had ACLr surgery at the end of April 2020, and had an MUA in early June. Due to the bucket handle meniscus tear, I was unable to achieve much flexion prior to surgery. Post-op, I was at about 50-60° and remained stagnant. With the MUA, I reached 90° until three days later and I dropped all the way down to 20° with severe, debilitating pain and swelling that no amount of icing, elevating, or pain meds could help with.
PT was extremely aggressive with me, and I’m 100% convinced that it exacerbated my arthrofibrosis. I would spend the entire hour of each session literally sobbing from the pain, to the point of being unable to control my breathing (which is no easy feat, because my pain tolerance is extremely high). I’m not sure when the CRPS happened — if it was a slowly building thing or if it came after my MUA — but the pain is constant, small touches hurt, going too hard with PT leaves me in waves of pain that take an entire week to settle down, and icing makes it swell more (because of the CRPS).
I am now 10 weeks post-op from surgery, and my OS has taken me off of PT, so I am now doing everything from home, and will soon be seeing a pain specialist for the CRPS.
I can actively bend my knee to mayyybe 30-40° at most right now and extension hovers around 0°, with small improvements each week. Because I’ve gone so long without flexion over 100°, I’ve had a lot of hamstring tightness and pain when I DO bend, and the feeling sticks around when it’s straight.
For those of you who have had a rough time, I’d like to mention a few things which have helped me:
– ordering Chang Shan from hawaiipharm.com (I take a full dropper three times a day)
– alternating between baths with CBD (gotta have at least 200mg to help — I bought mine from kushqueen.com) and epsom salt
– before bending, massage behind the knee and alongside the outer part of the knee where your hamstrings are so that you loosen them up
– I have two towels that I use to help with bending. I fold one towel in half so that it forms a narrow rectangle, and roll it up so that it makes more of a cylindrical pillow. Let your knee rest on it for as long as you comfortably can and take breaks to stretch for extension. (If even this is uncomfortable, try it with a pillow under your foot to decrease the flexion angle and get the knee used to the bend.) I’ve found this to help with unblocking some initial stiffness, and after a while, you might feel more smoothness when you try to actively/passively bend. I sometimes sleep like this and when I wake up to use the bathroom, I stretch it out and then go back to sleep with the knee bent on the towel. After you get used to one towel roll, wrap another towel around it to create more width, and keep going! I’ve been able to achieve more from this than anything else (stationary bike is a hard no). Once my knee can bend to at least 50-60° again, I plan on prone hangs off a wedge pillow for support.
– as for extension difficulties, this is out of my ballpark, since it’s the one thing I’ve been able to retain, but my advice is to gently stretch as frequently as you can.
– if you have hip or lower back issues from not being able to walk properly for a long period of time, it helps to either stand (braced against a counter for support) or lay down on your good side, and do side leg raises. Do the raises 3-5 times a day in sets of ten, and if it’s tolerable, do side leg raises where you rotate the leg clockwise and counterclockwise.
I am doing my best to stay positive in spite of each diagnosis (I thought the arthrofibrosis was rough, but then the CRPS bowled me over completely), and it’s hard because I’m only in my late 20s and I’m usually very active. I am planning on 2-3x a week visits for some water therapy and crossing my fingers that this will help, too.
JJ,
I had surgery for arthrofibrosis of my right knee three weeks ago. I am 63 and developed arthrofibrosis after a knee replacement 14 months ago. I can say that the scar tissue goes nowhere. SO, I had the lysis and MUA to get rid of the scar tissue. I was at 7 extension and 91 flexion before surgery. Now at 1 and 122 flexion. But, it is still work and I agree that PT is really a thing that must be managed carefully. I had my arthrofibrosis treatment at The Steadman Clinic in Vail by Dr. Goden. My PT is 4 weeks of Range of Motion work only. SO, no strengthening. I’m still on a CPM machine 6 hrs a day and ice machine (NICE) for several hours a day and all night long.
PT is limited and it is really a fine line to cross. Steadman Clinic gives very specific PT protocol and it must be followed. I’d call them if you can to see if you can get in there. I know insurance issues can prevent this. I had to drive 10 hours to Vail, CO. This is one of only a handful of doctors who know how to deal with arthrofibrosis. MUA only will not get rid of it and may make it worse.
Please let me know if you have questions or anything.
You can email me
Hi JJ,
I wrote to the clinic two years ago, in Greenville, NC and they said they did not see patients with AF caused by TKR. Since they were the only doctors that have treated AF at the time. It was quite upsetting. I have been in a in for years. Thanks for posting this. I will contact them again.
Specialist are listed under Practitioners on the home page.
I didn’t notice this at first either.
Good Luck!
Searching this site it seems like my daughter may have arthofibrosis. She’s going on two years with swelling and pain in her knee. Does anyone recommend any doctors in the Toronto, Ontario Canada area?
Hi Donna, Have you found a Dr. in Canada? I’m searching for my mom…
TRKR 3/6/20. MUA 4/30/20. Deep tissue massage and hemp oil has seem to lessen the pain/pulling feeling of arthrofibrosis for me. Breast cancer survivors have stated it helps the scar tissue to soften. Anyone else use hemp oil?
Does anyone know if Arthrofibrosis qualifies for disability? I’m scared of becoming homeless because of my knee. It doesn’t bend and I have so much pain from trying to walk. How can I return to work when I can’t stand for more than a few minutes at a time? I’ve just been diagnosed even though I suspected this for several months. I’m on worker’s compensation at the moment but that won’t last long. I’m so worried about supporting myself now. I have no idea what to do.
Dr. David Mayman @ HSS in NYC is a wonderful, knowledgeable, compassionate doctor. He has (had) a trial study. Perhaps the study is still open. Unfortunately Dr. David Mayman was not able to help my knee (I’ve had eleven surgeries,3 Total Knee Replacements on the same knee.) Now, I’ve been told that doing more surgery might make my knee worse. It’s heartbreaking to know that I, who use to be very active in casual sports, and working out 3 – 4 times a week, will never be out of pain, will never be able to partake in sports that I use to enjoy. I went to Chicago hoping to be cured by Dr. Henry Finn. But that didn’t happen. Good Luck. If you meet with him you can tell him that I recommended him to you. Laurie L.
Yes, I am on SS disability
Yes it does. I have been on disability for just over a year as I can not do my job any longer. I recommend getting an attorney to help you get through faster. SSD pays their fee. I received mine in 6 months without a trial.
Yes.
Had a tibia fracture that resulted in bone not being straight. Dr. Told me TKR was my only option to correct that. Had left TKR May 2019. Although I do have ROM of 105…I still have a lot of symptoms that seem like arthrofibrosis. I am stiff 24 hrs a day and exercise does not help. The more I exercise the stiffer my knee gets. I cannot go down stairs normally. I am an active 65 yr old. My Dr is telling me there is nothing more he can do. I am having a hard time finding a Dr to give me a second opinion. I am not ready to give up! Does anyone know any Drs in the east who are familiar with the condition. I have tried all kinds of things besides PT…Astym Therapy, sports massage. I am in NEW YORK. Any suggestions would be appreciated!
I’m writing this at 4:30 am on a work night/morning bc I’m in pain and can’t sleep. I’ve been scrolling the internet for about an hour researching arthrofibrosis and anyone with a happy ending. I haven’t found any. I came across this website A few months ago and wasn’t hesitant to post because it’s a long paragraph of complaints. But I’m desperate and I’m hoping maybe someone knows something or can give me hope. May 7th 2019, I slipped and fell. I was stubborn and waited to go to the doctors until the pain was unbearable. That was June 3rd. Diagnosis was ACL tear and I was braced. I’m referred to a specialist. I see a PA at my local orthopedic clinic by mid July, I believe. Doesn’t even look at my knee and writes me a script for PT. I begin PT, following all that’s asked of me with zero improvement. I go back for my follow up at ortho. Begging for relief. I can’t bend, can’t straighten, my whole body is in pain from my inability to walk normal. (Meanwhile, I’m still work my active job) This time he orders an MRI. It takes weeks for insurance to approve it. When results come back, they tell me nothing is wrong. Although my knee is the size of a cantaloupe and hot to the touch. My orthopedic PA orders more PT. My PT tells me to remember that nothing is physically wrong with me, and everyone is making me feel like I’m making this up in my head. 3rd check up with PA. He finally decides that the swelling is abnormal. He numbs my knee and tries to remove the inflammation with a giant syringe. Nothing will suck out. It’s not just inflammation, it’s coagulated blood. Just stuck in my knee. He finally decides that’s he’s has no idea what’s going on and refers me to a doctor. I continue PT and finally get in to see a real doctor. The MRI, he said, was garbage and the worst imaging he’s ever seen (I was sent to a random imaging facility 2 hours from my house). He said instantly when seeing all the swelling in my mri that it’s arthrofibrosis. Arthro-what? And it’s so bad I need arthroscopic surgery. Denied by insurance, I fought to have it covered. They finally agreed, but held up the process for months. January 29th 2020 I had surgery, almost a year later. Turns out I also had a lateral meniscus tear. My knee was scraped, meniscus repaired and I had a manipulation. My other leg had developed problems, and my ankle on my non injured leg has become chronically swollen from over use. I have patella subluxation in my uninjured knee now. Following surgery, I went to PT 4 days after. Twice a week I go, do all my exercises as prescribed. Right now I can’t go because of corona. Although there has been improvement…I’m 5 degrees off from straight now! (Horay! Prior to surgery I was 20. No improvements on that since surgery tho), and I’ve managed to reach 120 degree flexion with a ton of pain and force. I’m in Constant pain. My back, my hips, my neck. I can’t walk normal. My legs swell. Is this forever? I was active before…rugby, competitive in CrossFit, obstacle course racing…now getting off the couch is a challenge. I can’t walk my dogs, my whole life is gone. Is this forever? Does it ever get any better than this? I was so excited for surgery and to get back to my old life, But it’s so far from normal. The closest I get to relief is when I load up on Advil all day and that’s not a sustainable solution, let alone not enough relief to be worth the long term side effects of that. It’s been 3 months since surgery. Is all this still normal? Help! I’m 31 and just need my active life back.
same here, a hospital PT tried his best to tear my leg off grabbing me by the ankle after my 91 degree chair bend and said, I think you have more in you than this and at a conturked angle pulled my leg to a 112, give or take 3 angle and beside the chair. I thought I would flip up out of the chair. Never had so much pain
I am having arthroscopic surgery to remove scar tissue/arthrofibrosis in my knee in a few weeks. Seeing Dr. Goden at The Steadman Clinic. He will give me Losartan which acts as an anti-fibrotic as well. Steadman Clinic has world class orthopedic surgeons. THey are in Vail and possibly elsewhere in the US
Candice, I was wondering if you had your revision yet, and if so how it went, particular with the help of Losartan?
Any thoughts would be appreciated.
Hi Beth
I too fell over and have a complete tear of ACL to right knee. Developed arthrofibrosis and had MUA to remove scar tissue which worked but obviously healing from the operation created more scar tissue. I am now having the scar tissue removed with FSM treatment. I am in the UK. Where are you? Email me and I can give you any information you need. Don’t give up.
Hi Renee, where in the IK are you? I am in Scotland and can’t find any information locally. Thanks.
Hello – I was diagnosed with AF last month after a ski accident in January. A skier ran over me and lacerated my quad tendon as well as the anterior portion of my knee. I underwent an emergency surgery that day and started aggressive PT after 2 weeks of being mostly immobilized. I thought “aggressive” PT was the only way to make progress in gaining ROM but after 2 weeks of pushing through the worst pain of my life, I knew something was wrong so I worked with my PT to adjust our approach and I’m so glad that I did. My extension is fine but flexion at 11 weeks post-op is only 52 degrees. Like others in this group I have felt moments of despair, fear, frustration, sadness, anger…but I am trying to remain hopeful.
Given Covid-19 I need to wait for an orthoscopic release and MUA, hoping that can be done in May.
Has anyone had success with this surgery? If so, any tips for PT after the surgery?
Is it common for AF to return AFTER this process?
For what it’s worth, some things I have tried and have seen a good response as far as pain management and increased ROM: acupuncture, joint active system brace I wear 3 times/day for 30 mins, cryotherapy (I bought an ice therapy machine on Amazon and love this thing), added Serrapeptase, Fish Oil, MSM and Turmeric to my daily supplements. My doctor said we could try cortisone shots but outside of that, he was not aware of any medications to treat the condition.
Thank you for any insight/opinions. I’m grateful for this community.
I had MUA 6 weeks ago. Had great flex for the first 2 days. After that a steady decline right back to where I started:(
Hello everyone,
My case may be a bit different from yours, however, the more I read the more I can’t help but feel like I may be suffering from arthrofibrosis.
On April of 2011 I had a received a full limb salvage surgery of my left femur due to stage 4 osteosarcoma at the age of 11. I received years of physical therapy that led me to about 90 degrees of flexion with assistance and 60-70 on my own. After 4-5 years of PT, I decided to end it and moved away for college. I noticed that with time I lost range. I was maybe at 50-60 degrees of flexion then, which was nothing but it was my normal. This was around 2014-2019.
During those years I was able to function and live a pretty good life, which including going to the gym. Yes, I had pain in my knee every so often- but it was SO much more manageable than now.
Long story short, I found out on Oct 2019 that I had fracture on my left femur (no one knows how exactly, but they say it was caused by the donor bone weakening due to time + the stress the screws I have drilled into it that hold it in place)
After a failed grafting procedure, I had no other choice but to receive a revision of femur fracture with a total knee replacement on 12/18/19. Pain wise, i had made improvements within the first month, but after month 2 the pain came back at full force. I could barely do any kind of PT exercises and my therapist even noticed i was regressing. The pain is completely worse than it ever has been. I have lost more mobility than I initially had (even with physical therapy- which i started again since my replacement- but have stopped since COVID-19).
Right now I feel at my wits end.
This does not feel like a “life” to me. I am desperate for a fix.
I am now 23years old and I can’t imagine having to live a life with this pain and stiffness. I can barely play with my 2-year old. I don’t even want to think about more kids…
lately i think about just holding out until she’s 18 and if the pain is still there, i’ll just call it.
nothing has helped me, not ice, not heating pads, menthol creams, CBD topic ointments, pain meds, tylenol, advil.
I am open to suggestions.
I am open to positive feedback.
has athrolysis worked for any of you?
It would be an absolute dream to have 90 degrees of flexion and milder pain.
I contacted my orthopedic surgeon about this procedure, hopefully i am a good candidate for it. I read that arhtolysis is most effective when performed 3-6 months after a TKA, is this true?
I will say reading all your comments made me feel less ALONE. I thank you all for sharing your stories.
Hi Amanda
Our journey sounds similar. Four years ago (2016) I was diagnosed with a soft tissue sarcoma. I had surgery to remove both the tumour and the quad muscle which the tumour was sitting on. I then had a course of radiotherapy. All went well. Fast forward two years and I had a low impact fall which broke the top and bottom of my femur (same leg as tumour). Consultant thought the radiotherapy had caused the femur to weaken. I underwent a partial hip replacement and surgery to my knee. Plates and pins were inserted in my knee, hip and leg to replace the femur. I am just over 18 months from having that surgery. I have had extensive physiotherapy and hydrotherapy but still unable to bend my knee. I only have 55 degree flexion. My consultant has said further surgery would pose a high risk of infection and could make matters worse for my leg given it’s complex nature and the fact I now have osteoporosis. I am wondering if I should get a second opinion to explore an MUA. Like you, I feel I have no quality of life. I used to run, dance and was a netball player. Now I need assistance to shower and dress. I am unable to drive or walk far so have no independence. I’m not giving up though. It’s tough and I do have some gloomy days but I love my life and have so many things I want to do. I am just looking at a future I need to adapt to. You will get through it.
I have had arthrofibrosis for 14 years, ever since my knee replacement in 2006. Despite every effort I made, including a partial revision which removed excessive amounts of scar tissue, it returned worse than ever and I have been suffering for all this time with no relief. All surgeons I have told me there is nothing that can be done. The stiffness is often unbearable and never ceases. Has anyone had any luck finding a knee wrap which may give some support?
I have also been told not to do any more surgery on this knee.
I am in your same boat. They suggested amputation several times. A Maryland specialist told me to get “Gummies” . I use the CBD oil, which I never believed in until they took my opioids away after 3 years because they did not want me to get addicted. Lol.
I find that by wearing my load bearing brace, it helps distribute the weight from my knee area to my lower leg.
It is not perfect, but it allows me to walk with my walker, and keeps the nerves from moving around so much
I am losing all hope. The Arthrofibrosis is back. I would like to know if anyone in this group has had success with arthrofibrosis? If so, what has worked? I am feeling desperate and hopeless, but mainly just tired of the pain. I had a TKR in 5/2018. MUA 8/2018. 4/2019 Conversion Knee Arthroplasty with a hinge. 12/2019 Replacement of the knee component of the Conversion prosthesis. I have had my knee aspirated more times than I can begin to remember (7 times from 1/2019). I have followed PT to the letter. I have taken Losartan to see if it would help(it did not). My ROM for extension has drastically improved from the last surgery. My flexion has gone from 115-65 in 6 weeks. My surgeon and rheumatologist decided to attack the arthrofibrosis as an auto-immune disease. I was supposed to start Methotrexate and Colchicine, but with the current state of the world, the rheumatologist has suggested I wait on immune suppressants. I am beginning to feel the best solution might be to remove the leg from the knee down. Honestly, I am looking for hope.
Hi! My story is a few comments down but I’ve had arthrofibrosis for 2 years. I started methotrexate 8 weeks ago but have yet to have surgery (won’t until this pandemic is over). Nice to hear someone else is on this course. I’ll certainly share my results.
I had TKR May 2019 and developed arthrofibrosis after about the sixth week due to a lupus flare.
Since I live in rural WY the surgeon was inot knowledgeable about this. I went to Denver for consult.
I am at 100 flexion and not full extension. So my gait is off and hip pain, knee and ankle pain are bad.
I may go to Mayo Clinic. I believe you can check out the x10therapy.com website for info on a machine that is getting good reviews. Maybe you can get your doctor to check it out.
I live in Florida and I have a phone consultation this morning about th x10. Fingers crossed this is something that will work.
I have had AF for 6 years now. I have had the x10, set up in my home for over 6 months, it helps with flexion, – and +, but not AF. I have also had the SAM Unit ( Ultra Sound) Ortho Pods ( MIcrowave unit) opioids for 3 years, Custom fitted Load bearing braces.
I have had 8 procedures, serveral MUI’s , Blocks, and short of getting a Spinal Stimulator, which is useless at this point, my Flex is -60/-10.
I have been to specialists at Johns Hopkins, Sanai Hospital both is Baltimore ( Dr Delanois is the best< and MUSC in Charleston (don”t waste your time)
CBD oil and brace work so I can walk to the mail box, but other than that, they did recommend amputation, but you still have pain with that. So keeping comfortable is key. It does not go away, therapy makes it worse because every time they try to get their numbers, they create bleeding which makes more scar tissue. My nerves have been damaged by therapy and surgeries. There is no cure. They told me to stay comfortable…”get the gummies, they are best” was my latest recommendation from a specialist and “watch the birds in your yard and enjoy the rest” from my pain mgmt doctor. really??? I am too young for this life..
I’m in the same boat as you but at least your. Doc is trying something mine is not. I to have been wanting amputation above knee my quality of life sucks leg is stuck at 68 flexcion and 5 on extension if I don’t keep my straight leg brace on my fibrosis gets so bad I can’t walk and I have to use wheelchair they also won’t give pain meds so I drink my self to sleep I guess it’s ok to be an alcoholic. I’m sorry your in this same sinking boat I hope you get better care then I
Cheryl
You and I pretty much have the same story, except for when we had our surgery. A few weeks ago, I felt like amputation might be the best option too, because I was at wit’s end just like you. I regrouped and realize that keeping the leg is most important. I have been using Icy Hot menthol patches that normally are used for your back. I use them on my knee, and they give me a lot of relief. I also soak my leg in Dr. Teal’s Pink Himalayan salt or Epsom salt. I am sending positive energy your way. If I learn of any other things we can do, I will share that with you when I can. Until then, I wish you hope, patience, and strength to deal with the pain.
Hello, I am so sorry to hear about your horrible experiences. I have had arthrofibrosis for over 3 years now. I may have missed this in your earlier comments, but have you gotten an MRI done recently?
Does anyone know of a hand/wrist specialist who had experience with arthrofibrosis? I’ve had multiple ‘clean ups’ to remove scar tissue, only have have it come back thicker and more painfully than before.
I’ve been taking a supplement by “Doctors Best” called “Serrepatase” I have scar tissue on the medial side of my knee from a ACL/Meniscus surgery it’s helped a lot to get rid of most of my scar tissue
I take 7 a day on a empty stomach and wait about a hour before I eat , so I take it super early in the morning
https://www.amazon.com/Doctors-Best-Potency-Serrapeptase-Supports/dp/B003QW3GCI/ref=mp_s_a_1_3?keywords=serrapeptase+120000+doctors+best&qid=1583655208&sprefix=serr&sr=8-3
Royce,
Dr Norman Weinzweig one of the recommended surgeons on this site, specializes in hands and wrists.
I had a total knee replacement 27th Feb 2018
After physio and realising my knee kept swelling and stiffening up my surgery said I might have arthrofibrosis, I’ve had no examinations or tests to prove or disprove this diagnosis
I’ve had two MUA’s and a steroid over the first 18 months, my surgeon then suggested replacing the 10mm liner with an 8mm liner, I have become sceptical as to he’s suggestions
Am I right to doubt him, or should I let him keep trying things?
I’m in a similar predicament. My surgery was in 2015 and had 2 MUA’s still doing poorly. Recently saw a surgeon that suggested doing a low dose of radiation shortly before surgery to keep the scar tissue from forming in the area. I’ve researched that idea and it’s been successful for those that have had it done. I haven’t scheduled anything yet as he wants me too do a blood test and bone scan to make sure I don’t have an infection or any loose parts. So to answer your question, talk to your surgeon about this procedure and if you’re ever in doubt get a second opinion. Hope everything works out for you!
I too have read slot and a Dr Finn in Chicago does the radiation low dose and read lots of good things have happened good luck. Please let us know how things turn out for you
Cheryl
This is absolutely correct!!! I was told the same thing should I decide to have a fourth revision, which I will not. But this will stop the bleeding the tourniquet causes. Also, PT techs need to stop pushing the knee to get better numbers, they are creating the inflammation, but they are not taught to do this. Inform your doctor to make sure they do not over end the knee. They are not breaking the tissue, but creating more.
Hi all.
I’ve been struggling with arthrofibrosis since a horrific kneecap dislocation in March 2018. The following is a list of my surgeries/procedures. My patellar tendon actually adhered to my tibia and snapped during a MUA. After this reconstruction, my ROM increased to 50°-60° but gradually stiffened again. I don’t believe the genicular nerve treatments or any other pain management treatments have helped.
Patellar dislocation 3/2018
MPFL surgery 4/2018
MUA 5/2018
Genicular nerve surgery 11/2018
MUA + arthroscopy 2/2019
Cortisone injection 4/2019
MUA 5/2019
Patellar tendinitis reconstruction 5/2019
I’m currently seeing a rheumatologist and taking methotrexate for suspected, but not formally diagnosed, psoriatic arthritis. The thought here is that suppressing my immune system will discourage scar build up after another open release of the patella.
Any thoughts or recommendations? I’m at my wit’s end. Thanks in advance!
3 years ago my brother and I was sparring in jiu jitsu and my brother felt a sharp pain and the next day he had a lump behind his knee. He went to the doctor who then told him it was just a bakers cyst and to just work through it with a physio and it will sort itself out. After two weeks it dispersed and with pain my brothers knee swelled up and was unable to bend or straighten his knee. This meant he had to quit work until he could see a specialist. 3 months later he was told by the specialist that it was a bleed in the knee and it had caused scar tissue. 3 years later two surgeries in and no difference in his knee, he says he doesn’t get pain anymore but he still can’t bend his knee and his muscles have started to shrink on his legs. He followed all the exercises post op as he is addicted to training and for the second op he was in a full leg splint to keep it straight but it just bent back again. He has been offered another surgery but he is disheartened by the whole process and he has three kids which he always wanted to teach jiu jitsu to. I think he has given up on his knee now he is only just now turn 40
there must be other procedures that can fix this problem right????
Frequency Specific Microcurrent works. I am having this treatment and it is working wonders. Not well known in UK but lots of practitioners in USA. Good luck
I’m just learning about FSM from this website. I’ve been disappointed in my treatment since my ACL/meniscus recon last year. I’ve had two scar tissue MUAs/scopes including lateral capsular release. I can barely walk, with extremely limited range. Do you think FSM is effective enough to address my scar tissue filled knee? I don’t understand why it’s not publicized more if it’s so effective.
Hey guys, I have had arthrofibrosis since April 2019 following a fall resulting in complete tear of ACL and meniscus tear. After many months of painful and not successful physio therapy (both private and NHS in UK). My knee was at -40 on extention before I had an arthroscopy operation. Post op it is now at -10. I can recommend the following treatments. 1. Tuina (Chinese massage which stimulates blood circulation in body. On my 1st session of this I noticed a difference to my leg. 2. Frequency Specific Microcurrent (FSM) Treatment has been a LIFE CHANGER. I have just had my 3rd session out of 7 that I have booked. FSM works by stimulating ATP (energy) to cells that breaks down scar tissue. I can actually feel the tissue turning to mush. I am self-funding both of these treatments which are expensive but I believe you can get them if you have private health insurance. I am based in London, UK. If you want further information about clinics I use or any other info please email me at rld8 at hotmail dot com. xx
Hi Rachel,
I am struggling with artho fibrosis and saw your comment on the website.
I am wondering if your Frequency Specific Microcurrent therapy has helped you achieve ROM. Thanks
I am 14 weeks post op TKR of my left knee. I had six weeks physical therapy where I progressed to 103% flexion. I was doing really well. My surgeon released me from PT and told me I could just go to my local gym and do the recumbent bike and swimming, which I did. Then, at 10 weeks out, I started experiencing severe pain and stiffness in my knee, after standing for 2 hours one day. Ever since then, I have been in chronic pain going on 3 weeks now. I went back to my surgeon’s office and they claim it’s scar tissue. After doing research on Arthofibrosis, I’m convinced this is what I have. Should my next step be an MRI?
Post op TKR two years.Arthrobibrosis set in early after surgery.I Have started the CHANG SHAN with amazing results.It has taken the stiffness away close to 75% so far immediately after taking.I have been on it for a week now.I take one full dropper full three times per day.I have done nothing else for it so far.Thank you so much Denn.
I am a 53 year old Male diagnosed at age 18 with a bone disease in both legs called Osteochondritis Dissecans, or bone death in Latin. I had 3 major surgeries starting within 1 week of diagnosis which helped save 2 large pieces of damaged bone in both joints. Several years later I had multiple arthroscopic procedures to remove pieces of bone and cartilage. After several other major procedures to try and save the joint that failed I had both knees replaced at age 33. Unfortunately I developed Arthrofibrosis post TKA in both legs on top of the underlying bone disease which is extremely painful. Over the next decade I had 10 arthroscopic procedures, 5 on each to remove debris and “clunk” that developed super aggressively. About 5 years ago I had the same procedure followed by radiation 24 hours post surgery to try and kill the cell bed causing the out of control tissue development but it failed as well with pain returning immediately. I just found out I have to have major reconstructive surgery on my right TKA caused by the Arthrofibrosis building tissue around and under my kneecap which will be surgery 27 plus 6 on my shoulders with similar out of control tissue problems.
During most of this time I have been a chronic pain patient due to the severe bone pain which had been treated with large doses of narcotic pain medication (Oxycodone, Oxycontin, Fentanyl lozenges) which not only only worked but I also took as directed and am alive today but I am in severe debilitating pain because of the limiting of pain medication due to the “opioid crisis”. I don’t understanding how the limitation of my needed medication for a diagnosed medical condition requiring 27 surgeries helps people overdosing mainly from heroin and fentanyl with a few from prescription opiates mostly obtained illegally on the street. Through my research I have still yet to find anyone in a legitimate chronic pain program that has died from taking their pain meds AS DIRECTED. I have wondered if people on the streets start getting “high” on insulin if diabetics will either be refused insulin or get very small amounts that does not treat the condition. If it sounds like I am angry about this situation I am because the illegal activities of others have drastically impacted my quality of life. I know I am not the only patient facing this situation. As I have gotten older with a problem getting worse causing more pain my medication has gone waaaaay down, the opposite direction. In a second opinion I got some feedback which was “have you tried Advil with PT”– all I could say was “Seriously?”
I would like to talk to other people in a similar situation and ask how they are treating the underlying Arthrofibrosis and the pain caused by it. Through my research it seemed like the best interventional procedure was the clean out followed by radiation, I haven’t really come across anything else. I am not in a position where I can just live with this type of pain–it is destroying my life, I just want some relief……
Had multiple surgeries on right ankle 3 months ago.
With almost immediate and comprehensive exercise, massage, therapy i am already running 3km couple times a week, can stand on one leg, do squats, ride a bike, swim etc. Recovey is going well.
I have performed thorough massage daily (often in an epsom salt bath) to increase lymphatic and vascular flow, reduce lesions and scars. As a therapist, I am hoping to see better results.
The arthrofibrosis is limiting my range of motion, contributing to mild supination and pain at end of range.
In my research, I have stumbled upon the use of ultrasound to break adhesions, scarring and actually strenghten other structures.
Does anyone have any experience or information about ultrasound therapy to reduce arthrofibrosis?
Thank you.
Aloha everyone – I am back again to say that the halofuginone (Chang Shan) is continuing to work miracles but not just on the arthrofibrosis of my knee but soft tissue everywhere – rotator cuff and hands and feet where I previously had tendonitis as well. This is the first time in years and years that I do not wake up stiff and in pain. As with all TCM (traditional Chinese medicine) continued use is recommended. I also swim in the ocean and do stationary bicycle. It looks like if you tend to build up scar tissue you should avoid MUA, removal of scar tissue, TKA revision, or aggressive PT and never push through the pain as all of these things just trigger a strong immune response. While the risk of falling and the restriction of ADL’s make you a high risk for fracture and many activities experts I have consulted (orthopedic surgeons, PT’s and RMT’s) and other patients who have had a TKA agree – time, patience, and gentle ROM may be the only option to prevent and reduce the damage.
Thank you for posting about something that actually WORKS for you. I’m going to give it a try and report back.
I started using the Chang Shan after reading your post, use it three times daily. Now, after almost ten days of use. I am not feeling any changes in ROM or changes in stiffness of the scar tissue around my knee. I am hoping others who started using it start sharing their experiences as well so we have more data on efficacy of this natural solution.
Would like more info on halofuginone: is this an herbal pill you take ?
If so what dosage and can you recommend a place to order it from ?
I had a TKR in February 2018 and have a stretchy tight sensation that has never gone away. I had a MUA following the surgery but it didn’t really improve anything Would appreciate any info you can give me on this.
Hi Denn,
In what form are you using chang shan, a cream, oil, tincture or just what? I’ve been fighting arthrofibrosis for years, including surgeries to remove it but it grows back with great enthusiasm. Don’t even know yet if I can find it in Canada but really would like a bit more info on how you use it and in what form. Thanks in advance if you can answer this question to you. I’ve had on knee replacement with two revisions. After each surgery I was told to fight thru the pain as really strenuous rehab was the answer. It only succeeds in building more and more scar tissue, in fact. A recent study has suggested that though this has been the approach, it is now recognized that only gentle movement that doesn’t tear up the tissue is definitely best. I ride a stationary bike daily and might be seeing a small improvement but very interested in your experience with this chang shan. Any help would be appreciated.
Bob
I saw the post on Chang Shan and am researching it as well. You can get it on Amazon. You may want to look up halofuginone as chang shan is derived from this. Apparently this inhibits an enzyme that in turn inflames tissue. Also, I understand that it can induce nausea so you may want to go lightly at first. I am still in the process of reviewing it but I intend to try it out. Let me know if it works for you
Had knee ORIF surgery back in 2016 when I was 33 after I shattered my kneecap (communited displaced fracture). Only have half my kneecap now held together with pins & wire. Bc of the arthrofibrosis I’ve only got 80° flexion and even getting to that level of flexion took months of PT & using a Dynasplint. In the process of getting a 2nd surgery scheduled to clean out some of the scar tissue & do a light MUA. I’ll never get past 100° flexion even with surgery though bc my patellar tendon is shortened & too scarred down and could snap if pushed further.
I really wish both my original surgeon & I had been informed about this issue bc I’d had scar tissue issues with dental surgeries too, but never knew it could be connected nor was asked about it. I’m grateful for sites like this bc it helps patients like me be more proactive about our care & surgery protocol.
What is the treatment for this disease?
Looks like Halofuginone really does work – also started taking naproxen again. Every BODY is different but I have tried everything external and internal and after months and months nothing else has reduced the pain or increased the flexion. Does have side effects though – fatigue and headache.
What dosage of Halofuginone do you use, and where is it available?
Hello Debbie:
I bought this on eBay – only $20 for 4 oz. – it is called Chang Shan (AKA Dichroa Febrifuga) – the company is based out of Honolulu, HI. and is organic, no GMO’s. I am taking it 3 times a day in water. I have been using TCM for over 40 years but I could not find this in any of my Chinese pharmaceutical texts, however, I could NOT believe the difference after just 3 days. As I do not take any other medications or drugs of any kind (no opioids, marijuana, prescription meds) or do anything different than any other day I thought it had to be too good to be true – I would recommend a try as PT and surgery is not recommended. Swimming in the ocean, gentle Tai Chi (if you can even bend that much) and a stationary bicycle seems to be the best. Let me know how it works for you. I did find it makes you drowsy and I also got a headache but the side effects seem to be dissipating. Good Luck!
Like all of you I naturally build up scar tissue and it happened early on for a TKA back in March 2019. One week post-op I developed severe muscle cramps lasting 2-3 hours – in four different muscle groups. Not ONE doctor was able to diagnose “lactic acidosis” and blamed it on dehydration, medication, or electrolyte deficiency. As I take 800 mg. of magnesium every day not likely. I blamed it on a combination of hypoperfusion from the surgery and blocks and then aggressive PT. I had to tell them to give me Ringer’s Lactate and within 5 minutes all was resolved. No matter what I did I never was able to achieve good flexion even with aggressive PT, swimming, bicycle, etc. Then I fell and basically did my own MUA (manipulation under anesthetic WITHOUT anesthetic) – fortunately no bones were broken but again, aggressive PT only made things worse. I finally saw the top orthopedic surgeon available hoping he could remove the scar tissue but he said it had a very poor success rate. He did recommend bicycle so I am doing that, swimming in the ocean, Epsom salts, massage over the knee, and using oral halofuginone (Chang Shan) the latter supposedly could help with dissolution of collagen in well-established arthrofibrosis. Hopefully, time, patience and NO aggressive PT seems to be the only option as a revision is way too risky for people with osteoarthritis and osteoporosis. Great to be able to share the frustration and pain we suffer with others – my greatest fear is tripping and falling as I cannot lift my foot properly. BTW, aggressive PT is definitely a culprit after surgery – if I ever have the other knee done I will just jump into the ocean and do my stationary bicycle.
I agree I did aggressive with one and not the other and both had the same outcome some people just have huge scar response after surgeries and I’m one of them and have been suffering since my knees we both done in 2017 my life has FOREVER changed for the worst
Want to talk to another fibro in both knees post TKR gal? Write me at dhbryant13 at Gmail dot com for my phone number.
Yolanda : hi l had a knee replacement back in 2017 and was told to follow up with physical therapy l did all my follow up with physical therapy and nothing has work my knee became painful and stiff l was asked by my othorpedic to come in and have a MUA done but l was in total fear to get it done so l remain with this stiff knee up to 2 years in 2019 Oct 10 l had a knee revision l had extensive aggressive physical therapy no improvement lm still here March 8 with a stiff knee and pain is their any thing else l can do my doctor said he can not do any more for me this is my second total knee surgery he said l can loose my leg and even get an infection if l go for a third knee surgery.Any suggestions of what and how l can get over this disabling pain?
Had a TKR 1/30/19. MUA 3/5/19. Revision 6/5/19 was supposed to be to replace prosthetic but found arthofibrosis. Cleaned out then. Very aggressive PT 3 times a week starting 5 days after surgery. Slept in flexion splint at night and extension splint at least 5-6 hours daily. Arthofibrosis has returned. Seeing specialist in Dallas for second opinion to replace prosthetic with hinged type mechanism to reduce/eliminate arthofibrosis. Constant pain in knee and hip. Need other knee done but may just live with that pain instead of another TKR.
Hi Drenda. I have a similar story. RTKR 2018 / MUA 11/18 / Revision 2019 to replace the poly component with a slimmer piece (this improved extension) / Arthroscopy to remove adhesions 2019. All of this and flexion max is 86. I had 110 pre op. I have not heard of an alternative device that could limit AR. If you are still monitoring or posting on this site please let me know what you have found.
Robin, after seeing specialist in Dallas, he ordered a three phase bone scan. Went over it with him last week. He found the prosthesis is loose on both sides in several places. He is replacing the prosthesis. He isn’t convinced there ever was arthofibrosis. Said he would be able to tell me more after surgery. He is booked so far in advance that I am having to wait four weeks for the surgery (2/6). Can update you after surgery.
I would like be to know the outcome of your 2/6/20 procedure! I had TKR in 2012 with tightness of scarring and pain. In 2016 had a Total Knee Revision due to knee becoming unstable because of problem with the replacement becoming loose. After that surgery, developed severe Arthrofibrosis and my flexion is at 11 degree and bend is less than 90 degrees, and bending continues to be reduced. Knee is extremely painful, my leg has now become a serious disability.
Looking for some options out there to give me a knee with improved mobility.
THANKS!
Post TKA one year. This is my second tka on the same knee in 11 months. Very aggressive arthrofibrosis formed very quickly. Did manipulation twice, months if therapy, surgeon says nothing else he can do. Rom about 70 and a great deal of pain.
Very frustrated. Surgeon attitude is I’ll have to live with it..
Ray
19 F with limited ROM for three years. Out of options. Did all the surgeries, manipulation, therapy, etc. yet scar tissue reforms. Unsure what to do next.
Hey Hannah check out https://injuredathletestoolbox.com/aboutarthrofibrosis/
I also have been diagnosed with Arthrofibrosis. 6 months out from TKR. I found a physical therapist who administers the Graston technique. (you can research that)It has helped me with pain management quite a bit. Its good on all kinds of aches and pains. He did it on my sore back that came from overcompensating for my lack of extention. It has worked pretty well. I recommend trying it.
Also having searched the web everywhere for answers, I came across an article about a case where they did a revision using Low dose radiation to shut down the build up of scar tissue. It worked for that person. It was out of Chicago. I don’t know why they cant use that during a Arthroscopic surgery. I told my Dr. about it and said he could use me for a trial run. He just said if I need a revision he could help me find someone who does that. Anyway good luck to you all!!
Does anyone have details of an arthrofibrosis specialist in England, ideally North East?
I had a TKR in February I could tell immediately something was weird. I’m a pain slayer but this was different. I did PT and yet my knee kept locking up. PT was extend, water aerobics, more PT I would allow them to bend my knee and scream bloody murder trying to break it free. Had a manipulation, was exercising before I left the host determined to not allow it to tighten. More PT Dr checked for infection, MRI, trying to figure why my knee has only 90* flexion, and looks like it’s made of cottage cheese!!!! He has no clue told me he’d look at it again in February next year.
I live in Alabama Are there any doctors in the state or surrounding that deal with arthrofibrosis as I read about it I believe this is absolutely my problem. I’ve gone from a extremely active person to one who trips in grass because my hair is so impaired
Hi, Elizabeth,
My experience with Arthro Fib has not been a good one. I’ve had a TKR with two revisions now. But, from the first surgery I learned I had arthro. I had the scar tissue cut out after the first surgery by arthroscopy surgery but, of course, it grows back with unlimited enthusiasm. I live in a relatively small town in British Columbia (pop = appx. 12,000) but has numerous physio outlets. Not one of these physios had a clue about the condition but informed me at the beginning of treatment they knew how to deal with scar tissue. They did not, however, know how to deal with this rare and debilitating form of excessive scar being laid down. I am one year since my second revision and have included things like very deep tissue massage and am going to try pilates, why not,I’ll try anything. I’m sorry I’m not giving you any good news. I know how painful this condition surely is for you and how much it restricts ROM. If any of my many attempts to help this condition actually work, I will email you again. Bet of luck and keep on moving that joint, otherwise the consequences are indeed dire. If you have either a stationary bike or a real bike, ride them. Do not need a lot of tension on a stationary as the idea is just to keep bending the joint. I do this on a regular basis and it, at least, keeps me at about 90 degrees ROM.
I have arthrofibrosis after a tkr. My orthopedic surgeon just referred me to a pain management doctor. What should I expect?
i had a total knee d ios,replacement at only 43 years old.I have arthrofibrosis and complex regional pain syndrome. I had a closed manipulation 6 months post op and my surgeon didn’t ever see me again.my pain is 24/7! i have 90 degrees rom. i cant do stairs its awful on my lower back and hips.i am barely able walk having crps and arthrofibrosis any ideas to help me?
Hi. First of all I am sorry we are all suffering!
I had a TKR September 29, 2019. I had a MUA on November 4, 2019. One week and still using a CPM approximately 8 hours a day. I can feel my knee stiffening up again. Did anyone have a very aggressive PT routine seeing a therapist 5x a week for two weeks after a MUA?
Has anyone had any success with cryotherapy?
I live near Cleveland, Ohio.
Phyllis
Hi – I had very aggressive PT in Chicago – Dr. Finn — no success, and even though I asked him (Finn) to do the MUA sooner, he refused. Later he performed a MUA, and was so determined to get my knee to bend that tore a muscle deep within the knee area. I kept bleeding when I exercised so I had to stop PT for bit….VERY DISAPPOINTING a supposed 2 week stay lasted 2.5 months away from home, which I would have been fine with if all was successful…but not. I have pain 24/7…warm to touch, hugely swollen. Cannot walk down stairs properly no running at all, disabled for life.
I tried so many different pain reduction therapies, including cryotherapy. It did not help me at all. My main concern is when I m older…what will be??? Take care.
I had a TKR on my left knee in September 2018 resulting in arthrofibrosis and bend of only 90 degrees. I then had an MUA 8 weeks after surgery which, after much PT, resulted in the same bend of 90 degrees.
I now have pain in my right knee due to arthritis and want to know what the risk of the same outcome
following a second TKR.
How do I find a surgeon who specializes in avoidance of arthrofibrosis in the second knee?
What if my surgeon doesn’t know anything about it? Where can he inquire more info?
Seeing ads and news reports on CBD. Does anyone have any input on whether or not this can help with the pain of AF?
I recently was given 3 samples of 500 mg cbd cream. I used it several times over 2 days. I found no relief. Scar 5issue continues to tighten and restrict movement. I also slowly dissolved cbd gummies (am and pm), also with no result. I wish I could report better results. Read an article that all most no cbd is absorbed across intestinal wall.
Hello, I had left tkr on May 17, 2019. It’s my 5 month anniversary of surgery. From the beginning I could tell I was not like others in my PT group. I had a mua at 6 weeks. Within 2 days I could tell nothing much had changed, but the doctor assured me I had 100 degrees of flexion at the mua. My current status is never more than 60 degrees and the scar tissue tightens horribly with activity. I’ve had 2 opinions and all suggest waiting for 12-18 months for arthroscopy surgery. I’m 66 and was very active before surgery. My life has been ruined by Arthrofibrosis. I would not mind the loss of function, but the pain is excruciating. I am hoping that someone in your organization can help me. I live in south east Pennsylvania. Thank you so much.
I found out I have a nickel allergy would the nickel allergy make my arthofibros has worse
Maybe you need to discuss with your doctor options to us porcelain artificial knee vs. the new titanium/nickel knee to minimize potential for arthrofibrosis and other allergy related complications
Gluten-Free diet can help minimize scar tissues.
I had TKR back in December 2016, followed by severe arthrofibrosis condition which lasted through one MUA and three other surgeries to remove extensive scar tissues, only for the tissues to come back just weeks following all surgeries. I now feel the best I felt for years mainly due to the article provided by Mary in July :
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6433953/
It is a long article, summary is you need to control and reduce inflammation which triggers growth of the scar tissues. I started gluten-free diet, low sugar diet and to my surprise the scar tissues are not as thick and painful anymore. for the first time in almost three years I can move without pain or with very little pain. I strongly recommend for everyone who is suffering from this debilitating arthrofibrosis condition, to try controlling body inflammation though diet and focusing in anti-inflammation foods (banana, peppers, probiotics, Omega 3-6, generally use gluten-free products which can now be found in most grocery stores) replacing bread, bagels with gluten-free alternative can make big difference to minimize scar tissues, as well as for your general health.
I wanted to share my experience, hoping that I can help others going through the pain and anguish I have gone through for 3 years.
Thanks for posting this. I had a TKR Feb 27 this year. I required a MUA on April 10. Currently, I only have about 90 degrees flexion, but thank goodness, I have 0 extension. I don’t walk with a limp, but I have issues with other things. I now will have arthroscopic lysis of adhesions on Oct 28. Keloids run in my family and I was looking for any pointers. I’m going to try this diet, maybe even starting pre-op.
Hi Shayla,
Just came across your post from October saying you were about to have arthrolysis surgery and wondered if that’s been done and what the success was. Hopefully you come back to this site and find this reply. I’m considering asking for it but thinking it will come back no matter the effort put into rehab.
Bob Munson
Muscles all over your body need love and attention to improve full body function and motion. Our beautiful Myofascial Tools case holds 4 of our sleek myofascial release instruments that are designed to treat fascia dysfunction.
My husband had tkr in 2007 and they redid it in 2008 because of the pain & stiffness. He had several MUAs but still only has 70% and lots of pain.Finally diagnosed with arthrofibrosis. He recently had a bad reaction to Cipro which tore his rotator cuff, messed up tendons, etc. He can’t lift his arms. They don’t know how to treat this and I’m beginning to wonder if he could have arthrofibrosis set in his shoulders. He is in extreme pain. Just wondering if you’re a candidate for it the first time if it would appear in the shoulder.
Sherri, arthrofibrosis in the shoulder is “frozen shoulder.” I had it following rotator cuff surgery even though I did all the pt at home and at the clinic that was ordered. All the research I found pretty much stated it could last 2 years. I couldn’t lift my arm all that time but eventually my shoulder returned to normal without doing any special therapy or surgery. I now have a frozen knee following a replacement even though I followed all instructions for home exercises and clinic visits
I’m researching this for my dad. He had a knee replacement 2.5 years ago, followed all orders and PT and was in severe pain with swelling constantly (also did manipulation). Another surgeon talked him into another replacement 2 months ago and was hoping for better results. Lots of scar tissue removed during surgery, but he’s no better now than before (did another manipulation 3 weeks ago). He’s gone from an active, healthy, busy 74 yr old, to a depressed, near handicapped man. He has a super high pain tolerance in general, but he is miserable now. He’s in Chattanooga and I’m in Atlanta. Are there any specialists in the metro Atlanta area to recommend?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6433953/
This is the best source of information available that will hopefully help you to understand this condition.
I had RTKR back in August of 2017 and I haven’t been the same since then. I did my PT and no matter what we couldn’t push past 75 so thats when we did my first MUA and my OS felt very positive because he got my bend to at least 90 so I was hopeful but I didn’t keep the ROM. I went with some more PT for another couple of weeks and then he did another MUA. Im now about a year into this new knee and Im miserable. Both of these MUA’s did nothing so I was directed to a pain management clinic and they wanted to try a genicular nerve block on the knee so I could push through and guess what, it didn’t work either. I went back to my OS in March and we said I wasn’t at the 2 year mark yet so just give it more time. Well i was taken to the ER back in May because my other leg was in excruciating pain and was told I have a bakers cyst behind the left knee and to go see my OS. Im obviously putting more on my left leg to compensate for the right. He told me i have arthrofibrosis and theres not much he could do . I practically begged him to do one more surgery on my right knee to cut out the scar tissue and start the healing all over. He agreed and on June 26, 2019 he went in and found something that he wasn’t expecting. He said the tendon that he cut for my initial surgery was blocking my scar tissue from breaking up.He said he removed the tendon but I feel that Im not getting any better. The pain is excruciating and my left knee is killing me. Im so afraid of ending up in a wheel chair. Im in Michigan and if anyone knows of any specialist in arthrofibrosis, please let me know.
Try to find any cryotherapy clinics. Not surgical and is not guaranteed to help 100% but it helps with arthrofibrosis and it will relieve inflammation. Also try to find a sports massage place so they can scrape your knee. This will break up scar tissue.
Hi Alex. Did cryotherapy work for you?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6433953/
Very informative site that shows that the medical profession really doesn’t understand this condition.
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Hello group,
My story is similar to many of yours and I am looking for an arthrofibrosis “specialist” in the Boston area (there should be many here, but no one “advertises” that specialty and good luck finding…)
I am 52 and had TKR on March 5. Within a month it was clear that I had egregious arthrofibrosis and had MUA on May 20 which did help a bit. He said he removed more scar tissue than ever w other patients so I don’t know if that indicates how bad my reaction is? I have new scar tissue at the arthroscopic sites.
I can’t break past a 75 degree bend (w constant work) and pain is constant. I won’t go into how awful this is – you all know!
My surgeon who is renowned for this work (I went to him cause other PT patients where I go have the “best outcomes” from him) but he seems to have little interest in the small % of patients like me, who don’t have great outcomes. He just keeps saying that I have a “low threshold of pain” – as if 1. that matters and 2. that’s a reason to dismiss me.
At first he was very confident that – no matter what – we would get to full ROM, but now he’s kind of throwing his hands up and saying that with another MUA we might get to 90 degrees and ‘that should be good’. Would that be good for him??? He initially said a revision might be the solution and now he’s even questioning that. Is that because the scar tissue cycle will just return after a revision?
Do any of you have that experience – should that be a concern?
I’m scouring pubmed and other sites to look at how scar tissue can be limited – no luck yet. I thought of seeing a rheumatologist, but no one is available for months and surgeon says that’s a waste of time. I have lost ability to work (concentrate) and my life is sh*t, as you all know. Any help pointing me to research (I will look at Nature.com) or more importantly – SPECIALISTS in the Boston area (or NY? I will travel!!!) would be greatly appreciated.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6433953/
Please read the information on this newly released study.
Sorry to hear this. I could have written this myself. Mid-50’s, two TKR’s, surgeon says i have a low pain threshold and wants nothing to do with me. ROM about 85-90 degrees. Live in Boston area and can’t find anyone to take this on. Miserable!
I had. 4 surgeries on knee 1 replacement. Broke femur in manipulation..set femur surger 3 partial replacement. Then. A 2nd tkr only can bend 70+ degrees and losing bend…
Hello,
I am a physical therapist and I have seen several cases of arthrofibrotic knees after TKR. Everything you all have described in these forum posts is the classic clinical picture of arthrofibrosis. I would just like to offer a suggestion of a direction to look/research for possible help. The one thing I have seen that helps arthrofibrotic knees in the post-op (still healing, not long-term down-the-road) period is something that falls under the generic term of instrument-assisted soft tissue mobilization (IASTM). There are many “brands” of it out there. The most well-known is Graston, but I will caution you up front to be wary of Graston as it is “can be” what I would call “aggressive”. I say “can be” because it depends on the practitioner delivering the treatment. Some of them tend towards aggressive treatment and you absolutely don’t want that with AF. However, some are most judicious in their approach and have an understanding of the nature of AF. I am attaching a link to an article of a case study of treatment of an AF knee after a patellar tendon rupture repair by one of these judicious Graston practitioners. The results are pretty impressive. Another “brand” of IASTM is AYSTM. AYSTM does not have a reputation as an aggressive treatment. There are other “brands” out there, but all of them utilize the same general premise of using a tool to break up scar tissue and adhesions. Practitioners of Graston & AYSTM must go to training seminars and pass a clinical proficiency test to become a certified practitioner. It is VERY expensive to get AYSTM certification. Graston is much less expensive. There are many more Graston practitioners out there. But again, beware, many of them cater to a younger athletic population and can tend to be aggressive, so if you find one, be sure to ask a lot of questions about their technique and about their experience with AF. You can google AYSTM and find their website and down at the bottom is a link for finding certified practitioners. You can do the same for Graston. The last “brand” I want to tell you about is more of what I would call a homemade brand. It is not well-known. It is a physical therapist out in CA who specializes in treating scar tissue and he calls his “brand” ASTR. He has a YouTube channel with hundreds of treatments of actual patients with various diagnoses and you can get an idea of what IASTM is and how it is done. His name is Joseph Jacobs and you can do a search for him on YouTube. One treatment I found impressive is called “5 months of frozen shoulder”. The ROM gained with one treatment is impressive to me. All this said, I am not a certified IASTM practitioner. I have a colleague treating a patient with an arthrofibrotic knee and was looking for the article I have attached below to send her when I discovered this blog and decided to just post this information in the hope that it may be helpful to some of you.
Blessings,
Lisa Milstead
Thank you Lisa, I will research this. Kieron
Thanks lisa I am. Going to research the methods you mention.my last ortho does not want to. Open it up again..I can’t give up….
Thanks Lisa – I don’t see the link to the article – not sure if I can list my email here (will try) if you can send directly. Thank you! bbatshalom (at) gmail.com
Lisa I didn’t see the article you said you would have in your post
Did you ever get the link for the article
I don’t see the link to the article. Can you send it
In July 2017, I fell “up” some stairs, jamming my forearm into the stair rise. I had excruciating pain in my right shoulder and it was difficult to lift my arm for a week. Then, lying on the bed, I could not lift my arm at all. MRI showed the rotator cuff completely torn off. Surgery seemed to go fine with a reattachment. But, my scapula was winging out severely. I was religious with my PT and the therapist even taped it down. It didn’t hold it down, popped right back up. The orthopedist said it was due to arthrofibrosis. In addition, my range of motion with my shoulder was low. So 5 months later I undergo surgery for breaking up the scar tissue. I was told that my shoulder would be yanked every which way to release the tension. In the process of this type procedure, which is very aggressive, the surgeon shredded my bicep! (My bicep was fine during the first surgery of my shoulder). So I awoke finding out that he had done a bicep tendonesis, cutting and tacking my bicep on the shoulder.
My range of motion in my shoulder is better but behind my back is low, stuck. I have a quirky motion when I use my right hand to point and my teres major is extremely taunt. In certain positions when I sleep, my ring finger goes to sleep. AND, the scapula is worse! It will not flattened. I have tried deep tissue massage, cupping, exercises and chiropractic help. My bicep is tight and feels like plastic.
My frustrations include all of the aching pain and the orthopedist saying there is no scapula surgery that has been found to correct the winging. Possibly, in the arthrofibrosis release surgery, did tendons get twisted out of position causing the scapula to wing, the teres to tighten and some nerve damage??? Has anyone else experienced this? Thanks for reading-
Hi everyone,
My story is the same as others, mine dates back to 2016 & “life changing” is an understatement. I am in Australia. I have read every study and any info available & asked many questions as well & now being on my third surgeon. I have a couple of questions that do not seem to be able to be answered even though I think they are simple. 1. Has anyone gone from minimal flexion to 100 degrees after treatment & what was that treatment.
2. The “handful” of surgeons specialising in Arthrofibrosis, what are the specialising in? As all I find is studies & reports but no conclusion, this makes “me” a specialist in this field. I am so frustrated as everyone else is on here & my heart aches reading your stories even though I am in the same position. Wishing you all a good day.
You should go to the website nature.com and type in Arthrofibrosis. An extensive new study with several hundred references was published in January 2019 and released on the web in March 2019. I’ve had numerous surgeries and have progressively gotten worse. It appears that they’re doing studies on this condition but don’t really have a treatment or cure. The specialist out there aren’t really specialists as they want to do more surgeries, which often makes the problem worse. Good luck! I posted this information in May in an article I placed on this site. I feel like I could now be a specialist about this condition/disease.
Thanks Marilyn, I have read these studies as per your earlier recommendation. I agree with you regarding the surgeries, I ask lots of questions now & real answers are limited. Kieron
Hi Kieron. I know this is way out there since it is November 2019. But I had no where to go to answer my questions and consider myself an expert(my ortho actually said I know more than he does!!). I had a simple MCL sprain but think I developed scar tissue that froze it in about a 2-5 degree from extension in Dec. 2018. Had decent ROM until I tried PT for it and started losing ROM along with major pain. AN MRI confirmed nothing but healed MCL. I was diagnosed with ARthrofibrosis and frozen knee. My frozen knee was at 8-85 degrees. So I left it alone and rested iced and did not much and in June it started to thaw and I am now at 2-127+ ROM. I think that I still have scarring that hurts when I try to stretch into 0 degree extension or try to get back hyper-extension or even try to exercise. But too much of that puts me back in such pain and swelling I am limping again. I am afraid the scar is still active even though my phase of frozen is thawing…The pt and surgeon think I should be back to normal soon. I am not convinced. I am seeking out someone in January, new insurance. Although I have very good ROM,I still have lots of pain. I expect a surgeon would only work on me if I have less ROM, which is why I was dismissed from his practice. I need to find someone too. Have you had any luck?
Hi everyone
I had a tkr back in February 2017 and I was never right after it. I Never recovered properly and was left with a very stiff knee – my rom would have been 15 to 75 on a good day. My surgeon performed 2 MUA’s over the following months before agreeing that the knee needed to be redone. I had a revision surgery in February 2018 by a different surgeon and whilst it’s a little bit better it’s still a long way from right. My rom now is about 10 to 85 unassisted. Life is very hard, walking is extremely difficult and whilst I try to be positive most of the time there are days when it’s very depressing. I was only 52 having the first surgery so quite young really. My physio is great but within one day of treatment the whole thing stiffens up again. I’m living in Ireland and I’m wondering if anyone on here knows (and would recommend) a surgeon here who treats arthrofibrosis.
Hi Everyone- I am new to this condition after a lateral bucket handle meniscus repair. I am in SO much pain and PT has made some progress but not very much. I have limited range of motion- less than 90 degrees. Im so swollen and spend my life in pain meds of the couch with ice. Just doing basic activities exhausts me and leaves me in so much pain. I am getting worried about work as I’ve been off since February. I can’t afford to continue this way. Just wondering how you manage to work through the pain and/or what did you do to continue your life. This has been such a difficult process and I’m really getting worried that I am going to stay this way. Thank you ahead of time!
Cameron Arthur says:
June 1, 2017 at 1:10 am
Tricia
I couldn’t have said it better myself. After six surgeries in six months four of which have been huge open procedures, I’m left with huge amounts of pain due to the arthrofibrosis and a very minimal range of motion even after the most recent surgery included a major cutting into my quad muscles to gain A little extra movement. I believe my surgeon is a great surgeon or I wouldn’t have allowed him to do all of the surgeries but I know there are many people out there that question how hard we have worked and how much pain we are in and have no idea and no right to question that if they haven’t experienced this condition firsthand. I have had shoulder surgeries in the past and part of my lung removed which required cutting through all of my ribs etc. and I consider myself to have a pretty good pain tolerance so therefore when I say this is off the charts at times, I absolutely mean it and expect my surgeon and other professionals etc. to understand and believe me. When you feel like that doesn’t occur at times, that Just adds insult to injury and it’s so difficult to even take one day at a time with this condition when you are only 48 years old, great condition, have always stayed in shape and did everything and anything they asked for the surgeries including hundreds and hundreds of hours of physical therapy, done exercises on a regular basis, CPM machine etc. I spent two weeks out of the last month in the hospital and several weeks altogether but have never ever refused to do anything they’ve asked or required and quite the opposite have worked my butt off to get better and will continue to do so but it’s so difficult just to keep from being depressed etc. in addition to having this horrible disease and incredible pain. I can’t even get clear-cut answers out of my doctor as to what the future holds or next step is except I really believe I need a much better degree of pain management as it’s almost intolerable at times even with the medication they provide. I just don’t believe that the nurses or maybe even the surgeon themselves realize how painful arthrofibrosis and all of these things are since they say I’m the most difficult patient they’ve ever had and don’t deal with Arthur fibrosis very often. I even hear these things from physical therapy etc. from physical therapist that I’ve been doing the job 25 years that don’t even know what this disease is all about. Some of them have never even heard of that yet they believe that you should be able to push your knee past thos I even hear these things from physical therapy etc. from physical therapist that I’ve been doing the job 25 years that don’t even know what this disease is all about. Some of them have never even heard of that yet they believe that you should be able to do all of the exercises and improved range of motion greatly. It’s almost incredible to me to think that those people wouldn’t know anything about this horrible condition. I think they are so used to normal surgeries that they can’t wrap their brain around the fact that this could be so painful. I limp when I walk now, I compensate with my other knee that is starting to bother me, my lower back hurts as well, and I think it’s only going to get worse. It scares the crap out of me to think that my right knee may need work or that my back is going to be affected etc. You mentioned missing work and I have missed the last month and probably a few months out of the last six months. I’m very fortunate to have a job that I’m in the office the majority of the time so that I can do my work from home by email etc. but that won’t last forever obviously. I also feel like my surgeon is probably ready to ditch me at a certain time as I’ve already seen the attitude in the office surrounding him and the people that really make the decisions about writing pain medication etc. changing gradually. Even though I’ve spent tens of thousands of dollars on these surgeries and do everything that’s asked, it just feels as though I am becoming that problem patient that they could do without and that is the worst feeling in the world as most of you know the deal with this condition. I believe first and foremost in order to keep from being totally depressed and keep some optimistic thoughts, you have to have a surgeon and their team that are totally on your side and believing you do you have incredible amounts of pain and if they aren’t the ones that can assist you in reducing that pain, then they need to send you some place that specializes in it for pain management. I can’t seem to get that through to them and I’m scared to death that I will just be cast away eventually here once there are no more surgeries on the horizon. I don’t know how to describe it but I know most of the readers on here will understand that first and foremost we want our surgeons and other doctors and nurses to absolutely believe us when we say we are in pain that is the most unbelievable unbearable that we have ever experienced in our lives and need their support and assistance probably more than we even need medications. This is the biggest challenge of my life for sure. We all know it’s a living hell. I apologize for the long rant as well but the last thing we need is for others to question our dedication and commitment to working for just a little less pain, better motion, and a little relief from this hell.
I’ve read so many stories on here of people in such incredible pain like I am and I just want to say that I wish you all the best and hope that your pain and situations get better with time. I really really pray to God that there are more advancements in this area in the future to help not only us but others that will experience the same nightmare. Others have always said and I agree, that I am one of the most optimistic positive people yet I struggle daily to maintain any optimism that this will get better yet I know I have to keep working hard to try to get another degree of motion and heal. I can’t imagine living in this kind of pain forever and you have to struggle to keep your mind from going to some very dark places. I’m sure anyone that has this condition can relate to exactly what I’m saying. Once again I apologize for the length of this but felt like it was somewhat therapeutic to even respond because you’re post was exactly what I was thinking today and just felt like I needed to agree with you.
I’m going to continue on one day at a time and try to improve the situation but at times I really wonder how it will all turn out or how I’m going to manage the pain and all that goes with it for the rest of my life. It’s so difficult to even go day today, hour to hour, minute to minute so it’s very difficult to understand how that will all work out but I pray to God it does as this is just the worst nightmare of my life as it is for many on here.
I wish you all the best as I do everyone else and hope your pain gets better and injury improves. God bless and I appreciate your post as I do everyone else’s!
Reply
mike stanton says:
June 8, 2017 at 10:31 am
Cameron no one and I mean no one besides the souls that have to deal with this can grasp the diverse dimensions we visit. from pain to depression to the nightmare that it is. you have captured everything that is wrong and then the deer in the head lights stare we receive when we try to explain it. I am off the meds so that I can concentrate at work and of course I am functioning at a level of pain that is incredible. No boo hoo’s I just gotta make it thru life I am 57, kid in college, retirement? After two years the mind game that plays out just to manage the day…wow you get it. This brings no comfort but you are not alone. .
Reply
C.Arthur says:
September 4, 2017 at 6:32 pm
Mike
First, thank you because when I wrote that I WAS SO UPSET, hurting, frustrated, scared, mad, and every other adjective to describe this horrible nightmare that ONLY you guys would and will understand ( so basically what I’m feeling right now as well LOL ) and that I still feel today BUT am trying to manage a little better than I did that night I wrote my original post!!! Hahha.
If it weren’t so painful and crazy it’s almost not beleiveable and since I’ve always been such positive person, I can almost even make it laughable since my post was borderline CRAZY that night and I even thought “oh my gosh I shouldn’t have written this and how do I get it deleted?!” Haha. So thanks for at least understanding my and OUR frustration as it’s like therapy and we all know dealing with this disease and situations it’s managing the depression, darkness, and all of the really horrible times even more than it is trying to figure out the mechanical dysfunction of the knee! I’m just so glad I have an outlet to express it where my “friends” understand it. I’m so thankful for this site and all of you!! I have learned so much from others and continue to hope!
I did want to update and share with others the fact that I haven’t really lost any more motion and I’m so excited that I am actually going to see Dr. LaPrade at Steadman Hawkins clinic in Vail Colorado In two weeks and I think he’s one of the best surgeons in the country for this particular disease. I feel very fortunate that I was able to get in to see him. I am knowledgeable enough about this disease now that I don’t believe he can probably do anything to help the situation but at least I will have some closure and maybe a plan to keep the other knee, my hips, lower back etc. and good enough shape to avoid any procedures with them. As we all know, the knee starts to affect the rest of the body quickly!! So my best advice is to be proactive in those areas with chiropractic care, massage therapy, physical therapy, and just plain hard work on her own in order to avoid any other issues. The pain that sometimes is almost unbearable as well so you need to find a really good solid pain management doctor that understands and believes you! I think the key is on the part of believes you.
In addition to going to get to see the new orthopedic surgeon, I also located a fabulous pain management doctor that really seems to believe and understand the mechanical issues of the knee that cause pain. He is actually the first one that I actually looked at my knee. He diagnosed it with chronic regional pain syndrome as well so I think many of you probably have that in addition to arthrofibrosis. He is it least actually trying to find ways to better manage the pain without just medication. We tried the new DRG implant for a week but I didn’t feel like it was providing enough relief to have it permanently implanted yet. But, it may provide relief to many others in the future. We have tried the common nerve blocks and injections but obviously the mechanical parts and problems cause many nerve and pain issues. Tuesday we are trying some ketamine infusion and I know it probably won’t help much for the pain but the research shows it may help with mood, depression, other things that the pain obviously contributes to. It’s very expensive but if I provide some relief or even placebo effect, I’m going to try. Anyway, it’s at least nice to see that a doctor believes me/us and then actually feels like a partner in the process to reduce the pain. Anyway, I apologize for the rambling but I appreciate your response and I’m glad to see that it wasn’t way too much as I cringed once I sent and reread it! Hahah. This nightmare sometimes causes those types of reactions I guess.
Best of luck to all of you and thanks again mike!! I’ll keep you guys posted on my journey and look forward to reading about some more successes on here!!
Reply
C.Arthur says:
September 4, 2017 at 6:55 pm
Mike,
I forgot to and must reiterate what Rick said that I CANT believe you do this without meds!!! Kudos to you my friend as I’ve tried and done it at times BUT I can’t imagine doing it totally without for long term BUT I think it further reinforces how strong people are that deal with this disease! That point alone and this website totally motivate me to continue every minute, hour, and day when sometimes it just feels like you can’t go on any further. It’s like, what’s the other option? There is no option other than to move forward right? My flexion doesn’t seem to be losing much thank goodness but my extension is getting tougher and tougher to maintain so I feel for you as well! I remember my Surgeon saying to me that I had to maintain the extension and I always thought the flexion was the most important but I know they are both important but I just really remembered him emphasizing extension. Anyway, I just wanted to applaud you once again on the fact that you do this without medication! Keep fighting and try to stay positive as I am hopeful that there will be more advancements in the way of pain management or at least understanding etc. for this disease in order to find some answers in the future!!! They have to do more research and education in this area!! Stay strong and god bless!
I’ve had a total of six surgical procedures on my left knee after ACL Reconstruction. My initial surgery was almost 3 years ago. My flexion and extension have never returned to anywhere near normal! I walk with a limp and have developed a bad bunion and had to have a strayer procedure (where they partially cut thru your Achilles Tendon). I’ve had physical therapy after each surgery (without much, if any improvement) and my numbers are 70 and 30. I live with constant pain! I did find a new study with supporting evidence that helps me understand this condition. It’s located on the website nature.com. Type in Arthrofibrosis in the search area and a see an excellent study on this condition/disease that was released on 3-26-19. This article explains that those with ACL Reconstruction have up to a 30% chance of developing this condition/disease. Everyone should read this before having a ACL Reconstruction. I was told that I’d be back to my normal life within 6 months after my initial surgery. Instead, my life has drastically changed! I wish I hadn’t had the surgery!
I had a total knee replacement Nov2017. I kept telling the Drs. about this extremely hard marble shaped scar tissue substance sometimes small and getting inside the knee. Sometimes preventing any movement at times, very little movement. Sometimes large and attached to portals. Most times the small ones gather along the incision. I had to have revision surgery March 13 2019. Having same problem. Four Drs. None with any knowledge of this type substance. I have Parkinson’s they want to blame that. My neurologist completely denies that as Parkinson’s related.
I had my right knee replacement surgery back on December 5, 2018. From day one after the surgery, PT, Bending, ROM, & Pain were problems for me. My surgeon ordered an MUA for my knee on January 14, 2019. Fast forward to today where my ROM is 85, and my extension is 12.My poor knee simply does not bend properly or extend properly. My 2nd opinion Orthopedic Dr I saw last week indicated that I have Arthrofibrosis of my knee. He indicated that going to PT was no longer necessary as my ROM would probably be like this for the rest of my life.
So my knee is constantly swollen and warm. I have literally lived on my reclining sofa since the knee replacement surgery. If I am not constantly elevating, resting, and icing my knee I am screwed. I am only 61 years old, and the reality that my mobility will probably be very poor for the rest of my life is very disturbing.
My mother is suffering through arthrofibrosis 9 weeks post op for TKR and it is limiting her flexion range. She is 79 years old, has now had one manipulation treatment, and now is having daily PT with extraordinary pain.
Does anyone have a recommendation for a PT that has a high level of experience with this condition in the Detroit area?
Please help, her spirits are being affected pretty severely. Any other advice is welcomed.
Google Dr. Eric Topol. He’s a cardiologist who had this same problem until he finally met a physiotherapist who knew about this condition and was able to treat it successfully. I don’t know where they’re based but perhaps it’s a start.
No matter if some one searches for his essential thing, therefore he/she needs to be available that in detail, therefore that thing is maintained over here.
is there anyone in arizona that specializes in Arthrofibrosis? I had TKR on both knees back in 2011 and 2012, then an illeotibeal repair that caused an infection in my left knee.. after an enclosed wound pump and 3 infections, and another surgery the infection finally went away. that left me with my left knee without PT for a long time. any pt i had didnt help, without insurance now for all these years.. my leg will not straighten, now my back hurts so bad after standing less than 5 min. my legs get so stiff when i sit for to long or stand im so scared i wont be able to work much longer if i dont get help.. i have heard manipulation can actually do more harm this far down the road.. does anyone know anyone in arizona that knows about this arthrofibrosis, i live in a small town and have read that if i do more PT now.. it better be with someone who deal with Arthrofibrosis or your just in for alot of pain.. hopeing someone will comment.. and have some hope for me..
Connie my story is very close to yours. Just yesterday got a call from mayoclinic that they can’t help me. I’m searching high and low. Please let me know if you find a dr who can help
Hi, I just posted about my experience with this condition/disease. Please go to the website nature.com. Type on the word Arthrofibrosis. A new study was released in March of this year that has helped me understand this condition. It’s very extensive (24 pages) with tons of supporting documents.
Hello Everyone. Here is my story. I’m a 50yo male. My problems all started back in 1984 when I tore my left ACL in High School Football.
11/30/2007 on Thanksgiving weekend while standing on a ladder putting up Christmas decorations I fell off the ladder. I then tore the same ACL and had to have ACL replacement surgery. After that surgery I had the range of motion but was in constant pain and never able to walk up steps or run correctly again.
04/17/2008 I had to go back into surgery to have the plastic screw removed that was used in the ACL reconstruction surgery removed. My leg got infected and I had a drain in my knee for 3 months.
Things went downhill between 2008 thru 2015 and I ended up having to have a TKR on 10/15/2015. The surgery went well but I was experiencing severe pain and I was only able to get 65 degrees of motion.
I had a MUA on 12/01/2015. They were able to get 137 degrees out of the knee. I started PT 2 days after and was able to get 90 degrees to start. Then I went and was working with a different lady 4 days after my MUA and things went really bad. As she was forcefully stretching my knee. A loud pop was heard. She stopped and let go of my leg. My knee swelled up to the size of a football and severe pain set in. I couldn’t get past 30 degrees of total motion and was unable to bend or straighten my leg.
I had another MUA on 03/01/2016. Again, they got 137 degrees out of it. They even showed me pics of my knee bent and my heal touching my butt. Still no luck with getting past 30-35 degrees of total motion. They got me a JAS EZ flex on brace. I still can’t get past 35 degrees total range of motion.
In 06/30/2017 I went in and the surgeon did a MUA & Arthroscopy on the knee to remove scar tissue. I started PT a few days later. Still no improvement.
In 09/17/2017 my Doctor finally told me there was nothing else he could do and washed his hands of me.
April 2018, I ended up tearing the meniscus in my right knee from the severe limp I developed from favoring my right leg. I also started having severe back pain and left hip pain.
Here it is March 2019 and the knee is no better. I still need Arthroscopy on my right knee. I had a new Doctor ready to do both knees, but he ended up loosing his medical license do to a kickback scam he got involved with.
I can’t walk upstairs, ride a bike, run, sit in a chair correctly of even sleep comfortably. The quality of life sucks. I’ve been so depressed. I regret doing the TKR.
Can anyone or does anyone know of an Arthrofibrosis specialist or a good Orthopedic Surgeon in the Central Florida (Orlando) area…Any help will be a lifesaver. As of right now I’ve lost all confidence in the Florida medical system. Thanks everyone.
Dr George Haidukewych at Level One Orthopedics at Orlando Health is excellent. People come from all over the country to consult with him.
I had a TKR Nov 2017. Then a manipulation in March 2018. Then a revision in April of 2018. During the revision he replaced the original prosthesis with a smaller ones cap. I also was told the prosthesis was lodged stuck in my knee cap when they reopened my knee for the revision. During all this time I had been undergoing very aggressive physical therapy;pushing down on the knee, bending the knee, then multiple other exercises I performed in outpatient therapy and everyday home therapy. After all this aggressive therapy I cannot bend my knee completely. I walk with a limp. I still do my exercises at home everyday. I just stopped using the Dynasplint 2 days ago at the permission from my surgeon. I had been using it nightly for 5 months. Yesterday my surgeon said I had scar tissue still and that is the problem but he felt I was improving, hence is the reason I was to return the Dynasplint. Is there a point where no amount of therapy will get rid of the scar tissue?
This might help some of you suffering. I had a TKR about 2 years ago.
Complications after surgery — I could not bend my knee. Then x 3 manipulations over the course of 7 months. I still could not walk or bend my knee. During this time — I was going to PT. Nothing they did
helped my situation. I changed to a new a new PT center. A lady there had treated patients with arthrophibrosis. What could I lose — might as well give it a go — I was at the end of the line!!
She made me lay down on a table — she then wrapped my leg with heavy heated wraps. My legs were extending slightly off the table. She then tied on a 5 lb ankle weight. I would then have to lay on the table for 30 minute increments. By the time 30 minutes was up — I was screaming
in pain. I would then rest for 10 minutes. I would then repeate a 30 minute session. She was streching my knee not forefully bending it. I started to improve rapidly. Within three weeks — she had me walking much better.I hope this helps — pls give it a try.
Thank you for sharing your experience. Can you tell us if you were lying on your back, and were your knees totally dropped off table like at 90 degrees flexion, then weighted?
Trying to get a visual…
I’ll try anything- my rom has been destroyed by an mpfl graft, and arthrofibrosis afterward- and my yoga practice with it.
I’m interested in all of your details also. I will ask my PT to reproduce the technique. What were your original numbers? Final flexion? Does the stretching last? My experience is that whatever I earn in therapy is lost as soon as I walk out the door. Thank you.
My doctor never told me this was the issue with my knees. I am 48 years old and trying to still work but cannot sit or stand for long periods due to my back and now both knees. I have lost a lot of my ROM and I cannot straighten either leg with my right leg being the worst. Am I ruined for life with my legs? Both legs are completely bent with R knee being worse. I am finding it harder and harder to walk. I have been going to Dr.’s since a back and knee (shredded L ACL) injury in 2003.
Just had my right knee revision surgery done for the second time after a failure of the tkr components. Have always developed arthrofibrosis after these surgeries and now my big question is, should I go really hard with physio, to the point of tears, to keep breaking through scar tissue or go at rehab easily so as not to keep tearing scar tissue. I am going at it as hard as I can right now, three weeks post surgery but keep hearing different things from different doctors and different physios. What is the opinion of anyone who has beaten this terrible affliction. It means everything to me to try and beat this and really hope I’m going in the right direction.
Look into the x10 therapy
My husband is having same problem, one year post surgery. We did not use x10 due to our location. Would Definitely suggest you try it if possible. Read testimonies
Keep up your spirit of hope
I used the x10 for I full week. I could not make progress. It is a good therapy, but only for normal cases.
Hi Bob:
I had TKR in my left knee on March 28, 2018. Arthrofibrosis set in around 3+ weeks later limiting ROM. About 16 weeks later my doctor performed the Manipulation.
Went to PT the same day of MUA to start exercises, however, knee still remained swollen from scar tissue, stiff and painful and ROM settled in again at 85-90 degree bend and could not walk without pain, stiffness and limping.
I had reached my insurance maxium for PT and because the therapist could not document any improvements, insurance would no longer allow me to continue on their dime.
I found another therapist (which I paid out of pocket) just to massage and stretch the knee 3 times a week for three months, then 2 times a week for two more month.
Plus therapist gave me exercises to do at home which I faithfully did. I also purchased a recumbent exercise bike.
No, or very little, results for the first two months and then I started walking better and eventually waking without limping. The walking took away the pain in my back and made me want to get out more which helped strengthen the knee muscles.
Eventually, in my 10th month post surgery, I was not only able to walk without a limp (still some stiffness though) and begain to walk down the stairs properly. I am still goig to PT for the stretching and still doing my home exercises in my 11th month post surgery. The scar tissue is still limiting but am happy for the slight improvement, slow as it is. The pain is gone, stiffness has decreased, movement has increased.
I might still be able to gain a few more degrees without having the scar tissues cut out.
So my advise is to get seek counsel from a PT on the best exercises to strengthen the knee, do the exercises and continue on the bike daily. Get out and concentrate on walking properly (heel, toe, bend ankle) through the pain and stiffness and see where you are a year post surgery. Please don’t give up.
Fran
I pray your journey was true for all of us. I am thankful you have had some progress. Right now I am ready to give up. I need to see someone has made progress.
Fran what was the name of the pt that did the massaging and stretching
Would love to look them up to see if they could help me
Hi is there anyone in Australia with any expertise, especially Western Australia. I was so active and competing and now nothing. Only one surgeon out of 26 diagnosed this condition and he offered no hope.
I had a TKR on my right knee in October 2016. I was never told that there could be a possibility of the procedure going wrong.
Instead, I was told my life style would be so much better because I had suffered from osteoarthritis in both knees for so long.
Since then I went through rehab after the surgery, physical therapy, water therapy, 2 manipulations, much pain and suffering, and three Orthopedic Surgeons, two, that did not want to touch my knee.
Along with this, I had planned a move to another Georgia, in January 2017, and when I landed at the airport, my Primary Care doctor called telling me of the results of my mammogram, part of my physical check up before I left, and that it was abnormal.
We were looking for a possible Lymphoma, since my Lymph nodes were swollen, underarm and groin area. Needless to say I was shocked and totally disappointed.
This resulted in a return to the Boston area, additional biopsy surgery on the largest groin node. It was benign.
Following up, the inflammation level in my system was very high causing the lymph nodes to respond. The OS said it was not infection, just inflammation, argumentatively.
He did a manipulation, I left Boston, and still dealing with this condition.
I am writing to say I had sent for and received my medical record, and find that he had written in a final diagnosis on the manipulation form after the procedure, Arthrofibrosis.
He never discussed this with me, or suggested any further treatment or any doctor who could care for me after my move. Why??
My knee is bent, painful and still has inflammation, that he said would go away. I was left in the dark,until I found this site to inform me about this condition.
I will seek out a doctor on the list, in my state of Georgia.
But, I do feel that my original OS abandoned me, and maltreated me when he did not inform me of his diagnosis, or suggest where to go if he was not expert in this area. Also, what was he basis for his diagnosis before, and after his manipulation, when there was no scoping of the knee or examination, by him.
Is this malpractice??? What can I do other than seek out an expert in my state? I do understand there is one on the list.
Look at this site,
http://www.injuredathletestoolbox.com
http://www.kneeguru.co.uk/KNEEnotes/primers/complications-rehabilitation/key-arthrofibrosis-resources-kneeguru-site
I would just like to use this opportunity to share a positive little story with people out there suffering from arthrofibrosis:)
I remember when I got my knee atrhrofibros diagnosis after an ACL replacement surgery some years ago, I searched the internet for all the information I could get. Among all academic litterature I found, I couldn´t stop myself from also reading about peoples personal stories. And then I got really sad and scared. It seemed to me there was overwhelming stories with “bad endings”- people with endless pain, wheel chair and bad lives. I sat down and cried and promised myself to do all I could not to end up like that. I was 30 years old and way too young to loose one leg.
I followed a heavy physiotherapy program immediately after a “clean up” surgery, and yes -it was a lot of pain and hard work. But I knew that if I did everything right I would give my body the best chances to recover. It took loooong time and I have no idea of how many hours with painful mobilizing and tiring muscle exercises I have been through, and still have to do a little bit.
BUT: after 5 years I am now able to have a complete and great life with lots of activity!!! I am an active dancer, sailor, runner, hiker and climber. My knee has full extention and almost full flexion. I still have some very mild pain, but it is maybe a total of 3-4 days every year- almost nothing. And almost never any swelling or heat in the joint.
I now understand how extremely important it is not to give up and get depressed. I believe there are lots of successful stories out there, but these people doesn´t take their time to share their stories on a page like this. Instead of digging yourself into this sadness for too long- be constructive and read and learn a lot- and practice what you learn. Keep in mind that you can not recover from this illness without doing a lot of physiotherapy. You have to take it serious, be strong, patient and never ever give up!! I got a lot of inspiration from Heidi- “injuried athletes toolbox” from whom I found good and positive advices in my situation. Highly recommend!
Stay positive, and do everything you can to make the best out of you situation! It is possible to get better and even become completely healthy:) 🙂 🙂 And best off all, you learn to appreciate everything else in this life that is worth being thankful for.
Thanks Julie for sharing your story. It helps to read good endings 🙂
Thank you , I needed a story with a great outcome. I have had issues since my initial ACL repair in February . I am making very slow gains, and I feel very down . I’m 43 with three kids and I can’t give up , but some days it seems like I’ll always be like this. I hope my story is like yours, sincerely ,
Nikki Sullivan
Thank you, this was much needed
I had a RTKR on 4/20/18. Within 4-5 weeks I started losing mobility when extending the knee after I had been seated. I had a distinct clunk, and severe pain and crepitus. My OS originally blew me off, then wanted to do an open surgery. I refused, and had an arthroscopic lysis of adhesions. Knee is hot and painful, with radiating pain. Quads are trash. Knee is hot, sensitive and stiff I can’t drive Any distances. What next? I need to get on with my life
I had basically the same thing happen. After the lysis he got 95 degrees on the table. Not much! After that I used CPM and did only slow slow gentle stretches. Plus lots of icing. It took about a month before I passed 90 degree bend. Read Dirk Kokmeyer’s article on recovering from arthrofibrosis. You have to actually minimize PT initially because the inflammation is associated with arthrofibrosis.
Hi,
I fractured my left knee tibia plateau on 02/04/2018 and went for surgery on 9th Feb. It was an arthroscopic partial open surgery. I started PT on 20th Feb and doing continuous PT (3 times a week) since then and got around 90 degree active flexion with extension around 3-5 degree. My Dr says I developed arthrofibrosis.
– I saw 3 different doctors in the Seattle area and they all have different opinion. Doctor who did the surgery seems convervative and suggest to continue with the PT – Second doctor says to immediately go for MUA while 3rd doctor says to wait for another month and then possibly go for MUA along with arthroscopic removal of scar.
Now I’m completely confused. Any suggestion as what to do?
– Any recommendation for doctors who have experience of treating ‘fractured knee arthrofibrosis’ in Seattle or WA area?
I’m in pain and very frustrated – request you to kindly advice on my condition.
I flew from Seattle to Salt Lake City to see Dr. Leon Paulos. Its a short flight, he is nationally known for fixing Arthrofibrosis. I highly recommend him .
Thanks Teri.
Can you please explain the condition you were facing? What was the treatment given to you? Was it MUA or surgery or anything else? Was it completely fixed?
Thanks again.
Hi there,
I have had an ACL graft and meniscus repair then a second meniscus surgery. I have now been diagnosed with a small fat pad impingement and Arthrofibrosis on the lateral side of my right knee (surgery leg). I don’t really know what to do, I have done a lot of physiotherapy and feel like it is not working. Has anyone got any advice on how to improve the outcome of this injury, does massage help break down the tissue?
Also is surgery an option if the pain continues.
Tom
Hi, am 36 year old male based in Singapore who underwent left ACL reconstruction surgery. 15 months post-operation, my knee flexion is only 100 degrees and extension +7 degrees. I saw two OS and they both believe I have arthrofibrosis. However after doing research especially on this thread I am convinced I need to see a knee arthofibrosis specialist. Any recommendations of specialists here in Singapore? Please help I am desperate.
I was just told I have AF but don’t remember me injuring my shoulder nor did I have surgery. My symptoms started off with my bicep area hurting (was told by first doc that I had bicep tendonitis) .. when it didn’t get any better went for PT was told it was rotator cuff … got mri was told I had AF. Don’t know anyone who has this but is it common to get shooting horrific pain when you move your arm in a certain location? There is a constant throb but if I move a certain way it practically drops me to me knees . Starting PT in a few days but so nervous it’s not going to help
I had a knee replacement in October ’17. With therapy made slow progress with flex, but not with extension. In January, had “manipulation”, then continued therapy with no improvement. Was told that genetic tendency to scarring could not be helped with continued therapy and to expect total of 18 months for improvement.
I have not been able to find anyone in Hawaii with arthrofibrosis treatment experience. Is there anyone in Hawaii or near west coast that can help?
Hi Larry,
This is Mona. I had AF since my TKR surgery in December 2016, 3 more surgeries then. To be very open I doubt you will find anyone with experience treating AF, there is no treatment per ce, you just need to start trying multiple things. This is the list of items I have tried so far:
1- Cortisone injections (they give you temporary pain relief for 1-2 months)
2- Graston therapy using densed stainless steel tools. I got the tools myself on Ebay and watched a YouTube video then asked my PT guy to learn. This method helps soften the hard tissue, you can do it yourself once or twice a day
3- DO NOT stop stretching and flexing your knee exercises, don’t get discouraged
I hope the above provides some help. Good luck.
Thank you, Mona, for listing the 3 things that helped.
I, too, have AF.
Am continuing exercise and PT, out of pocket now as I used up all my allowed insurance visit.
Will get that tool and try to learn how to use it properly, given you said it helped.
Best,
Fran
I am a 54 year old woman from the UK who has participated in sport most of my life. Thirty years ago I snapped my cruciate ligament whilst playing ladies football, I had a number arthroscopies before I had an ACL reconstruction in 1991. My knee never fully recovered and I stopped playing contact sports. In 2010 my knee was deteriorating and I went back to see my specialist who told me I needed a knee replacement but as I was in my mid 40s I was told I was too young to have this procedure. In January 2017 I was finally admitted to have my knee replacement as I was struggling to walk and the pain was awful. I was told that it would take 12 weeks for me to recover. Over the next few weeks I struggled to bend and straighten my leg. I was at the physiotherapist twice a week and things were getting no better. I was re admitted to hospital in May 2017 for manipulation under anaesthetic, unfortunately this didn’t really help. When I went back to see my specialists he said there was nothing more they could do for me and I left feeling devastated as I was still using crutches to get around. I spent a fortune hiring a CPM machine to help me try to bend and my knee but nothing changed. My physio told me to see another surgeon in Manchester (about an hours drive away) who took me under his wing. He did an exploratory operation in December and said the arthrofibrosis I had was very severe so I decided to let him remove the knee replacement fitted in January 2017,cut away the arthrofibrosis and re fit a new knee replacement. This will be happening on June 5th, in just over 2 weeks time. I have basically spent 16 months on my back, off work on the sick, cannot sit up for long as my knee swells badly, can’t walk far on my crutches as again my knee swells. I am praying that this operation works and the arthrofibrosis doesn’t return but I am sceptical. I have read lots of forums and haven’t really come across anyone who has had this ailment who are now arthrofibrosis free and living an active life. I will keep you updated with my progress…
god bless you wendy skerritt I am pulling for you. I feel your pain and aggravation. at 58 I had my first surgery in 1981. many, many more since.
however the pain however the range of movement we must move forward and live. i live a full life working raising kids and dogs all that. i have learend to deal with my adversity the beat I can without going insane. I have partitioned my brain to run the fibrosis portion in the background. silently yet always present. as stated before every step accounted for every movement meant to protect myself from falling or otherwise creating more injury. I wish this never happened I cannot go back in time. I trudge forward thinking of others who depend on me and I smile thru it. best of luck and I do understand all of you here.
mike
There are doctors using an experimental drug that slows down fibrosis at the Steadman clinic in Vail COlorado. their names are listed on this website. It is used to slow kidney disease as well. Should be taken a week or 2 before surgery and 4-6 wks afterward. Has shown great promise.
Also patella mobilization in all directions 4 X daily to keep patella from adhering by sterile gloved hands. And flexión but not too vigorously. Need a good PT twice daily. Patient also twice daily. Infection prevention is imperative. Keep everything sterile. Infection means hardware must be removed. Antibiotic IV for months. Replacement of hardware. So be vigilant! Buy sterile bandages and gloves. Big web retailer a source. Best of luck!
Hi Wendy, your story is uncannily similar to mine, hiring of CPM machine and all…
I’m also from the UK and was 54 when I had TKR on my right knee at the end of Feb this year, I then developed AF about 7 weeks in. It took a few more months of me saying over and over again that something was wrong before my consultant sat up and took notice and diagnose me. Since then I’ve had 2 MUA’s and also scar tissue removal all to little effect.
I spent 6 months off work so far between procedures, I’m still on double crutches and debilitated by this condition but I’m back at work part-time but it’s a struggle so I’m doing my best to get on with my life and adapt.
My main reason for replying to you was to see whether you had the surgery to cut away the arthrofibrosis and fit a new knee?
Anyone out there develop arthrofibrosis after only having an arthroscopic procedure? I can only find info about developing arthrofibrosis after a TKR or other “open” surgery. I’m 35 and developed pretty severe arthrofibrosis in Aug 2017 after what was a very simple procedure. I’ve since undergone a lysis of adhesions in Oct 2017 and a MUA with a BMAC injection in Feb 2018. I have been doing PT at least 3 days a week since the first surgery. My Dr has ruled out infection, autoimmune disease, tumor, and CRPS. I have stretches of time where I make good progress, only to stall out a few weeks later. I’m just curious as to what could have caused me to develop arthrofibrosis and if there are others out there with a similar situation?
mike s says to Kortney:
Kortney this is a comment I left Feb 5th to Alvin.
Like I mentioned some of us are just predisposed to this monster.
mike
February 5, 2018 at 12:13 am
Alvin I experienced my first bout with af with just a scope and repair. I managed that no problem for years. directly after the total replacement hoever the af went turbo in my leg. nothing nor no one could keep up. as stated in other posts the af is up to my the middle of my quad. us 1% folks are pre-disposed.
I have developed Arthrofibrosis after a second knee replacement. I was told I would never walk the same again. This happened in 2014. I have learned to deal with it because I was told another surgery will not guarantee improvement and after 2 surgery’s and an manipulation I just did not want to go through it again. I have started working out and my knee is stronger. Stray strong and try to do what’s for you mentally and physically. Wishing you the best of luck
I also developed AF through a simple scope. Had a manipulation and scar tissue removal scope. All of this within 8 weeks. Still struggling to achieve extension. Currently at -4. Flexion is great. I am determined to fight this and get back to my life!
I am 9 months, post-op, bilateral TKR. Was diagnosed with Arthrofibrosis. Had an MUA Dec 21st. I am SO miserable, frustrated and hopeless that I just don’t know where to turn. The pain is crazy! Even 10-20 minutes of “life” (standing, walking, moving) is too much! We’ve done every test possible, tried more modalities than can be listed…NOTHING helps!
I read these posts and just get more hopeless. I was hoping scar removal would help, but the posts have me scared of that. Cortisone injections don’t seem to provide relief. Has anyone found anything that helps at all?
Sigh…
Hi Kim- I am reading through these stories and yours sounds a lot like mine- albeit a different knee surgery, but the pain is so insane. Just wondering if you ever healed.
I have a condition that has been described as Arthrofibrosis of my ankle following to an injury to and surgery on my deltoid ligament. I have looked through your abstracts and the articles you reference on your website and you have many interesting articles regarding knee arthrofibrosis. I could not, however find any information about the ankle. Do you have any references hints or ideas that may be helpful, particularly pertaining to rehabilitation procedures and techniques please?
After my lst knee replacement, horrific pain, unable to get good range of motion, very swollen, hot knee, I was diagnosed with CRPS (RSD). I didn’t believe I had that condition, and didn’t want to believe it. Just last week, (almost 6 years post lst replacement, (2 revisions, 3 scar tissue removals, and 3 MUA’s,), I have very uncomfortable itching/burning/stabbing sensation on both elbows,especially when I lean my elbow on a hard surface. I’m thinking it could be CRPS. So now with the Arthrofibrosis, should I cancel my Open Lysis surgery on that same knee. I have 24/7 pain, inability to walk correctly, stand, bend, etc. etc. In the near future I need back surgery. The back surgeon said it would be beneficial if my knee was more stable in order to handle post surgical back rehabilitation. Do I not get another knee surgery? I’m very concerned that I might make the CRPS symptoms worsen. Yet, I want/need to not have the pain/discomfort and limited ability to enjoy life. Any opinions. My knee surgery is scheduled for the end of June, only because I’m a teacher. I want my life back. Between my huge, warm, stiff knee and the severe Sciatica going down the other leg, groin, and butt, I’m a physical, and emotional mess.
You definitely sound like you have crps. My neurologist who specialises in crps told me that surgery can aggravate the crps but if your pain is already that bad and the surgery can help with your mechanical issues then go ahead with it. Each case is different. But my crps pain is horrible I get it 24/7 most of the time at a 10. My ortho had a surgery that he said would help with one of my mechanical issues so I had it done, I did have a horrible 2 months but it helped with some of my mechanical pains so it made it worth it. At the end of the day it’s down to what you feel is right, will the surgery help improve pain or movement? Movement helps crps and when you have multiple issues you need to deal with them one at a time.
I should clarify the crps pains are still there whether they are worse after the surgery is hard to tell because crps is hard to understand even when you have it. All I know is I don’t have a pulling pain where my patella Baja is because I have a plate there now, but I do have pain from the plate instead. You will find it hard to find a doctor who will operate on your limb if you are diagnosed with crps I saw doctors for a second opinion and most of them said they wouldn’t because of my crps. Even after already having had surgery on my knee I’m in a similar position to you not knowing whether I should have another surgery on my knee due to the crps, it is very frustrating. Sorry if that is no help at all.
Have you thought about amputation?
Yeah at the moment I am tossing up between amputation and fusion but half of my doctors agree with amputation the others don’t. I do think quality of life wise amputation is the way to go but I think I just want to take it one step at a time if that makes sense
Sorry couldn’t tell who this was too
I was injured in December 2014, I was since diagnosed with arthrofibrosis, complex regional pain syndrome and patella Baja. I have between 0-20 degrees range of motion but my leg is always kept out straight as any movement causes me pain. I am unable to lift my leg as I have no control of my quads. I currently use a wheelchair everywhere other than my house. The complex regional pain syndrome causes my knee to interpret everything as painful. The patella Baja was a contracted tendon that pulls my knee cap down I had a tibial shift last year to try help with that. I’m taking medication for the CRPS as well as the arthrofibrosis. I have an interthecal pump that has clonidine and hydromorphone, I also take lyrica (for nerve pain), baclofen (for spasm) and femostin (hormone replacements). I also have palexia for when my pain gets really bad. I’ve had cortisone injections about 5 time I’ve had 2 arthroscopies and a manipulation followed by the CPM but I couldn’t last even 2mins and only got to 20 degrees. I’m currently looking at a knee fusion to try and get out of the wheelchair and do more with my life. I had a brace made up but due to the crps I couldn’t tolerate it it was one that went from mid shin to mid thigh, my orthopaedic surgeon wanted me to get a full leg one but the place wouldn’t make it. Has anyone had any experience with a knee fusion? has it helped?
This is my second post, wanted to share some information maybe it will help some AF sufferers. I had my TKR in December 2016, was doing very well post surgery with daily PT, within 6 weeks I started feeling pain, swelling and stiffness, with reduced ROM. Has manual manipulation, two arthroscopic surgeries since, last surgery was December 2017. Tried experimental medications, PT, and everything else anyone can imagine. Still the hard scare tissues kept coming back and spreading to encapsulate my knees and spreading to my legs and thighs.
I heard that cortisone injections may help so went for it four weeks ago. This is the best I have felt since the original TKR surgery. I feel the cortisone injection to the knee, is helping to break the scare tissues, I constantly feel cracking in the scare tissue layer covering the knee. This coupled with ‘deep tissue mobilization” therapy by my “hero” therapist, who started also to use “Gratson” tools(look for it on YouTube).
All of the above is helping, My ROM is improving, I can for the first time in months without the help of a cane, pain is minimum and I am very encouraged. I wanted to share my experience with everyone, hoping that this may help others going through what I have gone through struggling to fight this stubborn scare tissue build up.
Graston tools are medical tools, made of high density steel, my therapist use it to break hard tissue and “mobilize” it so it is not “glued” to tissues, muscles and my knee cap. There is a video on YouTube you can ask your therapist to watch and try it on you with the tools. Good luck everyone
I had a Partial onmLeft 9/13, then converted to total 9/15. Persistent swelling, warm to touch etc. had to have ankle surgery on the same leg and my podiatrist offered MLS Laser after the ankle surgery. Best recovery I’ve ever had. I’m now doing 10 sessions on my knee and the swelling, pain etc is extremely improved. Another surgery is not an option. I paid out of pocket for the laser therapy but it’s completely worth the price!!!!
Hello I had my first TKR on my right knee January 8th of this year and already had to have a MUA on March 5th. My knee will not straighten and will not bend properly without excruciating pain. My PT spoke with my surgeon and he tells her that MENTALLY I am blocking progress! I am in PT five days s week and do my home exercises yet my ROM seems to be stalling.
Could this really be a mental thing?
Nicci, I have had arthrofibrosis for decades and, on more occasions than I care to remember, was told “It would bend if you wanted it to” by both surgeons and PT’s who know absolutely nothing about arthrofibrosis. If you have a knee full of scar tissue there is no way on God’s green earth that it will bend, regardless of what they do, and they more they try to force it the more inflammation, tearing and bleeding they will cause which exacerbates the problem. My current rheumatologist had a very accurate description of a knee with AF. He said “it is as if your knee is internally casted in cement”. While you may have apprehension because of the pain, if you have AF it’s not going to behave like they think it should.
no , it is definitely not in your mind. I had a left a left TKR in 2007 and due to the extraordinary pain and the overhealing I have been left with a stable, but limited rom knee. i had the knee manipulation 6 weeks following surgery. i have less than 90 degrees of motion and find it difficult to stand up. I was told by an orthopedic surgeon years later that the pain was thought to be from RSD and it happens in 30 % of knee replacements. I have gone to therapy on a regular basis for years. The problem now is what am i going to do about my right knee which needs surgery?
My lst TKR (2011) left me with severe Arthrofibrosis. Had 2 revisions, and 3 scar tissue removal surgeries/(open lysis of adhesions,)…and NONE were successful in reducing the swelling and the pain in my knee, and leg. (I went to Chicago for one surgery, Dr. Finn-specialist in the field, spent 2 months there, and still no success) Dr. Mayman in NYC is doing a trial study using an amniotic patch to try to prevent scare tissue from growing back. Had that surgery last summer, but unfortunately my body produced an opening in my knee area, however NOT THE SURGICAL SITE, that kept bleeding, had 2 ER visits, and was forced to stop my PT program for awhile. I am planning to have this surgery again, BUT, should I? After 6 surgeries, should I bother to try again? Has my knee told me that there is no hope? Should I just give up? I ‘m in pain every day, all day for going on 6 1/2 years. My quality of life/activity/happiness, has diminished. I’d like to be active and happy again. I know there are no guarantees, and the choice is all mine. I’m not concerned about the surgery. However it’s 2-3 months of PT and healing AGAIN! If you’ve had similar, any thoughts, please let me know.
Hi my name is Russ, I’m 55 years old. I had my first total knee replacement in January 2016, went through hell with it, had a manipulation a few months later, then had it scoped, never got better, finally found out I got Arthrofibrosis. After still fighting with the terrible pain and swelling I went to Doctor in Colorado, he found out The first knee replacement the doctor put in was too big and had the bottom part in crooked too boot. He advised a total knee revision. I just had a total knee revision in Dec 2017, still terrible pain & swelling, they had me come back in for a Knee manipulation in Feb 2017, the dang pain is worse now than it was. Getting very discouraged and down. The doctor now wants to put me in a knee felxation splint, has anyone tried one ? It just sounds to me like a lot of pain and not sure what it is going to do about the Arthrofibrosis !!
I was recently diagnosed with arthrofibrosis of the elbow joint. Almost a year ago I took a good fall and shattered by radial head and tore three ligaments in my elbow joint. I underwent radial head replacement where I received a prosthetic radial head. I had two additional surgeries to get my lengths (radial head that is) correct. Now sitting here a year later, my surgeon says I have excessive scarring and possibly small bone fragments possibly around my elbow joint. I’m awaiting my referral to another surgeon who has agreed to take me on and do an open surgery release of my elbow joint and hopefully get some mobility back.
As for pain its up and down…some days its awful and some days it is there, but tolerable. I have very little flexion and mobility in my elbow joint and can’t rotate my wrist and have trouble with mobility in my hand. Oh–I’m right handed and this is my right elbow. I often have pain not only in my elbow joint, but also in my forearm and shoulder.
I’m hoping my new specialist can help me. Can anyone tell me what to expect and what some options are for me. Thanks!
I have been living with arthrofibrosis since my right knee replacement in 2015. Last spring I received Physical Therapy for Graston Technique and though it improved my ROM, I still do not have full knee flexion and extension. Because of compensating for the lack of range in my knee, I now am dealing with ano achillies tendonitis.
I now have to have my other knee replaced and have partnered with my physician on a care plan to try to have a better outcome. I am still concerned about how the right knee will impact my left knee replacement recovery. If this is similar to your journey, do you have any Suggestions?
I have posted before. Is there anyone out there with knowledge of someone in Scotland who deals with Arthofibrosis. All the comments seem to come from America. I am due to have a revision of TKR and I am dreading it. I had aggressive therapy after my original TKR. My knee was like a balloon about to burst and I was always in excruciating pain. I have had the same pain from day one of my op and have always been of the opinion that something is not quite right apart from scar tissue that I think I obviously now have. I did everything that was asked of me regarding physiotherapyand I was always worse off. Can any professional in Scotland advise whether I should go ahead with the revision. I have been told that there are no guarantees. I just want to be able to bend my knee without pain so that I can sit in a chair comfortably.
Is there any medical professional who can reply to our questions about arthrofibrosis and it’s treatment online?
Are there any specialists for arthrofibrosis in rhe south Florida area?
I had a TKR January 2016 and 6 months later I had an MUA because I could not bend my knee, consultant got my bend to only 90 Degrees. After aggressive physiotherapy and excruciating pain,my therapist would not treat me any more because it was just causing more pain. I bought an exercise bike and persevered in terrible pain. The day after exercising I always felt worse and the bend in my knee was just not happening. Consultant said that I had Arthofibrosis and as there was not a lot known about this he couldn’t help me and sent me for a second opinion. Second Consultant is willing to do a revision of my TKR (with no guarantee of success), and replace the prosthesis with a hinged joint which he says works better for patients who have a revision. I had a guarantee date of 23rd January 2018 (today) for my operation only to be informed that my Consultant’s waiting list is 26 weeks. I am now at the end of my tether. I walk with a limp and I can not sit comfortably in a chair unless my leg is raised. Is there anyone who can give me advice on pain therapy.
Hi Dorothy,
I had similar experience after my December 2016 TKR. I since had two manual manipulation and othroscopic surgeries, only to have the scar tissues come back again. I did metal allergy blood test which showed I am not allergic, even with severe case of hard tissues build up after all four surgeries. My advice is to re-evaluate the revision surgery and whether you will really not go through the same issue of scare tissue build up, there is no guarantee unless you do the metal allergy test first to make sure that your have allergy to a metal implant, and that a revision surgery will not just add more complications without solving the scar tissues build up problem. I also found out that using anti-inflammation cream Diclofinac Sodium cream helps a lot with the pain. My therapist is also using Graston technique and tools, which are helping a lot. Good luck.
I am wondering if you developed arthrofibrosis following knee arthroscopy or knee replacement.
My understanding is that the AF following knee replacement and arthroscopic knee surgery are somewhat different entities.
I was originally diagnosed with osteonecrosis which led me to having tkr. I am now worried in case more of my bone is dying, 2years later. I just do not know what to do for the best. I am on no medication as nothing works, I just have to suffer the pain. X-rays do not show anything wrong and I have never been offered an MRI. Does anyone have an opinion.
Alvin I experienced my first bout with af with just a scope and repair. I managed that no problem for years. directly after the total replacement hoever the af went turbo in my leg. nothing nor no one could keep up. as stated in other posts the af is up to my the middle of my quad. us 1% folks are pre-disposed.
I have had the same pain from day 1 of my TKR. Original consultant says I have Arthofibrosis. How can that be right from day one of my op. 2nd opinion Consultant doesn’t know why I am in pain and cannot bend my knee but did not mention Arthofibrosis. I do not know who to believe and am dreading having a revision in case I end up worse. I can not travel in a bus, train or plane as I can only keep my leg elevated without pain.
I live in Scotland and wish I had the money to go somewhere else for a true opinion
Yes, I have developed AF after TKR Aug 2017. I am having difficulty finding help in the Seattle area. I want to know which specialist will treat AF after TKR. I am 55 and want my life back! Please someone advise….
Hi Teri,
I am in Seattle as well, had AF after a December 2016 TKR surgery. I tried so many different techniques and medications, in addition to 3 manual manipulation and arthroscopic surgeries. Feel free to call me, I can provide details on my experience as I am doing tons of online research and working with two different surgeons and a pain management specialist in addition to a very experienced physical therapist.
Mona,
Is anything you are currently doing helping?
Thank you
Teri
Hi Mona
I had TKR 30 months ago with limited ROM after (<90 degrees), had MUA six months later during which the surgeon claimed they got to 115 degrees.
But the very next day was back to less than 90 so I strongly suspect Arthrofibrosis although no one will specifically diagnose it as such.
Intensive physio (I have a high pain threshold) did nothing and I am now wondering if this in fact aggravated the condition.
Belatedly I am now looking for other non surgical options, would enjoy discussing with you.
Chris
I live in the Seattle, WA area and do not see any surgeons in my area with a lot of experience. Does anyone have any personal knowledge of one? I am desperate for treatment. Thank you in advance.
Teri
I am wondering if you developed arthrofibrosis following knee arthroscopy or knee replacement.
Yes I did.
TKR
Hi Teri did you find any good specialists in the Seattle area for arthroscopic removal in the Seattle area from Mona or anyone? Manipulation under anesthetic isn’t an option for me.
Does anyone have any information about the use of “anakinra” for treating arthrofibrosis? I would appreciate hearing from you. Thanks.
Ann
Does anyone have any information about the use of “anakinra” for
treating arthrofibrosis? I would appreciate hearing from you. Thanks.
Ann
ok I just have to ask this question as simple as it may seem I need to understand at what level of fibrous you folks are dealing with? now to clarify my query a bit let me explain briefly were I am at with this vile disorder. then feel free to chime in.
the fibrosis in might right knee is thick and unyielding.
it is to the extent that it has pulled my knee cap downwards.
i can only bend my knee 20 degrees.
the fibrosis inside and thruought my quad muscle has migrated up past my turniquite line. this condition hurts more than my knee at any given moment. the quad muscle affected by the fibroius is as hard as steel and non elastic. when touched it feels like pressing on the bark of a tree.
so as stated i am just curious as to the extent of your fibrosis and the amount you are dealing with.
Hi,I might have a tad more range of motion than you, but your symptoms & mine seem quite similar.
Chronic pain, physically disabled, no quality of life. My first knee replacement was 6/2011( previous to that I had a bad surgeon/bad surgery 1981, then 3 scare tissue removals after that). Since my 6/2011, i’ve had 5 more surgeries. 2 revisions 3 open lysis or arthroscopic scar tissue removal, and the last in 6/17 open lysis and placement of patch containing amniotic fluid-good research being done with that, but my body decided to bleed from a small area not in the incision, and because of that I had to stop PT for awhile, which of course stopped my ability to ward off aggressive build up of scar tissue. I also had 3 MUA’s. I would/will do ANYTHING that could/would help my horrific condition. I hate being in constant pain, and worry about when I’m old (I’m 62 now, lst knee surgery 37 years ago) Except for the horrible doctor I was recommended to for my lst knee replacement, Ive gone to TOP QUALITY DOCTORS, local, nyc, and also spent 2 months in Chicago under Dr. Finn’s care. There doesn’t seem to be any answers for tough cases like mine. So upsetting and frustrating. I use to be active, sports, etc. worked out 3 – 4 times a week. Now between my knee and a severe back condition which is somewhat related to my knee, I can’t exercise at all. If you hear of ANYTHING that might help us, please let me know. (I go through surgery fine, I’m up and walking, (of course w/ some pain), but able to do PT, highly motivated, and a very conscientious/involved PT patient. Then at 2 WEEKS! , my body has developed that horrific scar tissue, and I can’t break through…..there has to be a cure!!!!
the only treatment that has been offered is to have the appliance remove and a mechanical or hinged knee put in its place. a radiation treatment may be applied to thwart off fresh scar tissue locally however the problem that remains is the fibrous that has turned my quad into a non elastic muscle will not flex and allow extension of the leg. that is the big picture.
Hi Mike, I have been dealing with atthrofibrosis for almost 5 months. I broke my patella in half with the top half lodged in my upper thigh (Quad) on September 1, 2017. I had surgery on September 7. I had a cast for almost 5 weeks, did not know at that time ithat I had AF. I worked hard from October 10th, with no progress. I could only bend 20 degrees or so. I had a manipulation on December 4th. I wish I had not done that, because the AF started growing with a vengeance. My body considered it ANOTHER trama. It was frozen straight I could not move it at all. I also felt my thigh had hardened it felt like a manikin. It was AF. Went back to my Dr. and realized from the manipulation that I had AF. So I went back in on December 14 and he removed so much scar tissue he literally had to pull it with his hands to get it from my thigh as he did not want to make the new incision up into my thigh as I would need to be in a cast again. So after that surgery I went home was put immediately in a CPM machine 24/7 I eat sleep and live in this machine. I have just purchased one. I have been renting one. I also iced and elevated my leg frequently. I went to physical therapy twice and realized it did more harm than good at that time. So my Dr. and I decided to back off and to start 800 mg. Ibuprofen daily. No physical therapy for 3 weeks and continue my CPM 24/7 stopping only to use the bathroom. I just went back Monday and I measured 65-70 degrees and on my CPM I am doing 82 as I type which translates to be the 65-70 degrees!! I was elated. I know I have long way to go , but I am hopeful that I can get past this unbelievably bad situation and get my life back!!!!! I hope to give you some hope as well and you are not using a CPM you need to. My leg would be frozen straight if I didn’t have it.
great news from you! I’m beyond the machine. I too fell and broke my knee cap 5 months after the replacement surgery I don’t have to tell you how much fun that was. came out of a 3 month cast at 0 deg. at about 20 today. as I type this the af in my knee has pulled my repaired cap downwards towards my tibia and it feels as if the shin bone has been hit with a hammer all day long. I have a pending visit to the u of m medical center as it will be my last ditch effort then maybe removal they can have the damn leg.
I’m in the same situation I have between 0-20 range of motion but my leg is always kept out straight as any movement causes me pain. I am in able to lift my leg as I have no control of my quads. I currently use a wheelchair everywhere other than my house. I also have a condition called complex regional pain syndrome which causes my knee to interpret everything as painful. I had patella Baja (a pulled knee cap) but I had a tibial shift last year to try help with that.
Lucinda what meds or treatment do you peruse for all that stuff?
Mercy to you.
mike
I also have a complex region pain syndrome so I’m taking medication for that as well as the arthrofibrosis. I have an interthecal pump that has clonidine and hydromorphone, I also take lyrica (for nerve pain), baclofen (for spasm) and femostin (hormone replacements). I also have palexia for when my pain gets really bad. I’ve had cortisone injections about 5 I’ve had 2 arthroscopies and a manipulation followed by the CPM but I couldn’t last even 2mins and only got to 20 degrees. I’m currently looking at a fusion to try and get out of the wheelchair and do more with my life.
Hi, I’m wondering how many people with AF are on disability insurance of some kind? I’ve been dealing with it for 10 years, trying to run restaurants for a few of those years, and it just gets harder and harder to do the things (stand, sit, bend, lift, etc.) that you need to do to work full time.
Thanks for your thoughts on this…
I had (L) total knee replacement Dec. 5, 2016. I finished PT and was doing great. I started feeling movement in the affected knee at that time, without pain. As the weeks went on, pain began, increasing in intensity quickly. Six months later (June 5, 2017) another surgery due to excruciating knee pain. My Orthopaedic Surgeon (Dr. Raymond Wolfe, Premier Orthopaedics, Glen Mills, PA Phone: 610-876-0347) performed another surgery and discovered a rare arthrofibrosis the size of a baseball between the patella and tib/fib. I am reaching out to this Foundation for help. Are you familiar with this rare condition?
Hello, Fellow Sufferers,
I would be grateful to hear from anyone who has any information about or experience with amniotic membrane treatment
for post TKR arthrofibrosis. This new procedure is being done at HSS in New York and maybe other places as well. Please let me know if you have any information. Thanks.
Ann H.
http://www.amniomedical.com/wp-content/uploads/Amniotic_Hip_Knee_Study.pdf
I do not believe it has been proven yet.
I had the amniotic patch surgery done last summer. I truly believed and hoped that was the answer. Unfortunately for me, my body destroyed my chance to see if the amniotic patch would work. My knee started to bleed out from a tiny spot that had nothing to do with the surgical incision. It didn’t stop bleeding for a long while, so the dr. had to tell me to stop PT. That was the end for me. I think you should try it! Dr. Mayman is an excellent, kind, compassionate dr. I hope to re -do the surgery again. Unfortunately I have to deal with a serious spinal disk problem lst. Good Luck to you. If you have any other questions pls. ask. I also went to Dr. Henry Finn in Chicago. Heard he was the best in the Arthrofibrosis field. Unfortunately I’m pretty sure I needed a MUA at 2 weeks but, Dr. Finn disagreed. Spent 2 months in Chicago, and returned home worse than when I left. My leg from upper thigh to ankle is now swollen, rather than just the knee area. I refuse to give up. So, if you hear of any new ideas, please share them!
Anyone familiar with Arthfibrosis specialists in New York?
Dr. David Mayman is wonderful!
Dear LL,
I see that you recommend Dr. Mayman at HSS very highly. I have been trying to get a consultation with him for quite a while but I understand he does not accept medicare anymore and it is illegal for him to accept out of pocket payment from someone who has medicare coverage. Would you be able to tell me on what terms you got to him? Were you part of the pilot study with some special arrangement? I would be grateful for any information. Thank you.
Dear LL,
I posted a reply to your recommendation of Dr. Mayman at HSS,but so far I did not hear from you regarding how you were able to get to him as he no longer accepts medicare. Perhaps you prefer communicating wit me privately via e-mail. My address is
heilbrun5@aol.com. Would very much appreciate hearing from you.
Thanks.
AnnHeilbrun
I developed arthrofibrosis after both my knee replacements. Felt like rubber bands closing around my knees. My flexibility went from 115° to 80° in my first replacement. Crippling horrendous pain especially at night. A scope was performed and it was manipulated back to a 115. No pain, no heat developing at night. Then did my 2nd knee replacement. Both knees and were now tightening and my mobility was lessening. Horrible chronic pain especially at night. Then someone recommended the Graston Technique. I go to a physical therapist that specializes in it. It has changed my life. I’ve gotten my mobility back, I can go up and down stairs normally, I have minimal pain and have my life back. If you have the same problem I highly recommend you look into this. It could change your life.
Hi Jean,
Thanks for sharing your story. I am going through similar situation where I developed fibrosis following TKR, it has been over 7 months since my surgery, I have bad pain sitting or standing, my ROM is very limited ( 15 – 75), I do messages constantly, went through many months of TP with no difference. I wanted to learn more about the Graston techniques you have mentioned. Is this for breaking the scar tissues, or just giving them more flexibility to improve ROM, is this technique painful,..etc. Appreciate more details please. I went through manual manipulation surgery, as well as Arthroscopic surgery, in both cases I feel better just for a few days, one week max, then the scare tissues start forming again, and limiting my mobility, so looking for any treatment that does not break the tissues, rather work on making tem more flexible.
Thanks in advance for yoru help.
I saw your question and apologize for taking so long. Graston technique absolutely changed my quality of life. I go to a PT that specializes in it. You need one that has the graston technique tools. I have also learned to do some things at home that help with it. Arthrofibrosis to me felt like rubber bands getting Tighter and Tighter around my knees. My Mobility lessened and lessened. Woke nightly with hot knees. Just kept getting worse. Graston technique at the beginning is painful but it is so uplifting when you get home and feel that your pain is starting to go away and your Mobility is returning. The process basically breaks up your fibrosis that hasn’t grown normally. The therapy feels like little rubber bands snapping inside sure leg. As it goes on the treatments are less painful. I truly looked forward to them because the next day I knew I’d feel better. Google it so you can see how it works with the utensils. Find a physical therapist that specializes in it and get started. Your life will change.
After years of doctors and unsuccessful surgeries and debilitating pain for a right knee contracture (frozen), I just recently was diagnosed with arthrofibrosis. My journey finally led me to Dr. Noyes in Cincinnati Ohio. What an incredible surgeon and authority in this specialty. Unfortunately, my situation is too severe for successful intervention to restore the back of my knee so I could straighten in. However, there is some possibility of an extensive surgery to possibly gain some flexion. The surgery would be opening up my entire front of the knee and removing the scar tissue that has completely encasulized my knee. It would be a long risky surgery with a 50/50 chance of working. I am joining the blog to get some feedback from anyone who has pursued surgery at this severe level. Thank you for listening.
I am turning 65 next month and have had four knee surgeries on my left knee over the course of seven years. The first, 2009, was to replace my left knee. The second, a year late, was an exploratory operation because my knee was sore and my surgeon said I have an infection. When I came our of the anesthesia he told he did not see anything and sewed me up. I under went a series of heavy antibiotics (delivered IV style). After that surgery the original surgeon passed away suddenly and I had no referral to anyone for two years. I was now required to use two canes to walk at this point.
Fortunately, a doctor friend referred to another surgeon. I saw him and he said that the infected prosthesis needed to be removed and a temporary spacer needs to be put in. Just before this surgery the infection was so bad it erupted through the skin and my doctor said that I might have to have my leg amputated. That did not happened.
I underwent the surgery with the prosthesis being removed and a spacer installed for one year. My left leg was placed in a brace and that is how I functioned for one year to make sure the infection was gone. I needed my wife’s aid to dress, bathe, go to the toilet, and could not drive or cook. I was now confined to using a walker.
One year later I underwent the fourth surgery to remove the spacer (which had cracked) and install a new prosthesis. When this was completed I was told there was much scar tissue due to the previous surgeries and that I would have limited motion but at least I still had my leg. Now the walker would have to be permanent. I now have minimal movement, severe pain if I try and flex my knee, a badly swollen thigh above the knee, numb spots on the knee, and it is impossible for me to stand with my left foot flat on the ground. After the surgery my heal was pulled up so that when I stand only the balls under the toes touch the ground. I have had to have orthopedic shoes made for me to try and walk.
One last item. Due to the fact the my gait was affected by use of canes so long I have had to have my left hip replaced. I am know able to drive, but need help throughout the day with common actions. If there is some way to minimize the arthrofibrosis and provide some flexibility I would jump at the chance. I have given up on a cure and only dream of my once normal life.
Have been dealing with severe scar tissue in ankle joint for two years now. Had one surgery for debridement of the sinus tarsi canal, which left me with even more scar tissue and in even worse condition then before. I have tried chiropractic care, myofascial massage, several rounds of PT and needleing….nothing has helped. Has anyone tried PRP treatments or stem cell treatments for arthrofibrosis? Does anyone know a physician in Atlanta area who deals with arthrofibrosis? Thanks!
[…] Practitioners | The Arthrofibrosis Foundation – Kua November 18, 2016 – 2:10 pm Reply. Have you tried Dr. Edwards Wojtys, he’s in Ann Harbor, mi. He’s one of the doctors listed as a arthrofibrosis specialist in … […]
i developed arthrofibrosis after surgery for an acl and meniscal tear. I had to have two surgeries, including a lateral release to make my knee somewhat functional. I also developed patella Alta due to the scar tissue pulling my knee cap lower. This was about 15 years ago. I’ve had pain in the joint ever since which I’ve dealt with by icing and nonprescription and prescription pain killers. Over the last few years, the pain has gotten really bad. I can no longer walk very far, and the muscles around my knee have atrophied. Weight bearing exercise on the leg is painful. My question is, would a person like me even be a candidate for knee replacement? I’m 50 years old, and used to be a very active person. I ran, practiced taekwondo (where I tore the acl) and liked to swim. I regularly weight trained to keep my muscles strong. I just doesn’t want a doctor operating on me if I’ll develop scar tissue again. My orthopedic surgeon says that it shouldn’t happen again, but I’m not too sure.
I am 49 and just had total knee replacements on both knees at the same time on May 9th, 2017. I now have the arthrofibrosis in my right knee and can not bend it but about 60 degrees. I have had manipulation under ansetisia done twice since the replacements, and still not better. My Ortho Surgeon informed me today he is leaving me be for 3 more months and then will see if I am any better. If not we will discuss my 2 options he says I have. One being, total replacement on right knee all over again and 2 being that I live the way I am at that time.
Hi, I just thought I’d share my story about arthrofibrosis. Mine developed in the knee following a riding accident, in which I had the terrible triad, torn acl, torn lateral meniscus (which healed on its own) partially torn lcl, and a dislocated kneecap. I developed stiffness immediately post injury but I suspect this was due to blood in the joint, I was placed in a knee immobilzer and had surgery for a internal derangement, after which surgeon told me I had a “severe injury” but had several small adhesions the beginning of arthrofibrosis) in the knee which were lysed and there my journey begins… This surgeon noted the acl was held together by just a couple of fibers and did not stitch the stumps together as is common practice. He then basically told me to go to the city for further treatment, he missed the patella dislocation, I found a “sports medicine” doctor who did 2 scopes but basically did nothing, and even lied to me about his findings, my knee had locked into a bent position, I did PT but nothing changed no matter how aggressive they were at PT the knee remained locked. I was young and naive but one day got the brain wave to check my medical records, the surgeon told me he could straighten my knee in the OR, the residents dictating the reports said differently, then this doctor recommended an acl reconstruction, something told me not to do it, why make a stiff knee stiffer, So I went to the library read every sports medicine book I could get my hands on, and learned as much as I could interesting in that no one ever mentioned the term arthrofibrosis to me. Through one of the sports medicine books I found a local doctor who diagnosed me in 5 minutes, planned a surgery, kept me in the hospital in a CPM, ordered very aggressive PT basically starting in the recovery room. He also discovered my kneecap was dislocated and fixed, he kept a super close eye on me and my progress, and we were able to get my knee back to a normal rom for my knee, one year after that surgery he did the acl reconstruction and removed a “huge” amount of scar tissue, and again very aggressive PT. This all happened in the early 1990’s and was a 3 year process with 5 surgeries that was depressing, frustrating, and at times had me questioning whether I was crazy. Fast forward to 2017, and I have pain in the knee again, went back to my doctor who just retired from surgery and discovered 2 meniscal tears, had surgery 6 wks ago, again had a ton of scar tissue but the graft is tight and fine, and again struggling with extension and flexion, PT I am currently seeing is not very aggressive. Doctor just wrote a note telling them to be aggressive. But, my knee help pretty well for 20+ years, Current surgeon is knowledgeable about arthrofibrosis, Basically my point of writing this is to offer hope, don’t take one doctors word at face value, research, read, find the best you can. I went through three years of hell, and had a pretty normal knee that got back to about 85-90% of what it had been. Had I listened to that second doctor who knows where I’d be. I’m sorry to read some of the stories here, but for those whose journey is just beginning fight hard! It is possible to get back to normal and even after my 6th surgery on that knee I have every intention of getting my knee back to where it should be (no pun inteneded). I wish you all the best, and hope for the best outcomes for you.
One other thing I want to say here–if I hear one more professional, doc or PT, or family member that tries to imply or out and out say that this was caused by my not doing something or not doing it “right” or “enough” I think I will throttle them on the spot. I have worked my a$$ off diligently for over a year on PT there and at home. I have undergone five (5) procedures in that year, one was the initial replacement, and fourth was the revision, which replaced that. Others were two Arthroscopies with MUA, and an MUA. Countless hours of PT, CPM,, Dynasplint for extension, Dynasplint for flexion, Game Ready Ice machine ($120/week, not covered). I’ve missed six months of work during this time, and the reduced hours will affect the pension I receive when I have to retire in 15 months (the earliest date I may do so). I’ve endured pain that made three childbirths (one with back labor) look like a walk in the park. I’m still struggling with it, but I work at it every single day. I want my life back.
So if you are a professional or family member, try not to victim blame or suggest things you have no idea or in case of family, any authority to suggest whatsoever. We’ve got enough to deal with, without having you imply or say straight out that we somehow caused this dreadful complication, as if anyone would. Just don’t. Be supportive. Rant over. And yes, that did make me feel better.
Amen to all that you said! My husband has been dealing with this since January, 2015. He has had knee replacement, two arthroscopies with MUAs, dynasplint, CPM, PT (both at facility and at home). He has been very diligent. Was forced back to work on a less than 100 bend and now just being told that he will probably never be medically cured and the State is giving him hard time to collect permanent disability. We are fortunate to have a doctor that does not blame him, but I know that not all are like that. This is a serious condition and needs attention. And, you are right, the rant does make you feel better. Good luck.
Is there a chance to claim permanent disability? I ‘ve had 10 knee surgeries since 1981…5 since 2011. I had to be out of work 7 months in 2015. Since then I’m back to work, although had to change my position. However everyday it is difficult for me to get through the day at work. I’m a teacher. Sitting, standing, walking, lying down, are all painful. I keep trying surgery. In addition, PT, acupuncture, Calmare, Graston,Cryotherapy, massage, etc. etc. I’m in as much pain at home as at work. Emotionally it helps to go to work, but some days it’s so difficult to get there. Once I’m there I try not to think about my horrible pain, and permanent disability condition. But once I leave work all my limitations continue. There is another therapy that is the same at Graston. I ‘ve forgotten the name. I went through months of that treatment. Had zero improvement. Went to another PT, he did one session of Graston, and my knee got worse. Felt really bad, and look like I had an infection. Went to emergency room. No infection. Just the Arthrofibrosis issue flaring up from the agreessive Graston tool. Any suggestions accepted. Thx!
I have the same problem with people who think they have the solution to get my leg to bend.some saying doing too much while others say not enough.BS,I have been dealing with stiff leg for 11 years still will not bend.I went through numerous procedures and seen different doctors.The main answer from the doctors is nothing can be done. So I hope someday something can be done but as of now nothing.In the end i had two hip replacements and several surgeries and procedures done but no luck yet with arthrofibrosis on right knee.So move on and hopefully some day we have a solution.I was 46 years old when it began!!
Go see Dr. Henry Finn in Chicago. I just got back. I had 0 degrees of flexion in my right leg and have arthrofibrosis. It too hadn’t bent in 12 years. But, with Dr. Finn’s expertise, I now can bend it just shy of 70 degrees. An extremely complicated surgery and lots of PT, but my quality of life is slowly coming back. We stayed in Chicago for 8 weeks so I could have PT every day. I am now back home in Washington undergoing another 8 weeks of PT. It will be worth in the end. A lot of hard work, but so worth it. He radiates the knee prior to surgery to prevent the cells from growing adhesions so fast. I couldn’t find another surgeon that would work on me.
Everyone is different. He was able to help me, but you will need to consult with him to see if he can help you too. He sees people from all over the world. He is extremely knowledgeable and so efficient. Check into it. He works out of Weiss Memorial Hospital in Chicago.
Good Luck! Deanna Baird-Scott
Tricia
I couldn’t have said it better myself. After six surgeries in six months four of which have been huge open procedures, I’m left with huge amounts of pain due to the arthrofibrosis and a very minimal range of motion even after the most recent surgery included a major cutting into my quad muscles to gain A little extra movement. I believe my surgeon is a great surgeon or I wouldn’t have allowed him to do all of the surgeries but I know there are many people out there that question how hard we have worked and how much pain we are in and have no idea and no right to question that if they haven’t experienced this condition firsthand. I have had shoulder surgeries in the past and part of my lung removed which required cutting through all of my ribs etc. and I consider myself to have a pretty good pain tolerance so therefore when I say this is off the charts at times, I absolutely mean it and expect my surgeon and other professionals etc. to understand and believe me. When you feel like that doesn’t occur at times, that Just adds insult to injury and it’s so difficult to even take one day at a time with this condition when you are only 48 years old, great condition, have always stayed in shape and did everything and anything they asked for the surgeries including hundreds and hundreds of hours of physical therapy, done exercises on a regular basis, CPM machine etc. I spent two weeks out of the last month in the hospital and several weeks altogether but have never ever refused to do anything they’ve asked or required and quite the opposite have worked my butt off to get better and will continue to do so but it’s so difficult just to keep from being depressed etc. in addition to having this horrible disease and incredible pain. I can’t even get clear-cut answers out of my doctor as to what the future holds or next step is except I really believe I need a much better degree of pain management as it’s almost intolerable at times even with the medication they provide. I just don’t believe that the nurses or maybe even the surgeon themselves realize how painful arthrofibrosis and all of these things are since they say I’m the most difficult patient they’ve ever had and don’t deal with Arthur fibrosis very often. I even hear these things from physical therapy etc. from physical therapist that I’ve been doing the job 25 years that don’t even know what this disease is all about. Some of them have never even heard of that yet they believe that you should be able to push your knee past thos I even hear these things from physical therapy etc. from physical therapist that I’ve been doing the job 25 years that don’t even know what this disease is all about. Some of them have never even heard of that yet they believe that you should be able to do all of the exercises and improved range of motion greatly. It’s almost incredible to me to think that those people wouldn’t know anything about this horrible condition. I think they are so used to normal surgeries that they can’t wrap their brain around the fact that this could be so painful. I limp when I walk now, I compensate with my other knee that is starting to bother me, my lower back hurts as well, and I think it’s only going to get worse. It scares the crap out of me to think that my right knee may need work or that my back is going to be affected etc. You mentioned missing work and I have missed the last month and probably a few months out of the last six months. I’m very fortunate to have a job that I’m in the office the majority of the time so that I can do my work from home by email etc. but that won’t last forever obviously. I also feel like my surgeon is probably ready to ditch me at a certain time as I’ve already seen the attitude in the office surrounding him and the people that really make the decisions about writing pain medication etc. changing gradually. Even though I’ve spent tens of thousands of dollars on these surgeries and do everything that’s asked, it just feels as though I am becoming that problem patient that they could do without and that is the worst feeling in the world as most of you know the deal with this condition. I believe first and foremost in order to keep from being totally depressed and keep some optimistic thoughts, you have to have a surgeon and their team that are totally on your side and believing you do you have incredible amounts of pain and if they aren’t the ones that can assist you in reducing that pain, then they need to send you some place that specializes in it for pain management. I can’t seem to get that through to them and I’m scared to death that I will just be cast away eventually here once there are no more surgeries on the horizon. I don’t know how to describe it but I know most of the readers on here will understand that first and foremost we want our surgeons and other doctors and nurses to absolutely believe us when we say we are in pain that is the most unbelievable unbearable that we have ever experienced in our lives and need their support and assistance probably more than we even need medications. This is the biggest challenge of my life for sure. We all know it’s a living hell. I apologize for the long rant as well but the last thing we need is for others to question our dedication and commitment to working for just a little less pain, better motion, and a little relief from this hell.
I’ve read so many stories on here of people in such incredible pain like I am and I just want to say that I wish you all the best and hope that your pain and situations get better with time. I really really pray to God that there are more advancements in this area in the future to help not only us but others that will experience the same nightmare. Others have always said and I agree, that I am one of the most optimistic positive people yet I struggle daily to maintain any optimism that this will get better yet I know I have to keep working hard to try to get another degree of motion and heal. I can’t imagine living in this kind of pain forever and you have to struggle to keep your mind from going to some very dark places. I’m sure anyone that has this condition can relate to exactly what I’m saying. Once again I apologize for the length of this but felt like it was somewhat therapeutic to even respond because you’re post was exactly what I was thinking today and just felt like I needed to agree with you.
I’m going to continue on one day at a time and try to improve the situation but at times I really wonder how it will all turn out or how I’m going to manage the pain and all that goes with it for the rest of my life. It’s so difficult to even go day today, hour to hour, minute to minute so it’s very difficult to understand how that will all work out but I pray to God it does as this is just the worst nightmare of my life as it is for many on here.
I wish you all the best as I do everyone else and hope your pain gets better and injury improves. God bless and I appreciate your post as I do everyone else’s!
Cameron no one and I mean no one besides the souls that have to deal with this can grasp the diverse dimensions we visit. from pain to depression to the nightmare that it is. you have captured everything that is wrong and then the deer in the head lights stare we receive when we try to explain it. I am off the meds so that I can concentrate at work and of course I am functioning at a level of pain that is incredible. No boo hoo’s I just gotta make it thru life I am 57, kid in college, retirement? After two years the mind game that plays out just to manage the day…wow you get it. This brings no comfort but you are not alone. .
Mike
First, thank you because when I wrote that I WAS SO UPSET, hurting, frustrated, scared, mad, and every other adjective to describe this horrible nightmare that ONLY you guys would and will understand ( so basically what I’m feeling right now as well LOL ) and that I still feel today BUT am trying to manage a little better than I did that night I wrote my original post!!! Hahha.
If it weren’t so painful and crazy it’s almost not beleiveable and since I’ve always been such positive person, I can almost even make it laughable since my post was borderline CRAZY that night and I even thought “oh my gosh I shouldn’t have written this and how do I get it deleted?!” Haha. So thanks for at least understanding my and OUR frustration as it’s like therapy and we all know dealing with this disease and situations it’s managing the depression, darkness, and all of the really horrible times even more than it is trying to figure out the mechanical dysfunction of the knee! I’m just so glad I have an outlet to express it where my “friends” understand it. I’m so thankful for this site and all of you!! I have learned so much from others and continue to hope!
I did want to update and share with others the fact that I haven’t really lost any more motion and I’m so excited that I am actually going to see Dr. LaPrade at Steadman Hawkins clinic in Vail Colorado In two weeks and I think he’s one of the best surgeons in the country for this particular disease. I feel very fortunate that I was able to get in to see him. I am knowledgeable enough about this disease now that I don’t believe he can probably do anything to help the situation but at least I will have some closure and maybe a plan to keep the other knee, my hips, lower back etc. and good enough shape to avoid any procedures with them. As we all know, the knee starts to affect the rest of the body quickly!! So my best advice is to be proactive in those areas with chiropractic care, massage therapy, physical therapy, and just plain hard work on her own in order to avoid any other issues. The pain that sometimes is almost unbearable as well so you need to find a really good solid pain management doctor that understands and believes you! I think the key is on the part of believes you.
In addition to going to get to see the new orthopedic surgeon, I also located a fabulous pain management doctor that really seems to believe and understand the mechanical issues of the knee that cause pain. He is actually the first one that I actually looked at my knee. He diagnosed it with chronic regional pain syndrome as well so I think many of you probably have that in addition to arthrofibrosis. He is it least actually trying to find ways to better manage the pain without just medication. We tried the new DRG implant for a week but I didn’t feel like it was providing enough relief to have it permanently implanted yet. But, it may provide relief to many others in the future. We have tried the common nerve blocks and injections but obviously the mechanical parts and problems cause many nerve and pain issues. Tuesday we are trying some ketamine infusion and I know it probably won’t help much for the pain but the research shows it may help with mood, depression, other things that the pain obviously contributes to. It’s very expensive but if I provide some relief or even placebo effect, I’m going to try. Anyway, it’s at least nice to see that a doctor believes me/us and then actually feels like a partner in the process to reduce the pain. Anyway, I apologize for the rambling but I appreciate your response and I’m glad to see that it wasn’t way too much as I cringed once I sent and reread it! Hahah. This nightmare sometimes causes those types of reactions I guess.
Best of luck to all of you and thanks again mike!! I’ll keep you guys posted on my journey and look forward to reading about some more successes on here!!
Mike,
I forgot to and must reiterate what Rick said that I CANT believe you do this without meds!!! Kudos to you my friend as I’ve tried and done it at times BUT I can’t imagine doing it totally without for long term BUT I think it further reinforces how strong people are that deal with this disease! That point alone and this website totally motivate me to continue every minute, hour, and day when sometimes it just feels like you can’t go on any further. It’s like, what’s the other option? There is no option other than to move forward right? My flexion doesn’t seem to be losing much thank goodness but my extension is getting tougher and tougher to maintain so I feel for you as well! I remember my Surgeon saying to me that I had to maintain the extension and I always thought the flexion was the most important but I know they are both important but I just really remembered him emphasizing extension. Anyway, I just wanted to applaud you once again on the fact that you do this without medication! Keep fighting and try to stay positive as I am hopeful that there will be more advancements in the way of pain management or at least understanding etc. for this disease in order to find some answers in the future!!! They have to do more research and education in this area!! Stay strong and god bless!
Cameron, you nailed it! Everything!! This is the toughest thing I’ve had to deal with in my life and I’ve been dealing with AF after a TKR for 10 years. I’ve had multiple surgeries to take out the scar tissue (open and scope) and MUA’s, but it just comes back even worse than before. I’ll be 50 very soon and I really don’t know what to do anymore. I guess all we can do is live one day at a time, like you said, but those days are getting tougher!!
Mike, I don’t know how you do it with no meds. That would make it even tougher for sure!! I feel for you!!
Hang in there everybody!! We’re a small group, but we’re a strong group!!!
Rick
Rick
Thank you for the nice comments as I responded to Mike and told him that I was afraid to come back and read any responses to my ranting that night! LOL. I’m just glad to know that many others understand that level of pain, frustration, etc. A lot of times you feel alone and to be able to turn to this website and know that you aren’t is very comforting in and of itself and HELPS me stay positive to work hard in order to protect my hips, good knee, and rest of the body that suffers because of this one badly.
Like I told Mike, just being able to have an appointment with a premier Surgeon out at Steadman Hawkins in two weeks and having a pain management doctor that is on board and a partner, helps so much! When you feel like you are proactive in this it does help to some degree at least for me. You still have the day-to-day struggles but at least something to work toward.
Anyway, like you, I couldn’t believe that someone can do it without medication! That is so strong. I know the struggles of medication and it’s side The facts versus dealing with the pain bite self and they’re both problematic. Anyway kudos to him and others that can do that but at this point I’m just not one of them LOL!
Once again good luck and stay strong to you and all the others that suffer from this disease! I’ll keep you posted on my situation and I hope you and others get some relief in the future. 🙂
It is becoming harder to ignore the pain. As my body reacts to the inefficiencies of the damaged leg other areas become inflamed. My hips for instance the right socket is telling me the gait is off don’t do that. my left foot underneath has become bunched up were the toes start as if I am walking on a big stone. Walking still doing that. I am an engineer by trade. I average 4,000 to 6,000 steps a day on concrete at work 5 days a week. Each one accounted for each one anticipated. I fell October 3 my foot only clears the ground by a few inches as I walk. Got it caught on something on my face I went. I have to push thru it my family depends on me. If only the scar tissue had not invaded my thigh. Move forward never go back…mike
Thanks for all the supportive responses. Cameron, you really nailed it. Luckily for me, after the first 3 procedures, when I had a hooked leg with terrible lack of flexion, I researched and found Dr. David Mayman at Hospital for Special Surgery. Also, he recommended, and I highly agree–with going to Hospital for Special Surgery for the PT in such a case. These people are top-notch, and mostly deal with difficult cases like ours. They have much more in their bag of tricks than the standard ROM exercises. They work as a team with Dr. Mayman, and even though I am still struggling against the scar tissue, no one is giving up on my. My team is there, by phone, email and in person. I am no longer in the excruciating pain I was experiencing last year this time. Since the replacement was replaced, I am dealing with stiffness, tightness and swelling, but nothing like the constant and overwhelming pain.
I also have had water therapy, and once I had that–I joined my local YMCA and go 3-4 times per week and do a series of exercises in the water 10 reps of each. It helps a great deal.
I refuse to give up. Dr. Mayman’s PA told me I am already a success story based on the condition I came to them in, and I know it’s true. My kids were so amazed that right after surgery I could stand up straight and walk that they were snapchatting little videos of me doing it!
There is hope. Never give up. Don’t accept lackluster or wishy washy PT. You NEED someone who really knows about arthrofibrosis.
Thank you Patricia! Like I told Rick and Mike, I cringed at even coming back to read responses to my ranting at night but I’m glad you guys didn’t totally think it was crazy. LOL.
This website provides a great outlet for learning, sharing, and what I consider some of the best basic therapy from others that have experienced this nightmare firsthand!!
I am excited to go see Dr. LaPrade at Steadman Hawkins if for nothing else, maybe some closure or a plan for the future. Also like I said to Rick and Mike I found a good caring and understanding pay management doctor that is working with me to explore other options as we all know as a group they are very slim especially with the chronic regional pain syndrome as well. I tried the new DRG stimulation where they temporarily implant electrodes in your back and use gentle Stimulation of that nerve canal at L2 and L3 in the vertebrae just like they do nerve blocks but it didn’t seem to be that effective for my pain. Hopefully that’s the new future for others though. Tomorrow I am going to try ketamine infusion in a series of six to see if that will help with the pain but research has shown that it is at least hopefully effective with mood, depression, etc.
I will keep you guys posted on my journey as we all know it is a long and arduous and please let me know how you guys are doing as well. 🙂
I have had two total knee replacements on my right knee, four manipulations and over six months of physical therapy and to this date, I have 0 degrees of flexion from arthrofibrosis. I am currently in Chicago preparing to have surgery on April 11, 2017 by Dr. Henry Finn. He designed a prosthetic called the Finn Knee that he will be using to replace my current prosthetic. What is different-I will undergo radiation treatment to help prevent scar tissue from growing so prolificly in order for me to actually make headway in Physical Therapy and the success rate of this particular prosthetic. Read the following article:
Does anyone have a Flexinator that they are no longer using? I would like to buy it from you ASAP. Please let me know at dbairdscott@gmail.com.
1) Finn Knee System Recognized as Notable Orthopedic Innovation
Published on November 24, 2008
The Finn Knee System, an orthopedic prosthesis that debuted in 1991 for limb salvage and difficult knee surgeries, was recently acknowledged by the American Academy of Orthopaedic Surgeons (AAOS), Rosemont, Ill, as one of the more notable orthopedic innovations of the 1990s.
Henry Finn, MD, chief of orthopedic surgery at Weiss Memorial Hospital, Chicago, medical director of the University of Chicago Bone and Joint Replacement Center at Weiss, and professor of surgery at University of Chicago, designed the implant.
The system is highlighted in the October issue of AAOS Now, which chronicles orthopedic achievement in the 1990s—a decade marked by rapidly advancing technology. The record is part of the AAOS’ 75th Anniversary Celebration, which looks at more than 1,500 events in the 75-year history of orthopedics.
According to the maker of the implant, Biomet Inc, more than 12,000 patients in the United States have benefited from the System and what it evolved into in 2000—the OSS Orthopaedic Salvage System featuring the Finn Knee, a complete salvage revision/oncology limb-reconstructive system.
Finn says it treats people with extensive bone and ligament damage as a result of deformity, trauma, revision, infection, or cancer, which conventional knee replacement would not be able to accomplish.
The Finn Knee was also recognized as one of the most significant advancements in the field of orthopedics in the last century in the millennium edition of Orthopedics Today (January 2000).
Finn has helped invent other orthopedic prostheses: the Balance Hip, a cementless hip replacement that enables patients immediate weight-bearing on the hip; the Vanguard SSK Knee, a super-stabilized knee used in complicated and revisional knee surgeries; the Balance Microplasty Hip, used in minimally invasive surgery; and the OSS Salvage Cage, used for revisions in cases of catastrophic failure of hip-replacement sockets..
Deanna,
I hope your surgery goes well today and you have excellent results! I’d be interested in hearing how the radiation therapy goes, as my doc says I would be a perfect candidate for it.
Best wishes,
Julie Muniz
Waller, TX
Has anyone ever tried a spinal cord stimulator for pain relief?
These knee surgeons have turned out to be cold blooded gangsters. It is not good to keep cutting the human body
Theresa
I just tried the DRG (. Dorsal Root ganglia) stimulator that Saint Jude’s provides to the pain management doctor to implant. I did the trial period of one week just a couple weeks ago with the temporary implant. So what they did was they went in like they would with an epidural injection with a hollow tube needle and inserted two leads in your back. One of the leads goes to the L3 that covers the knee and the L2 that it’s just above the knee. You then control the power and stimulation with a handheld transmitter or you can turn it up or down. You try that for three days to seven days and if you see over 50% reduction in pain then you can elect to have it permanently implanted with a small battery and the wires completely encapsulated in your body. You then control it with the same transmitter. They said they were making the batteries and transponder smaller but right now they were still a little larger than what I like. I also began to notice some lower back sciatica pain. I believe the gentle stimulation was overstimulating or exacerbating the muscles above that in my sciatic area and those nerves as well. The sales person now with St. Jude’s were very persistent and I Felt a little pressured and that the risks outweighed the particular rewards at the time for me to have it permanently implanted so I elected to have it removed and my lower back pain went away. They said they could adjust that and I’m sure when it was permanently done it would’ve been better. I did some research on it and was just not quite confident that it was exactly what I needed or wanted at this time until I see the knee surgeon in Colorado. However, I also have chronic regional pain syndrome in my knee that probably contributes to more knee pain and complexity so others may actually benefit more from this procedure than what I did. I just think it’s still very new and wanted to see if the knee surgeon before I committed to anything. It sounds like from the research though the DRG stimulator is much better than prior stimulators in the past or at least the studies have indicated some of those things.
Anyway, I hope this helps you with your research and your decision. My pain management doctor and anesthesiologist was wonderful about removing it and completely understood! He’s going to continue to seek out other treatments that will assist in reducing the pain so I hope you get there as well but having a great pain management doctor will really aid in the process. Good luck!!
Has anyone ever tried a spinal cord stimulator for pain relief?
Where are Deanna? Hope all is going your way. Please reply we need to know.
Michael.
I have had three scopes and two knee replacements on my right knee. First a partial, then a TKR. Unfortunately, I have been diagnosed with AF and have had the scarring cut out twice over the last year and a half. This might sound like a very stupid question but here goes. My left knee recently had a scope done on it after I contracted a major infection in the knee capsule, after getting a cortisone shot in that knee. Emergency surgery was performed the night it was discovered and the knee was found to be pretty badly worn out and seems the only answer would be to have another TKR, in my left knee. Is it an automatic that I will get AF in that knee, too? Does anyone know or have gone thru this. Right at the moment I can only climb stairs using my left leg to climb and then pull the right leg up to the same step. Same going down. At least I have a bit of strength in my left leg but don’t have the strength needed for very much in my right and if the AF comes in my left knee I would be useless. Wondering whether I should just grin and bear the tremendous pain in my left knee or chance a TKR where I’ll probably have no strength and tremendous pain to boot. Plus the possibility of being nearly a total cripple. Ain’t AF great!!
my vote if and when my left knee were causing me issues would be to grin and bear it. I can not imagine going thru on the left what I an currently and always will on my right. they are only guessing to say otherwise. read my story here I am currently down to 30 deg extension. I hate how I feel.
Mike Stanton
I had TKR on my left knee Dec 2013 and have had arthrofibrosis ever since. 1st manipulation under anesthesia was performed without improvement. The post open pain from the MUA was incredibly bad. Since then I have had 2 additional surgeries to remove the scar tissue, the most recent Dec 2015, followed by aggressive physical therapy each time but each time the AF returned worse than before. However, I had TKR on my right knee September 2014 with decent success and virtually no AF. My physical therapist said she had seen that, 1 knee bad 1 knee good, many times before. This is just my story. If I had to do it again I would have done more to avoid surgery at all. I am in constant pain from the AF and unable to walk or stand except for brief periods of time. I’ve read about promising work with stem cells to avoid surgery. I would recommend trying anything except surgery.
I recently had bothe my knees replaced at the same time. I only ended up with AF in one of them. The other knee is doing great.
worst thing in the world, I”VE been dealing with this nightmare for OVER SIX YEARS and NO RELIEF in sight.three manipulations,two scopes and one two hour cleanup surgery.this was done in HSS WHICH IS ONE OF BEST HOSPITALS AROUND.Even drove 11 hours to CINCINNATI to see WORLD RENOWNED DR. NOISE and he would not touch my KNEE. DON”T DO IT
I believe as someone also with AF that you will get it in the other knee too. I am currently recuperating after my 4th surgeryto try and fix this with a left tkr, but even after vigorous physio the barstard is back again! Sorry about the bad word but I feel better swearing about the damn thing. There must be something or someone with an answer for af sufferers cos itsa hideous condition.
I would like to share my experience with arthrofibrosis. Reconstruction surgery in 1978 due to a large osteochondritris desiccant defect of the lateral femoral condyle. Back yard football was the culprit. Knee grew worst over the years. On March 3, 2014 TKR. Three weeks later my ROM was 65 flexion and 5 extension. Three weeks later my knee became stiffer with 60 flexion and 20 extension. A manipulation was performed with full extensions and flexion being obtained. Two weeks after manipulation my ROM was 85 flexion and 20 extension. All this time I have been to physical therapy five days a week. Knee is swelling with plenty of pain. Knee arthroplasty, open capsular release/adhesions and a poly exchange on May 20, 2014 with 3 extension and 125 flexion. Started back physical therapy. Two weeks later, 7 degrees extension and 110 flexion. Two weeks later; 3 of extension and 96 flexion. Went back to work in July using a cane. Walking was painful. My September checkup indicated my ROM was 8-12 extension and 90-95 flexion. By October 2014, I have been to 107 physical therapy visits and have taken 120 prednisone pills. My last visit to the Andrews Sports Medicine and Orthopaedic Center was in January 2015 indicated a ROM of 10 extension and 85 flexion. I became sick and tired of walking with a limp. I called several orthopedic clinics throughout the south trying to find a surgeon with scar tissue experience with no avail. In August 2016, My wife found this website. She read about this disease and cried. I called the Hughston Clinic in Columbus, Georgia and asked for the director of surgery. The administrative clerk said that their was no such director, so I told her my story and that I’m begging for help to walk. She said she would go ask the doctors. She did and called me back saying that I was in luck because the doctors said to see the doctor that fixed Humpty Dumpty. I said thats great, but who is he? She said Dr. Fred Flandry. Two weeks later we went to see him. I asked him if he could help me and he said he could and that it would require severe physical therapy. I was mentally prepared. On the way home, my wife was distraught because she didn’t want to see me in another six months of pain. A few weeks later she went back to this website and found that Dr. Fred Flandry was listed. She began to cry tears of joy. I also joined in. January 4, 2016 I underwent another scar tissue removal, open knee 41 stitches! Forty-three physical therapy visits and ninety at-home self exercising with an hour each morning and two hours every evening, my knee was much much better! I ended up with a 8 extension and 115 flexion. Summary: After two scar tissue full open knee surgeries, 150 physical therapy visits and 90 two-a-day home exercises, I still have to do my exercises three times a week for 30 minutes each to keep my back from hurting. I hope this encourages you. 10/9/2016.
short version…total right knee replacement july 2015. did not work out to well. back to hospital within the first week home. mau then sent to rehabilitation center. entered there with 25 degs. bend. left with 30.
another surgery in august to repair and replace parts. back to hospital after the second day home for removal of a large hematoma in thigh. another mau in august. came out at 90 degs. regressed to 30. leg is becoming harder to bend and the pain throughout thigh and knee are unbearable. fired surgeon in September. new surgeon in October. upon looking at my x-rays determines my femur was notched almost one inch above the appliance. states will have to replace the original parts and place a device up into my femur to bridge the open gap. states it is a fracture point. due to the amount of activity in the past several months tells me to come back in January 2016 to allow things to settle down. at this point he also is concerned with the amount of AF that is starting to take over my thigh up to and including the tourniquet line. the AF is not only on the surface it has infused inside the muscle. extremely painful ordeal. Christmas eve I fell due to my inability to walk without crutches and heard an audible crack.
pain scale now at 10 passed out. was taken to emergency room they found that my patella had cracked in half. surgery January 4th 2016 full cast to groin for three months. after the removal of the cast 0 deg bend. AF has turned my thigh to steel. more pt after several months able to reach 30 degs. nobody has an answer how to fix me. went to Chicago to discuss with Dr. Henry Finn. he suggests replacing the appliance with a hinged knee of his design. however nothing can be done with the amount of AF in my leg. passed on the replacement. as of today I am stuck at 30 degs. the AF in my thigh fells like a charlie horse and if you remember as kids someone giving you a snake bite on your wrist, well mix those two sensations together at a pain scale of about 4 to 5 24/7 that’s me. I have learned a great deal about pain and suffering and the helplessness this disease brings forth. no one knows what to do with me. at 57 its a life changer. no one understands. they see me if you will “walking” and think all is well. considering having the leg removed. I could not make this story up nor would I. if you are experiencing less than me be grateful. I feel compassion for anyone who has more. just thought you should know. mike
Michael: I sympathize with you and I am sorry. Read about my experience “Deanna Baird-Scott” below. In short, I too have 0 degrees of flexion in my right knee after two TKR’s and more physical therapy sessions than any one person can fathom. I live in excruciating pain 24/7’s. The contorted way of getting up as you know does havoc to your hips and back. So, we not only have severe pain daily, but I and I can imagine you too have bursitus in our hips due to having a chronic lump, arthritis in my back and I have fallen more times than I can count. That is only the tip of the iceberg of problems encountered when we have no flexion.
I wanted to tell you to maybe re-consider your decision about having a new knee put in. I too went to Chicago to consult with Dr. Finn. I am having surgery in April to totally replace the prosthetic with his designed prosthetic. He has ordered radiation pre and post surgery to help prevent the rapid growth of adhesions and aggressive physical therapy for approximately 8 weeks. Will most likely have to have more PT when I return to Washington state. I just refuse at the age of 58 to give up the chance of a quality life again. Of course, maybe there are some specifics that I am not aware of that makes us unique in our circumstances so the outcomes may be different causing you to think you have no further path forward. If that is the case, I am truly sorry.
It is March 27, 2017, almost March 28th and I am meeting with the radiation oncologist tomorrow for my radiation markings prior to my lysis and TKR of my right knee by Dr. Henry Finn. My surgery is scheduled for April 11th. As I have mentioned in past posts, I have no flexion at all in my right knee and have suffered with chronic severe pain for ten years. I am sure hoping this will do the trick or I live with this the rest of my life. I am 59 years old. So please keep me in your thoughts. Hope you are all finding solutions to your arthrofibrosis as well. Sincerely, Deanna Baird-Scott
This will be my third TKR on the right knee. Not looking forward to the process having fibromyalgia as well.
Deanna,
Please keep me/us posted after your april surgery. You are probably the only person that understands what I go thru every day. I will be thinking of you and your struggles. Michael
Hi Michael,
I just found this site yesterday…and even though I am reading horror stories about your circumstances, it does make me feel better knowing there are others out there like me. I haven’t met anyone who has had the issues I have had with my replacement/scar tissue, so I feel like I’ve come to the right place now…with people who truly understand the struggle. I had my replacement 2 1/2 years ago and have had nothing but trouble…like you…a complete life changer. I’ve had an MUA at 9 weeks post op, and a scope to remove scar tissue at 16 months post op, 17 months of PT and I’m worse now that I was at the beginning. Constant pain, swelling, cramping, little sleep, not able to do many of the things I could do before…I’m only 57, but sometimes feel much older and I do worry what the future holds if I’m already in this shape at this young age. Will I even be able to walk at all when I’m older?? Anyway, I just wanted to say hello to a fellow replacement club member and I hope you can find an answer to your knee issues! If you do…please let me know what it is!! Hang in there!!
Julie Muniz
Waller, TX
Julie,
I don’t visit here often so welcome to the club! There are others like you and others that wish they were you. Some one is often not as lucky to be like me and suffers beyond it.
Cant imagine. At 57 I have lost almost all activities I have had the pleasure of doing all my life. Sadly in the quite moments of the night this nightmare haunts me and sorrow sets in.
I wish Deanna would chime back in so I could understand her ordeal as of late.
In her own time perhaps I am not running any where soon….lol
Michael
Hi Everyone,
I am a 19 year old girl and I tore my ACL almost two years ago, I have had five surgeries on my knee and a treatment of radiation. I have arthrofibrosis and I can’t bend my leg past 85 degrees. I am also at a negative 10 degrees in extension. I live in Michigan but I am willing to travel anywhere to try and find a surgeon who can help me. My surgeon is extremely experienced and did a great job with my repair but has never seen a patient with arthrofibrosis and he has no idea what else to do. I can’t stand living like this anymore. I use to be a very active athlete and now I can’t run or do any of the things I used to do anymore. I am in constant pain and I wake up every morning not knowing if I will be able to get out of bed because of how bad my hips hurt. The way I walk has already put a huge toll on them. I am really hoping to find some answers. Please help me if you can. Thank you.
I’m so sorry to hear. I live in California and travel to see Dr. Colin Eakin in Palo Alto. When I first saw him, I was at kind of in the same situation as you. The surgeries and no help. I went to physical therapy 3 x a week and that didn’t help as well. After my first initial surgery with him. I had 125 ROM.
Have you tried Dr. Edwards Wojtys, he’s in Ann Harbor, mi. He’s one of the doctors listed as a arthrofibrosis specialist in knee guru.
Hi, My name is Jack. I currently live in Chicago and I’ve had 7 surgeries in the last year and a half. I tore my acl playing basketball and used my hamstring to repair it. My range of motion is as follows, Extension 15 degrees and flexion 70 degrees. I’ve had two well recognized surgeons, however I was told recently that my Surgeon has never seen a knee like mines. And he is afraid that I will never be normal again. My scar tissue is excessive and is growing at an alarming rate. Its hard for me to live and I was forced to quit my former job and had to settle for a new one to make ends meet. My goal is to walk normal and possibly run again. Is there anyone with suggestions that could help me progress. I’ve had a CPM, a Game ready machine, therapy 3x a week, but nothing has helped me improve. Before I hurt myself I was running 20 miles a week and squatting 405, now I’m afraid that is all history
My daughter had arthroscopic surgery in 2007 to cut the Plica band that was causing knee pain. She was told it was a simple procedure and she would be back to work in a few weeks ( PNP). After a few week post op…she was not able to straighten her leg enough to put her heel on the ground. She was walking on the ball of her foot. PT was not able to do anything and she was in a great deal of pain when they tried to straighten her leg.
A second option was sought and the doctor confirmed that there was no way her doctor could get her leg straight as she was already suffering from a shrinking patellar tendon. He told us that she would need open knee surgery and that with the fibrosis we would only have one chance to get her leg back. He said most likely her contracture would be permanent.
We had the open knee surgery with the original doctor, and things were good at first …..but then the wound dehisted and infection set in….the doctor seemed to think my daughter was responsible for this.
We sought help at HSS in New York…. 2 doctors trying to straighten her leg were only able to straighten it under anesthesia , but unable to maintain extension and flexion enough to walk heel toe.
Braces and partial knee replacement and a patellar tendon extended with cadaver tendon, have not been able to keep the fibrosis at bay.
I believe now, almost 10 years later that the Achilles’ tendon has shrunk enough to prevent , even with a straight leg, her from putting her heel down to the floor at all.
She is still walking with a brace without her heel touching the ground or bearing weight.
She is now 38 years old, just.
Please give me the name or names of the specialists that might be able to give her her life back.
We live in Connecticut , but will go anywhere that offers hope.
She once walked the floors of Yale’s Pediatric Unit working in pain management. Now she is home on the couch where she manages to find some relief from her own pain. She cannot stand or sit for any great length of time without a great deal of pain.
Please let us know if there is help for her…..she still has a life ahead of her she would like to enjoy again.
Thank you.
Sincerely,
Diane Cooper mother of Allison Cooper
Hi Diane,
I’m sorry to hear about Allison’s situation. I’ve had many complications from a “simple” ankle surgery. I see that you visited HSS. I was recommended to S.Robert Rozbruch there from the Limb Lengthening & Complex Reconstruction Service at HSS. Apologies if this is who you’ve already visited. Also, does your daughter have a pain specialist to help her in the interim and that could work with a specialist when you find someone else? The other specialist who i sought opinion from was Steven Weinfield from Mount Sinai. He’s a foot and ankle surgeon but given the potential involvement of an Achilles contracture for your daughter, it might be worth considering an opinion from a Foot and Ankle specialist.
I wish you all the best in finding a solution for your daughter.
Kind regards,
Nicola
I strongly recommend Dr. Singleton in Fort Worth. I have AF, developed after an infection during a very simple scope 5 years ago.
I have in total had 8 surgeries.
I am having another in 2 weeks. Singletons is doing some amazing things with Lospartan and Stem cell therapy. Also the post-op PT is critical
Victor
Hello
I Injured my knee on the 26th December 2015 (dislocation with fracture) .
On March 2nd I had a Knee scope done to take out the piece of bone fractured that was keeping my leg from straightening. After alot of PT my range of motion hasn’t changed much at all. 6 months later I see my OS again and now I have arthrofibrosis in my knee. Im scheduled on the 18th August for MUA and another scope surgery.
Im really nervous about the pain afterwards. Has anyone had any success with this similar situation and what is the recovery time?
(I also have sever muscle atrophy as I haven’t been able to straighten my leg since December )
Sorry to hear this hope there has been some improvement. I dislocated my patellar in Oct 16 and couldn’t straighten or bend my leg. 8 weeks later saw the consultant he got me in for arthroscopy at 9 weeks post injury to remove bone fragments and scar tissue. I’m now 3 weeks post op and having physio twice a week but still can’t bend or fully straighten leg and there is very little improvement in movement if any prior to surgery.
I have been searching quite a bit lately for information with respect to arthrofibrosis in the SHOULDER. I have not seen anyone on this site with the issue in the shoulder. I had an accident in December 2014 and landed on my right shoulder. One year and four days later I had a right rotator cuff reconstruction. I worked a very physical job climbing to great heights and carrying a lot of tools and equipment for nine months while waiting for surgery. At the time of the accident I was laid off for several months which allowed me some healing. I have extensive repairs done in the surgery. I am almost eight months into aggressive physical therapy three days a week. I have had two cortisone injections since surgery. No relief from the second, and about two weeks partial relief from the first injection. I have very limited range of motion and a great deal of pain, day and night with the odd short break. My therapists have never seen this condition and although I have faith in my surgeon (he helped me with knee surgery in the past and has an excellent reputation), he seems very concerned with treating or correcting the condition. I have found no information on the condition in the shoulder other than what Wikipedia has to offer. One clinic told me the shoulder is a whole different ball game. I want this over with….successfully. Any input and information would be great appreciated. I am from Ontario, Canada. 44 years old.
Try searching the term adhesive capsulitis. You may find more information using that terminology.
I have since had a second surgery (mid September past) to release my capsule and clean up my shoulder to remove the arthrofibrosis. Great first three weeks then pain returned. ROM is great but the aching was pretty bad, and the catching inside my shoulder. At my 8 week appointment I again had cortisone injected. Felt great pain wise for a couple of weeks (still catches tho) and the pain is back again. Can anyone tell me what the joint feels like when the condition returns, please? TIA
I can only speak for knee but it feels as if it is filled with cement. I have virtually no flexion, it is very tight, swells, turns red and purple and is painful. It also feels as if there are octopus tentacles wrapped around my leg from my thigh to my calf.
I could not have described how my knee feels any better. I have been suffering for 7 months and finally someone else has expressed what I feel. I had a knee scope in May and MUA in July. My initial surgery was complicated by reflex inhibition which has caused arthrofibrosis. Thank you for letting me know that I am not alone.
Tami
Thanks. I guess my shoulder now almost feels like its being crushed in a vice. Sore to touch quite often. Also sore in my bicept and back under my shoulder. I am just now sensing that my range is harder to achieve. I am not sure about this road I find myself on.
I’ve had tremendous amounts of scar tissue from AF cut from my knee twice in the last two years. Once by scope and once when about to perform a TKR but when the knee was exposed it was completely encapsulated in scar tissue. I’m now at about 80 degrees of flexion and can only straighten my knee to about twelve degrees from being straight. This same surgeon will not perform an MUA or a scope to cut the tissue as he says, history is on his side, that it will grow right back. I’m on pretty heavy duty opioids and too much Advil just to get through a day. I’m sixty-three years of age and have not tried pot since my youth. Has anyone tried or had any success by using medical marijuana, whether in simply it’s CBD form or it’s THC form. I’m a little reluctant to spend money on this as I don’t have much and I don’t like being high but sometimes it might be worth it for pain relief. So, please let me know if any of you have tried this, with or without success.
Your surgeon is just like the rest of them. They cannot go outside the box. I had a TKR in February of 2014. I have had stiffness and decreased range of motion for 2 1/2 years. I have seen my surgeon from the Rothman group about 10 times more than usual. I have returned to physical therapy and nothing relieves the tightness and stiffness. I am scheduled with Dr. Joseph Farell at Virtua Hospital for arthroscopic surgery for Arthrofibrosis September 14th. It is definitely worth you visiting him. I saw 5 doctors before him, who basically told me, deal with it.
Susan N
Hi , I hope this helps. I recently had a arthroscopic surgery June 15, 2016. Up until recently I had the stiffness and was feeling so discouraged. From my experience from the past from having this surgery before I realized I waited to long in starting therapy and that caused scar tissue to continue to built up. When I had this surgery before I was in therapy. Within a week each time. Also I was attending a therapy center that had a machine specifically targets the scar tissue and breaks it up and my knees went back to bending fine. Just 2 days ago I had shoulder surgery, and leg cuffs to prevent blood clots were put on each leg. They massage the leg and circulate the blood the whole time during surgery. What I didn’t realize until later on that night is that I was able to bend my knee and was not having the pain that I had been having. Only a little. Nothing like before. I am still amazed and excited and. I was anxious to share this info. I was reading so meany testimonies myself trying to get information concerning my stiffness because I was depressed. It takes some kind of machine to get to that scar tissue surrounding that muscle. No hands on can do that.. No ice pack can do that. That 5 minute machine in the sands point physical therapy place worked for me. And its just so happened that I had to have surgery that they put those cuffs on my legs that gave me some relief. I do hope this helps you Maybe it will help you too.
Jackie congratulations on your success! What was the name of the machine and the place where you had physical therapy. Thank you
Hi Jackie,
Do you know if these cuffs for your legs are a standard procedure when getting shoulder surgery? In my case I’m getting an ulnar shortening (osteotomy) surgery near my wrist, in January. If not standard, can you remember, if you know, what the cuffs are actually called and I can check with my surgeon. I will google it, too.
I can’t go to see the doctors everyone recommends because I am a Canadian and our wonderful socialist health care system does not allow for me to travel to the U.S.A. for what they choose to call an elective surgery or any other in all likelihood. I can’t seem to find a doctor in Canada that specifically does work on AF. If I do he/she would probably be booked for years.
In your third last sentence, are you referring to Sand Point, Idaho? That is quite close to me as I live in southern BC. Thanks for your post as it gives me something else to chase in this ongoing search for some long needed relief from AF. I first has a partial knee replacement in 2012 and have been suffering since that time.
Myson had a serious accident and has had two surgeries on his knee and foot. Foot is doing better basically Dr. saying this ROM 40 degrees is the result of scar tissue build up. Maube surgery in a year, maybe not. Not OK. Please can you give us your suggestions for a good followup Dr. and good PT. I am not impressed with Orlin and Cohen or with De. William Schwartz of Massapequa park.
Hi Susan N – Thank you for sharing your story. Would you please post a detailed update on your procedure from Sept 14th with Dr. Farell. Any insight into the recovery would be great as well. My finance has had a rough time dealing with his knee pain. He has had 3 surgeries on the right knee. Surgery one was a TKR; surgery two was a debridment of the scar tissue; surgery three was a TKR revision. He is in chronic pain all the time and I’m searching high and low to find help and relief from all of the scar tissue that has built up. Wishing you much success! Thank you.
Susan,
How did your surgery with Dr. Farell go? Are you in better shape now?
Gail T
I’ve tried it. I don’t like being high either. The benefits are that it helped me relax. Anxiety would calm way down helping leg muscles relax. Less spasms and cramps. Also made me sleepy. All together a much better nights sleep. Do build a tolerance though but changing to a different strain fixes that. Indica with a high thc level is best. If you don’t have to go to work or drive it may help you during the day also. I still work and don’t like being high do I only smoke before going to sleep. I’m told the high feeling wears off with time.
Hi. Im so sorry all of you are going through this. I had an arthroscopy 6 weeks ago for a meniscus tear and debridement, and right now, I’m very sorry I had this done. Although my ROM is 110 flexion, I have alot of knee stiffness and also a very strong pulling sensation in the lower leg connected to my knee. I know this is not normal. My Ortho doesn’t know what to make of the pulling sensation and has just ordered physical therapy for me for 4 weeks. Unfortunately, I was supposed to recieve PT earlier but there was a communication problem between the physical therapy place and the Orthopedic’s office, so I never received any PT for all of this time. My ortho admits that I may have some scar tissue when I brought it up, he just said that it may take a year for it to be resolved and didn’t offer a LOA for the future. He just says I need to strengthen my quads. Excercise seems to make me more inflamed and my knee/leg seems to feel more “hardened” the next day, so I’m trying to be very careful. I still have some swelling , so I’m not sure if the swelling is causing the stiffness or if I have arthofibrosis.
I’ve been very afraid and depressed off and on, since I’m a single woman with no one to depend on financially. I’m trying to be hopefull that I will improve instead of getting worse, but like many of you feel very alone in that I don’t feel my ortho truly knows what’s going on with my knee. He told me that he’s never has to do a MUA for an arthroscopy, so that should tell you how uncommon arthofibrosis is. Anyway, I don’t know if this will help anyone, but I’ve been reading about how the antibiotic Doxycycline has prevented adhesions in animal studies after they received a laminectomy. It was discovered by mistake, but there was a significant reduction in inflammation and TNF. If you Google Doxycycline and scars adhesions, you’ll see the scholarly articles on the experiments that were done. Doxycycline has also apparently helped many people with both osteo and rheumatoid arthritis.
Im wondering if any of the orthopedic Drs. on this list here have considered giving Doxycycline post surgery? I noticed that when I stopped taking Nordco after my surgery, and then started taking Benadryl to help me sleep through the pain, the swelling in my knee looked like it had gone down within the next day, and even more so the following day. I remember that when I took hydrocodone for an apendectomy years ago, I experienced quite a bit of stiffness, so I recently googled hydrocodone and histamine, and several articles stated that opiods cause histamine release in the body. I’ve always felt I had an issue with histamine build up and inflammation for years, and occasionally take Benadryl before I go to bed. I know that excess histamine causes inflammation, and besides the Doxycycline reducing inflammation do to any bacteria in the body , it also reduces histamine. I know there are some side effects to Doxycycline, but Ive decided that if I do need a LOA I would try to get on Doxycycline, take hydrocodone for only for the first few days. Maybe this is wishful thinking, but I do intuitively feel this could be of help to preventing worse scar tissue from coming back.
Anyone have thoughts about this?
Also, Im perplexed at this hardened pulling type feeling that goes from the middle of my knee down my lower leg (somewhat to the right..especially if I do quad excercises ).
It doesn’t happen when I keep my leg straight, but if I try to walk normal, or hang my leg off the bed and raise my leg up slightly, and lower it again, it feels like it is going to break. Anybody else experience this?
Hello Everyone…..I’m a 48yo male. My problems all started back in 1984 when I tore my L/H ACL. I then tore the same ACL back in 2007 and had ACL replacement surgery. After that surgery I had the range of motion but was in constant pain and never able to walk up stairs correctly or run again. Things went down hill and I ended up having to have a TKR on 10/15/2015. The surgery went good but I was experiencing severe pain and I was only able to get 65 degrees of motion. I had a MUA on 12/01/2015. They were able to get 137 degrees out of the knee. After that I could only get 90 on my own. I’m a aircraft mechanic and need my range of motion. I went back to work and things didn’t improve. I had another MUA on 03/01/2016. Again they got 137 degrees out of it. They even showed me pics of my knee bent and my heal touching my butt. Again I haven’t been able to get more then 95 degrees out of it. They got me a JAS EZ flex on brace. I still can’t get past 95 degrees of range of motion. I can’t walk up stairs, ride a bike, run, sit in a chair correctly of even sleep comfortably. I’m now starting to experience hip pain from walking with a limp. The quality of life sucks. I’ve been so depressed. I regret doing this. Can anyone or does anyone know of a Arthofibrois specialist in the Central Florida (Orlando) area…Any help will be a lifesaver….Thanks everyone.
Jeff, did you find someone? I am in N FL and seeking same…
I am almost two weeks out after scar tissue removal/manipulation by Dr Fred Flandry at the Hughston Clinic in Columbus Georgia (actually had the surgery across the river at Phoenix City Alabama in a hospital owned by the Orthopedic surgeons at Hughston Clinic) and I am THRILLED at the difference already in ROM. My ROM was 45 degrees going in and I had been disappointed twice before but I wanted to try one more time. I would highly encourage anyone that has an arthrofibrotic knee to see Dr Flandry. Not only did the surgery go great but the hospital was five star with a super and friendly staff.This was my third attempt at relief over the years to improve range of motion after bilaterlal TKR about 10 ago.Dr. Flandry spent the time emphasizing to me my vital roll participation in the rehab process, Sucking it up and making myself hurt in addition to what the PT folks do. Also the role that resting, icing and avoiding inflammation plays.I have been doing my part I think but he is my absolute hero now because of his no nonsense approach and extremely diligent surgical abilities. You should see my scar, looks like it was done by a Singer sewing machine. I am 68 years old but I’m feeling 40. May try to water ski again later this summer. I HIGHLY RECOMMEND DR Fred Flandry.
I am considering Dr. Flandry for my severe arthofibrosis surgery. Did you have a TKR prior to seeing him. I’m afraid he won’t see me because I have a TKR. Any feedback is greatly appreciated.
I need a name of a specialist for arthrofibrosis in Toronto, Ontario, or Hamilton, Ontario or London, Ontario, Canada. I haven’t been able to straighten my leg for over a year due to a ski injury and my flexion is not that great either. I have had a meniscus repair, scope with MUA and an MUA a couple of weeks ago. Knee has stiffened up and range of motion not improving. Thanks!
have you found a good arthrofibrosis surgeon in ontario yet? i had 3 surgeries with one of the best rated knee surgeons in ontario, but i don’t recommend him. his name is getgood. as funny as it sounds, i did not “get good”
if you find a good surgeon could you please post on here, or even email me as well amro_mohasseb@hotmail.com
I injured my right knee when I was young, and have had a series of surgeries on it over the intervening 40 years. I then tore my ACL beyond repair so I went ahead with a TKR in 2012. I informed the Dr. I had a metal allergy, even showed him the snap on my jeans that is covered with moleskin, and he fed me a line about what happens on the outside doesn’t happen on the inside, and the difference in epithelials, and proceeded to implant an alloy joint. I then spent 9 months in bed, unable to walk or really do anything. The swelling was severe, it was hot enough to cook on. After 2 more surgeries, he sent me to find answers for myself. The 5th doctor ordered a blood test, and I am allergic to metals….They took out the offending joint and replaced it with a Smith & Nephew Oxinium joint. They have since done 6 more surgeries to clean out scar tissue because the immune response has not stopped. The last attempt to clean it out proved to be unsuccessful. The scar tissue is so hard, and there is so much of it, that the instruments would not penetrate and he ended up putting a hole through my lateral tendon. The knee is getting stiffer daily and my range of motion is less than optimal, not to mention the constant pain. Anyone got any ideas?
Have tried:
Acupuncture
massage
anti-inflammatories
Nerve desensitisation
Manual Manipulation under sedation
Scopes
To The Person Who mentioned Dr. David Mayman;s @ HSS clinical trial involving amniotic fluid helping scar tissue build up (AF).
Do you or anyone else out there, know of anyone that has gone through this type of surgery. Was it successful for them?
I’m considering becoming part of the study, but I’ve been through MANY surgeries previously. The last one left me with tremendous pain for months. (some of it has subsided a bit, but my AF is still terrible), I ‘m so fearful that another surgery might make my condition even worse, rather than better.
Any thoughts, anyone?
I saw that post as well, under “Share your experience” but what I saw was someone sharing an article about it from The Wall Street Journal. I had TKR 3/2016, then Arthroscopy and MUA 5/16 and 8/16. Then I found Dr. Mayman. It is amniotic membrane that they insert and treat patient with combination of cortisone and anti-gout medicine (it’s an anti-inflammatory). My surgery is scheduled for January 2017. I am excited/terrified/nervous, all at once. I too have had excessive pain, makes my pre-TKR pain look like slight discomfort. I pray this works and have found that in addition to CPM machines for the flexion (which I am not that bad with) there is another machine EPDI?? not sure, for the extension. I am going to be sure I get that. And when I see cryo-therapy helps I just nod, because ice packs give me the only relief I get. Wish me luck. I wish you luck as well.
Good luck Tricia.
please keep us posted. i am at a loss as well. i had tkr 10 years ago which did great. i was selfish and asked for an arthroscopy to clear out a little scar tissue and everything has been downhill since. two arthroscopies, change out my native patella for implant, change out my patella implant for a new implant and i still can’t walk. i have great extension and flexion but i have a growing mass on the surface that i am sure is fibrous tissue preventing my patellar implant from adhering to my bone. 5 surgeries in 5 months and i can’t walk when 5 months ago i was skiing and biking and hiking. i heard on a blog about this possibility and now i believe it’s real and i will follow your progress with hope. we all just want to walk again without pain.
Please let me know how surgery goes for you..my son has had 3 TKR n has allery to metal..now has an infection n in severe pain…
Surgery is two weeks from today. My pain and lack of mobility are increasing. I am still terrified/thrilled. I am asking questions-lots of them. I am researching best PT for me after surgery. I am going to do everything within my power to get a good result. Dr. Mayman has expressed to me that good PT is critical for a good recovery. I will travel to NYC for it. I am going to try aquatic therapy as well. I’m going to work this like it’s my job. I want my life back badly. I have a son getting married in nine months and I intend on dancing at the wedding. I will keep you all posted. This is a dreadful condition, and I bound and determined to overcome it. Wish me luck!
Anyone ever tried ERMI (End Range Motion Improvement) which is just a fancy term for an extension machine? Similar to CPM machine, but works on extension rather than flexion. My surgeon also recommends a “cold machine” Game Ready. I’ll spend my entire days/nights on PT, CPM, ERMI and cold machine if it will help!!
Pain meds–the percocet really didn’t help with the pain, but made me lethargic and foggy. Is there something that can help with pain but not make me brain dead? My original surgeon wasn’t a fan so I only got one month after TKR and one week each time after Arthroscopy. The time delay percoset in hospital had me hallucinating. Been taking nothing but Tylenol and Advil since, and they don’t do too much either. This really sucks. Really.
Dr Mayman stopped the trial for some unknown reason. I was supposedly top of the list and never got a good explanation. Very disappointing and frustrating! Let me know if you had any success
I had my surgery on 1/13/17 it ended up being a total re-do of the replacement, and it was like a miracle. For the first time in 9 months I could stand straight and bear weight on my left leg. At this point I don’t know if I got the amniotic membrane or not, as it was not mentioned again. I went to inpatient rehab, which was a waste of time as they simply led a group of us in the most basic of exercises, which I could have done myself. Then Dr. Mayman had said I should come to city once a week for PT and do other sessions close to home. I mentioned this to desk staff at local PT and she advised insurance wouldn’t allow that. No clue why they should care, they are covering 30 visits and that is it. I hauled myself into city and am very glad I did. The PT at HSS is outstanding. This is a team approach, and Dr. Mayman;s team was looped in as well. Since then, I have had the scar tissue return and I have used up all my PT. I had a MUA on 3/30/17 and then did intensive PT, which included pool therapy (a blessing). So, I am doing way better than prior to the surgery, yet I am still struggling. My problem prior to revision was extension which was nearly 30 degrees the day the revision was done (its now 6). I am having more of an issue with flexion now, which seems stuck at 95-99 degrees. I am appealing for more PT. In the meantime I joined my local YMCA and go there and do the pool therapy routine that was recommended by HSS therapists. The pain–here’s the best part–while it is still stiff and cement like, I am not experiencing anywhere near the paid I had prior to surgery. People say they can tell I am feeling better just seeing me. Apparently the pain I was experiencing before was evident. I have returned to work. I use a cane but not in my own home and am trying not to around the office. I get up and walk around and use ice packs at the office. If I sit too long it takes a bit to get moving again. I take only Tylenol extra strength in the morning and at night. Doc had prescribed Naporoxen for first month, as that is used up I will contact him and find out if I should refill. One other thing–there was a mix up with the meds when I went to inpatient rehab after HSS, and oddly enough, again after the MUA, so though prescribed, I never got the gout medicine they also prescribe to try and prevent the scar tissue from taking hold. I am probably going to need another MUA, followed by the intensive PT, and I will be sure I get the gout medicine this time. No easy answer with this monstrous problem, but I am not giving up, and as I said, I am MUCH better than I was, just not fully there yet. I wish all well in their pursuits against this dreaded ailment.
Sue,
I have faced a similar situation. TKR, mua, open scar tisue removal, another mua, then a revison to the oxinium implants 3 weeks out mow looking at yet another mua.. my physical therapist said she heard of a patient using some sort of laser but didn’t know what it was called she said it could only be done once a week because it does burn the skin but it breaks up Scar Tissue internally. Wonder if you’ve heard of anything like that
I’ve been going thru much the same with the fibrosis issue and can’t get any surgeon to operate again to remove the scarring. It was removed twice after a partial knee replacement and once during surgery for a TKR. Two surgeons have said it’s pointless and I will just have to live with the debilitating pain and lack of enough motion to use it for much at all. I really worked hard, thru the pain of rehab and it was suggested by my family doctor that if I had perhaps not gone so hard I would not have kept tearing muscle, thereby laying down more scar tissue on a daily basis. Surgeon doesn’t agree, though it seems to make sense. I’m still trying to find an answer and hope you can find something. It is hell on quality of life, for sure, and in my case I’ve had a lot of life ending thoughts. Especially as my other knee now needs a TKR and if I do that I will probably have two useless knees or more useless than now. If you’re like me it’s the pain more than anything that takes over as it’s 24 hours per day. Hate to send you such a doom and gloom reply but this is the answers I’m getting and not sure if I’ll find any relief. Meanwhile it’s almost a year since the TKR and all I can do is keep riding a stationary bike in the hopes that after another year or so this tissue might become more flexible. I can push it past ninety degrees if I keep at it but then two minutes off the bike and I can’t get be about 80 degrees. Another problem is I can’t straighten the leg either and nothing seems to help me there. Good luck to you and I know I will keep coming back to these pages to see if anyone has found success.
I meant to mention, Sue, that I went to laser therapy and it did nothing for me. Had about eight treatments but no results. They are not particularly cheap either. I’ve also tried massage. There is a new treatment that claims to have had success called shockwave therapy but I’m just now investigating that option. Only thing is I’m not covered by any insurance and it is very expensive. Not even sure if insurance would cover it. Probably just another waste of money anyway. Good luck to all, it seems we need it.
Sounds terrible and I’m so sorry. I had a TKA in 2009 with a manipulation and 9+ months of an incredibly difficult and painful rehab. Prior I was a very fit 54 year old male. I cycled 40 miles before the surgery. I did the surgery so I could walk again.
I had one good year and then something happened and I developed a big effusion and a a fair amount of pain.
One synovechtomy and clean out and poly xChange later and one total revision I am more worse and in a lot of pain. Somehow my semimembronsis tendon developed a chronic bursitis.
I don’t have arthrofibrosis per se, but I do have a ton of thick, semi-hard, gooey scar tissue and a lot of fluid.
My HSS Surgeon wants to go back in and clean out the knee and put in an Amniotic Membrane – I’m very worried about getting evrn worse
If you do that, then use HSS therapists for the PT post-op. They deal with mostly problem cases. They don’t just do the normal range of motion exercises. They are very hands on with massage and bending, stretching in ways you could not do yourself. They constantly monitor and adjust your therapy for best results. If you have a ton thick, semi-hard, gooey scar tissue, then you have arthrofibrosis I am afraid. The reason they use amniotic membrane is they found when they started doing in vitro surgeries, that when born, the babies had no scars, so they studied and deduced that the amniotic membrane prevented scarring.
Does anyone know of or recommend a pain management specialist in the Chicago area (Northwestern, Rush, Lutheran General, NorthShore) that is good and/or acknowledges that AF exists? I’m 3 years post ACL recon with 2 subsequent LOA’s and although I have a decent ROM (not passively), the pain seems to be getting worse as more and more scare tissue forms. I’m on a bunch of things (nerve side, SSRI, ibuprofin, tramdol) but they aren’t helping anymore. I’ve tried to go back to my norco stash and it makes me so sick that I’m better off without it.
Another surgery really isn’t an option after the last LOA because the scar tissue was on/around everything and there is much else they can move/take out without more collateral damage. I’ve maxed out on PT and tried acupuncture, chiropractor and massage, but they don’t provide much relief – if at all.
Looking for recommendations of PM specialists and any suggestions to deal with pain!
Dear P N
My friend goes to Innovative Pain Specialists They have a few locations. Arlington Heights,Libertyville and more. # 847-593-6800 My friend goes to Dr. Louis and is very happy.. Good luck. Teresa
Does anyone know a Dr in Oklahoma that treats this ? Please help if you do.
Hello,
After 3 major knee surgeries in 20 years then finally a total knee replacement I developed Arthofibrosis. I had a MUA and 2 surgeries where the doctor cut and lasered all the tissue. Both times the tissue grew back.
It’s been 3 1/2 years since my last surgery. I was left in chronic pain and my leg is weakened even though I workout regularly. My ROM is 90 and flexion is -3. I spent 2 years in physical therapy. I tired Accupuncture and “medical massages” for the pain. I finally found relief with Cryotherapy.
If you haven’t heard of it, google it and see if there is a place near you. Even though I don’t have any change in my ROM or flexion, I no longer live in pain.
I feel so good that I am back skiing. It’s difficult on the chair lift because my leg won’t bend but I figured out a way to do it. I’m living an almost normal physical life again.
I was pretty devastated when I found out there was no cure for this but at least now I can live with it and enjoy some of the sports I always loved.
I had a TKR in December of 2014,6 weeks later a MUA and then in another 2 weeks another MUA.In the 2nd MUA they fractured my femur. So then no pt… My ROM is -5 extension and about 65 flexion. I used to be very active and now I can’t do anything.I walk with a limp,have to walk down stairs sideways,can’t ride a bike,etc. Does anyone know a Doctor in the Los Angeles area that deals with patients with AF?
Laura,
Your situation sounds very similar to mine. I’m thinking about trying Cryotherapy… How often do you go in for a session? Does it help with anything else, or just the chronic pain from the arthofibrosis?
Hi,
Does anyone knows a good doctor in NYC or Miami? I live abroad and only have relatives in these two cities.
Im 31 and have been suffering from extreme pain after one meniscal repair+ microfracture surgery, and a subsequent procedure to remove scar tissue. It appears that the scar tissues are back and worse. I can barely walk, my quads are wasted and my active ROM in flexion does not go beyond 90 degrees. Bending my knee feels like a knife is cutting through my skin .Im about to lose my job as I have been on leave for 6 months and my doctor tells me I have nothing to be concerned of..like its all in my head.
I have read great things here about DR. Finn in Chicago, but I know nobody there and have never been to Chicago before.
I hope I can find a solution because Im feeling my life is going down the drain. There is only pain, every single day of my life. Pain.
Hi Marlene,
Im 19 and I tore my Acl last february and for the last year I have had 5 knee surgeries, 4 of them just to remove scar tissue. I have tried everything but it just grows back thicker and the more time passes the more painful it is. The last surgery I had was in December of 2015 and I also had a treatment of radiation before the surgery hoping that would stop the scar tissue from forming, but it didn’t stop it. I just recently went to Mayo clinic for this problem and they told me that there is no cure. They gave me a flexion/extension brace to try to break up the tissue. They told me that it is just going to be a matter of time. Im striving for 115 one day, they assured me that people are able to function almost normal with that degree of flexion. I am currently at 90-95. Im sorry this is not the news you wanted to hear but I felt I would share my experiences with you. Goodluck to you and I hope one day you will be able to reach at least 115. Don’t give up. Im right here with you.
Marlene
I have zero degrees of flexion in my right knee resulting from two TKR’s that failed and resulted in aggressive growth of adhesions/scar tissue. I flew up to Chicago from Oregon to consult with Dr Finn tomorrow. I have read his journals which was published in the Wall Street Journal and read about his successes working with others re: AF. I have been with no flexion and chronic severe pain for 10 years. So, I will let you know what my outcome is. Just remember, everyones circumstances are different and your DNA/genetic factors can come out different than anyone else. A consult would be best for your particular case, in my opinion. I’ll b in touch. Good Luck
Hi my name is Jackie , you might want to read my post. I just posted it about 15 maybe 2p minutes ago . look for the name Jackie. I hope you’ll find some info helpful to you . good luck
Hi to all of you arthrofibrosis suffers. First of all, thank you to those that responded to my post above.and for all of the wonderful insight many of you provided. My best wishes to you all. At the age of 58; I remain in chronic pain of 8 on the pain scale with 0 degrees of flexion in my right knee, bursitus in my left hip from my chronic limp and back issues partly caused to the twisted way I have to get up when you cannot bend your knee at all for the past 12 years. The great news is I am going in for surgery April 11th, 2017 in Chicago by Dr. Finn. After my consult with him, he believes he can fix the knee using his articulating knee he developed, radiation therapy prior to surgery and physical therapy twice a day for eight weeks, in Chicago. We live in Eastern Washington in the Pacific Northwest, so living in Chicago away from our beloved dog Murphy and our home will be challenging to say the least, but exciting. I just can’t imagine not living in pain day in and day out. This will be my third replacement on the right knee in 12 years. I also had a replacement on the left knee in 2013. My left knee flexes, but the prosthetic is significantly smaller than the device in the right. Although, I have adhesions in my left as well as my right, I at least have fexion of about 80 degrees. It is painful also, but not to the degree of the right. So, I go with excitement, butt scared to death knowing what is coming. With fibromyalgia, my pain levels are quite intense, even with pain meds. But, with lots of support and maybe many of you will keep me in your prayers, as I will all of you for success towards a better quality of life for all of us. Thank you for listening.
I would strongly recommend the New York Hospital for Special Surgeries. The Orthopedic Department
Susan
I wanted to share this great wall street journal piece with you all about arthrofibrosis.
http://on.wsj.com/1S0Iaam
It mentions three doctors in particular, and their innovative work in the field. Has anyone had any experience with any of these doctors?
1) Dr. Abdel (Mayo Clinic): Genetic testing to determine genetic causes that lead to heavy scar tissue build-up. Leading a clinical trial to evaluate the use of anti-inflammatory medicines
2) Dr. Henry Finn (Weiss Memorial): Exposes knee to low-dose radiation just before surgery, which helps reduce the scar tissue formation
3) Dr. David Mayman (HSS): Running clinical trial for arthrofibrosis patients, where he places a membrane made of amniotic tissue from donated placenta in the knee during a lysis of adhesions procedure.
Bret, I haven’t been on this site for awhile, but tonight I see your email from March – hopefully you have found a dr. and relief by now. However in response….after having to research my symptoms on my own, no dr. ever told me I had AF ( I had 4 surgeries, which included 2 TKR, 2 scar tissue removals, before I found Dr. Finn)
Quite upsetting to see that Dr Mayman is doing a clinical trial, yet he never told me that my condition was AF. ..
When we discussed surgery , he told me that he was going to have me get a radiation treatment, and then right before surgery, he decided to treat me with high doses of vitamin C, rather than radiation. My surgery was unsuccessful and because I was desperate for help, and he/they had no answers they dismissed me. They won’t even take phone calls from me. Now to find out he he’s doing a trial. He probably wouldn’t take me on as a patient again. But I”m going call HSS . That surgery was Summer2013. Dec. 2015 Dr. Finn performed surgery on me…..great hospital, great dr, but he was not able to get rid of my AF…so disappointing. I’ve been out of work for 7 months. I’m in pain 24/7, so limited in my activities. I was quite active previous to my lst TKR, now, I’m disabled. It’s upsetting, depressing, and painful. Good Luck to you..pls. let me know if you were able to get into Dr Mayman’s trial, thanks.
Bert:
I have been VERY strong through this hell of AF. Upon reading your post I literally cried. Had TKR 3/15/16. Star patient. Sent home early from rehab. Six-seven weeks in not progressing and feel like huge rubber band in my knee being pulled taut. Have arthroscopy w MUA 5/13/16. Initial.improvement but feel it coming back. On 8/9/16 do it again. Surgeon ordered CPM for 3 weeks. Got better flexion but extension couldn’t get past 10-12. And the pain. I had 3 kids and many dental procedures with no anesthesia so I am no wimp. The pain before TKR I now consider discomfort. 24/7. Ice packs offer some relief. But I can barely walk with a cane and it’s exhausting.
After all this I used a very good connection to find a great doctor. And you mentioned him. Hence my tears. I had already figured out via Google that I have AF. Praying when Dr. Mayman does surgery in January I will have good outcome. I don’t know if it’s still a trial but he talked about amniotic membrane. Apparently babies born after microscopic surgery in utero have no scars. Praying this is the answer.
Hello.
My name is Kristin and I’m wondering if it’s possible to develop arthrofibrosis after multiple hip surgeries?? I had 8 right hip surgeries within a 2 year period – 2 arthroscopic procedures, with the 2nd one being very extensive, I then had my first total hip replacement which failed within 3 months, followed by an I&D for an incision infection, then 2 more hip revisions after that. My last surgery was 12/07 and for the last 2 years I’ve had off and on problems with the hip. I’ve seen 5 ortho surgeons who can find nothing wrong. I will say that the imaging they’re judging this off of are MRI scans in which the hip joint cannot be visualized due to the huge amount of metal hardware I have – 8 screws and a plate (they fractured my pelvis during the 1st hip revision). Labs and tests to make sure I don’t have an infection or metalosis going on have all be negative. All of the surgeons are looking at my case within the “box” of what normally is wrong when a post THR patient has pain. What I keep asking them to do is to think outside that box since what’s left in my hip and how it structurally looks is going to be vastly different than someone who has had only 1 THR. The episodes of debilitating, excruciating, stabbing pain from my groin to my knee are more frequent and I’m absolutely desperate to find some answers. I’m wondering if the possibility of arthrofibrosis might be the cause of my symptoms. More specifically, if the excessive buildup of scar tissue could be pinching a nerve in my groin. The pain starts with what feels almost like a muscle spasm that triggers a nerve that shoots stabbing pains down my thigh. I am a nurse and I love my work, but am unable to work when the pain is like this – I can barely walk when it’s bad. I had my first hip replacement when I was 36 yrs old and am now only 45 yrs old. I’ve have so much in life that I want to do, but am extremely limited with the pain that will randomly come & go – lasting anywhere from 3 days to 2 weeks at a time.
Thank you for your time and I welcome any thoughts or suggestions anyone may have.
Hi all, does anyone now of an AF practitioner in Pennsylvania or Maryland?
How about any comments about the docs at John Hopkins in Baltimore?
I am a 73 yr old very active person (athlete) that has AF. What started with pain in my left knee caused by sports prompted me to check it out and so I had about 4 athroscopic surgeries in 10-15 years prior to my first TKR surgery. I was then diagnosed with AF. I had my 2nd TKR surgery due to my being limited in doing sports and of course limited ROM.
I am now reviewing this and other related sites to get both an honest opinion about JH in Baltimore and also for finding a new Dr. that can help (am looking at the Steadman Clinic and Weiss Memorial Hospital).
Any comments would be greatly appreciated.
Regards,
Robert
I had a TKR February 2012, followed by a revision March 2013, April 2015, and a manipulation under anesthesia (MUA) July 2015. With all that, no improvement in my knee. I have ROM at about 70-80, I can’t lay my knee flat, I have severe swelling and pain after sitting, standing, or walking only a few minutes. I have gotten 2nd and 3rd opinions from two additional orthapedic surgeons and they all say my surgeon did everything he could for me. I last saw my surgeon and he informed me that he felt I would not have much more improvement. My knee is still warm to the touch and discolored like I just had surgery weeks ago. I found this site a few months ago and sought out a specialist because I was informed I have scar tissue (Arthrofibrosis). I live in Florida and have travelled all the way to Chicago to see a specialist. If anyone has any knowledge of Dr. Charles Bush-Joseph, I would be glad to hear your thoughts. I will share what I find out from him.
Try Dr. Finn in Chicago. I have the same exact story as you do. Dr Finn is doing radiation and a Finn knee in March . Counting the nanaoseconds.
I sympathize with everyone on this Forum re: their problems with arthrofibrosis. It is a terrible condition that is extremely difficult to find doctors with the expertise in this area. I know of what I speak. I too have severe arthrofibrosis following two TKR’s on the same knee. In the past ten years I have had 4 manipulations, following replacement surgeries, months and months of physical therapy, used CPM machine for months, you name it and I still get AF. I’ve been to three orthopedic surgeons, one that works on very complex orthopedic issues, and none of them could help me. My ROM is 0 degrees so I know all of you can imagine the extreme pain I am in and the impacts to my body I endure just to live.
I will go anywhere to find a top notch doctor that specializes in AF and can help a person that has a prosthetic and no ROM.
Can anyone suggest who I should go to, (Dr Henry Finn in Chicago, Dr Ajai Cadambi in Ft Worth, Texas, Juan “Jay” Rodrigo in Waco, Texas, Dr Noyes in Cincinitti or Dr Eakin in Palo Alto, CA.). I’ve heard very good things about all of these. I just don’t want to make a long distance trip only to find the doctor won’t work on me or cannot offer any solution due to the severity of my AF or the fact that I’ve got a prosthetic. PLEASE HELP ME! Thankyou!
Deanna I suggest you call Dr Finn’s office and talk to his nurse assistant Betty. Give her all the details before you go all the way to Chicago. She is great and very helpful. I live in Cape Cod and am leaving in a few days for my surgery.
Hi Lenore. It has been quite some time since I wrote about my issues with Arthrofibrosis. I have an appointment with Dr. Finn in the next couple of months. I cannot wait to talk to him. I cannot imagine what it would be like to have flexion again and no pain after ten years of this. Betty was shocked when I told her I had no flexion whatsoever, so I am praying Dr. Finn can still fix this leg.
Thank you so much for suggesting him. I have read his journals and it sounds hopeful. We will see. Hope you are doing well. I’ll be in touch once we consult with Dr. Finn.
I don’t know the doctor but I have an excessive amount of scarring inside. My therapist and myself do a MYOFACIAL RELEASE massage which helps the ROM and breaks up the scarring. In 12 session of PTY my range of motion has gone from 70 to 100. Still a ways to go but I do the massage every night at home plus strengthening exercises. I am 67 and so far it is working but slowly. I am also exercising my other knee due to needing a replacement.
I use a BREG Ligament (ACL/PCL) brace which really helps my other knee. When I wear it there is “NO” pain. I am using it as long as possible as I do not want another replacement. The pain and swelling was so bad I needed manipulation and “20 days in hospital” with 2X daily PT. Now I got 3 days a week and the knee is to be about 100 degrees but therapists said not to expect above 110 degrees.
Evonne I also had two TKR and had surgeons who said there was nothing more they can do. I don’t understand why they don’t keep up with what is being done in this field. I studied and searched myself and found Dr. Finn in Chicago. I even called one of his patients by googling her name after I read an article about her success. She was more than happy to talk to me. She was in a wheelchair for 4 years and is now doing fine. What Dr. Finn does is use radiation on the scar tissue and then put in a new knee he developed. I am very optomistic and counting the nanoseconds till i get there. My surgery is March 10 2106.Please contact the office they are very experienced in our type of problem. Good luck to everyone
OMG … I have the same pain, in my (former)good leg. I’ve had 3 Total Knee Replacements on the other leg. I went to pain management for my knee, and the dr. thought the nerve pain had to do w/ my back. The MRI showed a bulging disc L4-L5 ( i’ve had this disc prob for years, as well as herniated and degenerative discs….but the dr. suggested 3-4 rounds of epidurals….I did 3 rounds, I was not a candidate for the 4th, because I didn’t get 50% or better results.
Now I’m going to A.R.T. therapy – active release therapy….the dr. deals with trigger points and soft tissue…i’ve had 2 visits and while i’m there i feel better, but it doesn’t continue.
My pain is horrible, down the front of my thigh and in my groin and hip….i can’t work…between my knee issues and now this horrific nerve pain. thx. for writing. pls let me know if you find an answer, and so will i.
I have been battling AF post a left knee TKA May 2014. I have had an MUA and Lysis of Adhesions which have helped the AF but certainly no way near normal flexion. Extension is acceptable. The knee still swells when active and gets stiff in the evening after a day’s movement/activities. I have turned my attention to and have recently spoken to my Hematologist with regards to the most current research regarding AF formation post surgical insult to the body. I have an impending right knee TKA (Feb 2016) and I want to be as proactive as possible in understanding research related to blockers used to prevent excessive collagen response post surgery….the hallmark of AF. I have done some initial research and will discuss with my Hematologist, however, has anyone done similar research or has knowledge of blockers administered to lessen the formation of fibrotic tissue…..i.e. decor, surname, gamma-interferon, or relaxin? Dr. Finn in Chicago at Weiss Memorial uses a dose of radiation post surgery to lessen the fibrotic tissue formation.
If there is research out their to support use of blockers prior and post surgery to lessen the AF effects we can all benefit from this info. Once you have AF you are left to deal with it and we must keep searching for ways to treat it.
This is coming a bit late. I’m delighted to encounter this website. I am almost 4 years post TKR with AF issues that ensued. That first year was dreadful! I finally found a few on Bonesmart.org that had similar experiences. It also has an extensive library and is monitored by professionals. Just knowing you aren’t alone, is helpful. Dr. Frank Noyes in Cincinnati has written a book on AF that is available for Kindle through Amazon.com.
I had 2 arthroscopic surgery on my left knee to excise large tears in medial menicus leading to a left tkr on 04/28/15. Now I have developed severe arthrofibrosis and even after extensive physical therapy and a mua, I have not seen any improvement. I am looking for an ortho surgeon in San Antonio, Texas who treats this condition. I am fearful that my surgeon who did my tkr is not very knowledgeable about this condition and am looking for another opinion too. I was issued a JAS knee brace 3weeks ago but have not seen any improvement with my flexion. It is less then 90 degrees presently. I was able to achieve excellent extension thankfully but my flexion is poor. As well I have severe osteoarthritis on my right knee. Have undergone arthroscopic surgery to repair two bad tears on my right knee. I’m very frustrated with my lack of progress and improvement. Plse advice me on who I shld see and what I can do soon as time is my greatest enemy. Thank you Carlos
I have the same story as you Carlos; However I am in Boston and I have the same feeling about my surgeon. Were you able to get advice after your posting here? Please let me know and if anyone you were referred to might know of a specialist in Boston. Thanks, Michael
Same story here. I have Aggressive Inflammatory Osteoarthritis in both knees. I have had the same problems as you have, Carlos. I had my first TKR in Feb/15, had a revision done in Sept/15 and then the 3rd revision this past Feb/16. I have a great surgeon, but I live in Canada, near Toronto, Ontario. He is not a specialist in Arthrofibrosis, but is well aware of the disease. As far as he knows, and as far as I can find researching on my own, there is NO cure for the disease. Scar tissue forms at an exponentially high rate in the joint. Nothing can stop it. No doctors have figured out why.
My knee, after this last revision, has remained at 75 degrees flexion and 15 degrees extension. Scar tissue has formed (I can feel it when my knee bends). The knee is still “hot”. The good news is that I have not lost that 75 degrees flexion. That has remained static for about 2-1/2 months now. The bad news is that I have to use canes to walk.
What I have found works best is to move the joint gently. I go to physio 3x a week, and she gently manipulates it. Aggressive physiotherapy was a disaster and resulted in this last revision.
If anyone does find a doctor who thinks they have found the answer to curing this crippling disease, please post on here.
Just keep walking.
Dear Sir: I apologize in advance for this request but I’m presently suffering from arthrofibrosis after a TKR in Feb. 2015 and an MUA in March 2015. After the surgery and MUA my knee was acutely inflamed with soft tissue swelling and “hot” to the touch as well as a loss of motion. Both my mother and I have histories of adhesion / scar tissue formation but there is no one in the Tampa, Florida area who can diagnosis my current condition as having “Primary Arthrofibrosis”.
Unfortunately I am in need a THR on the same leg as the TKR. I am desperately in need of any information you may have for the formation of arthrofibrosis in the hip and the proper protocol, if any, for PT/rehab after a THR. After my MUA the orthopedic surgeon’s protocol indicated “Aggressive PT” which is apparently not indicated for an arthrofibrotic knee. I would greatly appreciate any information that you can provide.
With sincere appreciation for your assistance,
Susan DiPaola
In the last 4 years I have had 3 knee replacements, 2 revisions and 3 manual manipulations to my left knee. I developed arthrofibrosis after the first replacement that has returned after each surgery with both aggressive and non-aggressive physical therapy. The first surgeon measured my knee for a 9 mm hi-flex insert but inserted an 11 mm insert instead and I have been in pain ever since. My range of motion is extremely limited. My last replacement in December 2014 included a stem which extends significantly down my left leg and causes extreme end-of-stem pain when I walk. The stabbing pain sometimes radiates to my ankle and both sides of my heel. It is so severe at times I cannot walk more than a few feet. I cannot work and my savings is dwindling rapidly. I am so desperate that I am even considering amputation.
Does anyone know of an arthrofibrosis specialist who also treats end-of-stem pain? The pain in my shin has become even more painful than the scar tissue growth around my knee. My quality of life is zero; the pain has become pretty unbearable, and I really need help.
I appreciate any assistance anyone can provide me.
Susan Smoyer
Susan, dont know about arthrofibrosis, but could you have a nickel or metal allergy? Check out Dr Gerhart Maale in Dallas. I belong to a support group on facebook that is phenomenal
Hi Susan,
I just had a knee revision and I have the same symptoms in which you describe. Have you found any relief from doctors that treat Arthrofibrosis or deep tissue massage? I too am seeking help.
Bo
Hi to Susan and Bo,
I’m having the scar tissue buildup with my TKR. Some days are better than others pain-wise, but I have found that going to a medical massage therapist (deep tissue massage) helps a lot! I go once a week to see her, and I still do PT twice a week. I’m looking for an arthroscopic surgeon for a consultation in Atlanta, GA. I think my surgeon may have given up on me since he feels that neither manipulation nor arthroscopic surgery would be of little to no benefit to me.
Phil
Phil,
I am 4 months post-right TKR and have arthrofibrosis throughout the knee. I still have good extension and flexion but great pain on walking and driving because the adhesions “catch” in the knee. My knee cracks, pops and clunks. My orthopedic surgeon here in Rome, Georgia hopes that the scar tissue will smooth out in a few months so that I can avoid additional surgery. The scar tissue is so widespread that I might not be a candidate for arthroscopic surgery. Aggressive PT and excruciating regular stair climbing have only worsened the problem. Have you found an ortho in Atlanta who has helped you? Do you have a resource for deep tissue therapy? Thanks.
Such a similar scenario as mine. My life changed dramatically after my first Total Knee Replacement., June 2011. Since then I’ve been in pain everyday, all day. I too thought of amputation. Since June 2011, I had 2 revisions, 2 Scar tissue removal procedures, and 3 MUA’s.
My last surgery was December 2015…I went to Chicago and stayed there 2 months and 4 days. For me the surgery was unsuccessful, and I now have additional painful medical issues related in my shin, ankle, and foot.
It’s so upsetting. I was suppose to return to work 3/7. There is no way I can return now, nor probably in the near future. I try not to be negative re: my condition, and progress, etc., but I don’t think I’ll be able to return to work ever. I miss teaching, I miss my students, but have not been a 100% great teacher since when this all started 6/11.
My pain is bad. I think my tolerance of pain has increased, but I still don’t want to live life in chronic pain. I continue to research for anything that might be helpful. Not one doctor had any answers for me. Now I feel so alone. I have this new horrible condition, and have no doctor that can help, nor cares to speak w/ me anymore because I have not been successful.
Dr. Finn and staff are great! Weiss hospital is wonderful. The nurses are so helpful and compassionate. If you’ve tried getting better via your local doctors, and haven’t been successful, definitely go to Dr. Finn. His success rate for helping patients that have stubborn AF is excellent. It’ is worth going to Chicago. Make sure you go there remembering that your knee recovery is #1 . Do your exercises regularly. Don’t worry about work/chores/etc. Don’t worry about going home ASAP. You’re there, for your “miracle” surgery. It’s your chance to get your life back. Best of luck to you all.
Laurie, You had the surgery with Dr. Finn which included the radiation? If so, did they give you any explanation as to why you didn’t have good results?
My body/knee/scar tissue is SO STUBBORN. Dr FInn did everything he could. My knee is a puzzle to all the medical professionals I ve seen. But can t imagine living with this pain for the rest of my life. I deAL with the pain,because I have no other choice. If ANYONE has any ideas /suggestions that I can research, PLEASE let me know. So desperate to be out of pain. So anxious to get my life baCk. Been in pain for almost 6 years. I m tough, but this pain now is dibilitating. My knee probably cannot handle any more surgery. Thx!
Chris,I think it s very rare that it doesn’t work, so if you are thinking about it…DO IT! Imagine your life without pain. I would try anything, but I ve tried so many different therapies and surgeries, I don t know of any others for me right now. Good Luck!
I would be very careful going to Dr. Finn at Weiss Memorial. I went to See Dr. Finn in August, 2015 for severe arthrofibrosis in my left knee replacement. He said I was an excellent candidate for his radiation treatment and “Finn Knee” He, however, was unable to due the surgery himself because of his own health issues(he needs a knee replacement and could not stand long enough to due the surgery), so he referred me to his partner Dr. Yasser Farrid. I saw him the following day and he agreed to do the radiation and surgery. The radiation is actually administered right before the surgery, not post-op. I spent a month getting the required testing done before the surgery and was admitted to Weiss on Spetember 21st at 5:30a.m. I was given the radiation at 7:30a.m. and was taken into surgery. Under anesthesia, Dr. Farrid moved my leg around and determine that with a -5 extension and 95 degrees of flexion, I had good range of motion and did not perform the surgery even though I had documentation that clearly stated my passive range of motion was 0 and 130 degrees. I was devastated. I was not given any explanation other than that my pain was just nerve pain and not actually pain from the arthrofibrosis. So, I was exposed to the radiation and did not receive the surgery. Since, then, I have had a bone scan which now shows that my replacement is loose which is most likely the result of the radiation exposure. The staff at Weiss Memorial was also very incompetent. They did not review my records and exposed me to a substance I am highly allergic to which burned and blistered my back. So, I would think twice about seeking help from Dr. Finn at Weiss Memorial.
Does he know of anyone in the Seattle area? Going to Chicago is financially beyond my means.
i am in the seattle area too and will be talking to my orthopod about this. i think i finally have a diagnosis and i will be sharing it with my doctor who really really wants to cure me. if anyone can do it he can, i trust him. i am down in olympia.
Did you go to dr. Finn did it help.l am interested in going I have it in both knees and am in chronic pain is there hope here in withDr. FINN.
Laurie,
I know your story. I too was a teacher. Now I fill in as a sub, tutor, and do after school programs. These options are still open if the pain isn’t too bad and it is mostly stiffness you contend with. Check with alternate avenues to teaching. It might be better than full disability.
Martha, Thanks for your thoughts! Unfortunately, on any given day I don’t know what kind of pain, or what pain level I will have. Right now I’m trying to get relief from horrible nerve pain going down both my legs that is originating from my back. Fortunately, my back is not hurting. I had a spinal epidural this past Weds., which can take 3-7 days to” kick in”. I also have plantar’s fasciitis since surgery, so I’m now paying our of pocket for PT, to try to resolve that issue. All my symptoms/issues are the result of the AF knee, and the inability to bend and walk correctly.
Unfortunately I would not be able to sub because I cannot stand, walk, or sit for too long a period of time. I appreciate your email. Thank you!
Have you found end of stem pain relief??? That is just one of the issues I m hvg post total knee and 2 unsuccessful revisions, 2 scar tissue removals, and 3 unsuccessful MUAs! Also severe swelling of knee And “Good ” leg spasm pain, perhaps from compensating for my awkward walking, and plantars facitis (sp?) In my bad knee foot. Anyone,any suggestions? ??? Life is very tough right now!
Susan, I’ve been down this road (5 knee surgeries, renowned specialist in AF telling me amputation is a possibility, not able to work, in chronic pain, losing hope etc), then I went to Dr Donald Shelbourne. He’s not the only one who can fix, but his team was amazing even giving me a consultation. Point is it’s worth doing your own investigation for a doc who us right for you, who has had a success rate with the exact issue you are dealing with. I had a lot of interviews with knee surgeons over the phone and pressed them on their success rates, experience with my issue, and procedures before/during after surgery. I spent a lot of time researching and cross referencing publications in knee trade journals and research publications, and eventually after months, interviewed 5 surgeons across the country and found my doc… Shelbourne. I took out big loans to cover traveling and life, and ultimately had the surgery and did the post op work. It was over a year post op that I went back to work. Been in pain for 14 years but it’s manageable, and now I get cortisone shots to cover that. I have full extension still and great ROM. Still have to work at it, and maintain exercising and healthy life, but all that was worth it. Please don’t give up!
Sure would like to know who else was on your research list. Anyone in the New England area?
My partner had 2 surgeries with Shelbourne in Vail. He still cannot bend his knee enough to climb stairs – one would think that in the era of medicine and technology, there would be some kind of treatment for this condition.
Yes, one would think that wouldn’t one? I have had this since early 80’s and it is absolutely beyond my comprehension that they know nothing more today than they did back then (which I was told by both OS and Rheumatologist). The so called “experts” apparently are not particularly interested finding out WHAT CAUSES IT AND HOW TO STOP IT. I contacted the illustrious Vail location’s research department on 2 separate occasions inquiring what they have done / are doing in terms of research regarding the cause and treatments to stop it and never even received the courtesy of a response. Why would they want to find the cause when they are raking in big $$$ from individuals around the world flying there to be “cured”? It is reprehensible.
Susan —- your story is identical to mine. Please find a pain management Dr that hears you & believes you. My replacements were 10+ yrs ago & the pain has never stopped. Pain medicine isn’t perfect but it’s WAY BETTER than none & ive been able to continue my life . I was on the verge of suicide before I went for pain management .
Hi Susan, I just read your story. Man, it sounds like you’ve been living a life of too much pain. My lifechanging surgery was 8 years ago with total knee, malrotated by 33 degrees. Recently a surgeon diagnosed me with arthrofibrosis, and that finally defined why I have been having this crippling pain, which gets worse every year. So many limitations, and much worse with a change in the barometric pressure. This condition/surgery has robbed me of my life (I am 61 now).
I am on a list for surgery here in Saskatoon, Saskatchewan, Canada (Dr. Ivar Mendez). It is called “spinal cord stimulation implant”. You can google Prodigy Chronic Pain System with Burst technology. I am undecided whether to take the surgery. FEAR.
The information that you can google is from St. Jude Hospital:
I have a pamphlet from St. Jude Medical, called Neurostimulation for the Management of Chronic Pain.
1 800 727 7846. I am waiting for their information package The website in their pamphlet is “PowerOverYourPain.com”
I hope I haven’t overloaded you with too much info. As I said. I am undecided. Where do you live? I would like to talk to you.
I have an appt to see dr finn in Chicago in December. I have had a tkr in sept of 13 and a revision in dec of 14. Severe scar tissue and inability to walk have ruined my life. Does anyone have a success story about surgery for srthrofibrosis with dr. Finn. I would love to hear from you. Thanks Lenore
Was Dr.Finn able to help you? I hope so. Unfortunately my body was a failure. I went to Dr. Finn, but was unsuccessful
Hi,
I am a 54 year old active female looking for someone to treat arthrofibrosis in my left knee. I have had multiple surgeries on this knee (more than 8) with the most recent being done February 2012 (knee replacement), March 2013 (revision), April 2015 (revision) and July 2015 (closed manipulation). I have knee pain, stiffness, and limited range of motion. I also can’t straighten my knee and I walk with a slight limp. I am unable to sit, stand, or walk for more than 20-30 minutes at a time without stiffening up and pain. I am looking for someone to treat this condition in the central/south Florida area. Any recommendations would be greatly appreciated.
Hello- Can someone pls call me so ERMI can partner with you all?? We recently hired an ERMI San Diego rep so she is near by to meet with you all.
Thank you,
C. Gerrard Anderson
Senior Orthopedic Consultant
End Range of Motion Improvement, Inc
Cell 803.348.2996 | Efax 803.753.9143
“Stretching the limits of end range of motion since 1991”
http://www.GetMotion.com
can someone please tell me if you can apply for social security disability due to arthrofibrosis of the wrist and hand I am in severe pain all the time and my joints swell up and don’t move the doctors say this is permanent any input would be very much appreciated as I cant seem to work at all due to swelling. I was involved in a bicycle accident/hit and run and woke up to a non-moving hand and wrist along w shoulder and neck problems but the arthrofibrosis is the debilitating problem thank you
I am currently on Social Security Disability because of knee replacement surgery and the fact that I kept developing arhrofibrosis and was in too much pain to return to work. If you can’t work and can get your doctor to document that, I am sure you qualify for SSA. I would hire someone to represent you when dealing with Social Security as it is a long process and they will deny you. I was denied 2 times before being awarded.
Does anyone know of a knee specialist around the Sacramento, CA area who deals with AF and or pain management? I had my RT TKA Jan 2014. Dec 2014 my ROM was 82, today my ROM is 27. Along with the lost of motion the pain has severely increased. It feels like it’s in a vice. I am tired of living in pain 24/7.
I am looking for a knee surg. that specializes in helping people recover that have had knee surgery and now have Arthrofibrosis . We live in Berwick PA.
My recent LOA and MUA with Dr. LaPrade
7/30/15 Thursday – Dr. LaPrade did a “severe LOA and MUA” of right knee to get rid of my scar tissue. Surgery took about an hour and there were no complications. He said he took out “a large handful” of scar tissue. He used a debridement tool, which was a little surprising since I thought they didn’t use this at Steadman Hawkins when treating AF to avoid the bleeding. I sure hope the bleeding is controlled!!
7/31/15 Friday (Day 1 after surgery) – I stayed in Vail to do PT twice daily for the next five days. Day one went well. I still had my nerve block in and really couldn’t feel anything, but we worked on ROM in the morning and evening sessions. Pain was at about 1 which was amazing…I haven’t been there in seven years.
8/1 Saturday. I was introduced to the 3rd PT that I’d be dealing with while at Howard Head PT. He’d be helping me all weekend. I was feeling really good in the morning and there was no real swelling. My nerve block was definitely still giving me some relieve! For some reason, the PT had me do some things that weren’t on the PT protocol list that they gave me for the next three months. He had me do some mini-squats and leg pulls and I didn’t understand why. I should have said something, but I didn’t. I started feeling some pain and discomfort the evening of 8/1 .
8/2 Sunday. I was pretty sore in my quads, but we continued with the mini squats and leg pulls in addition to other ROM work. I also did the bike for 5 minutes in the morning and 10 minutes in the evening. I was very sore the evening of the 2nd.
8/3 Monday. Back with my 2nd PT today. I was so sore that he had to spend a lot of time doing soft tissue work to relieve the pain enough to do simple ROM exercises. He still had me do a few mini squats until he saw that it was just too painful. My PT in the evening (he was new and my 4th PT) stopped all of the strengthening exercises and focused on regaining my ROM. My knee was very sore and a little swollen, but didn’t feel hot, thank God.
8/4 Tuesday. Last day in Vail. Two sessions where we focused on soft tissue and quads that are very tight and painful. I’m not seeing much progression with my ROM at all because of the pain and tightness in quads. Drove to Winter Park Tuesday evening and will rehab there until Sunday. I will be seeing a PT in Granby.
8/5 Wednesday. I was so sore that I didn’t make it to the PT today. My knee is very sore, tight and pretty swollen.
8/6 Thursday. Went to the PT in Granby today. He was surprised at how swollen my knee was. We focused on ROM exercises and he showed me how to use a regular old rolling pin to roll out my quads and relieve some of the tightness and pain. It really worked. Thursday evening was very tough! I slept in the CPM as usual, but when I woke up my knee was very tight and swollen. On top of that I had a major headache. My ROM was not progressing at all and I was getting very worried! I kept doing the CPM, extension exercises, wall slides, etc.
8/7 Friday. I decided to not go to the PT and to work on my exercises at home. I did a lot of exercises, including the CPM, but my knee seemed to be swelling up more and getting more painful. I emailed Dr. LaPrade’s PA to inform him of what is going on. Unfortunately, Dr. LaPrade is out of the country and his whole staff is off for the next week and a half. Friday night was very tough!!
8/8 Saturday. I woke up and my knee just looked terrible….very swollen and painful. I called the office to leave a message for the on call Dr. He called me back quickly and asked me to send pictures. I did and he said it looked very swollen and uncomfortable and asked if I could come back to Vail so he could see me. We packed everything up and went back to Vail. The on call Dr. was very helpful. He decided to drain my knee right away and he took out 180 cc’s of blood. He said it didn’t look infected, but he would send it off for tests. He said that was a very large amount of blood and understood why I was so uncomfortable. He said that I needed to let my knee calm down and heal until my next appt. on Wednesday…no PT at all. We decided to head home to Denver Saturday night. My knee felt better right away!! I was able to almost full extension right away. Flexion is a different story.
Obviously, I’m very worried that I can’t do any PT until Wednesday. I know that scar tissue loves blood, so that probably isn’t good that I had so much of it in my knee for who knows how long? I’m very frustrated at this point, but trying to stay positive!!
Hi Rick, I hope you are doing better. Dealing with AF for 3 1/2 years I have learned ( albeit the hard way) to listen to my instinct and my PT’s at Howard Head have taught me that it is ok to say no to exercises my knee does not “like”. Just remember that the recovery is “glacially” slow! Everybody is different of course, and in the end you will quickly figure out what your knee does not “like”. The whole process is like taking two steps forward and one back ( and sometimes even two back). Hang in there!!! Saskia
Unfortunately, I’m not doing well with my AF. My “good leg” has compensated for the AF knee and lack of ROM for so long that I know have major pain in that knee / leg and it’s making it very difficult to walk and get around these days. I won’t even consider another TKR, so I guess I’m stuck with the pain. It’s hard and I really feel for anyone that is battling this monster!! Let’s keep hoping and praying for a miracle drug to break up scar tissue!!!
I had a TKR of my left knee on Nov 18th; it was successful but I developed a blood clot which limited my physical therapy. 6 weeks post surgery I had a MUA to help break up scar tissue. Many months later after agressive physical therapy, massage therapy and water therapy, I now have arthrofibrosis. I may need another MUA or more surgery to revise the joint and remove the scar tissue. Any suggestions what I can do to avoid surgery? Any Boston area surgeons to recommend for a second opinion?
Hi Susan,
I saw Dr Wolfgang Fitz at Brigham and Womens. I saw him after I developed arthrofibrosis after TKR in 2011 and he identified the cause and did a revision in 2013. He did a great job, is a nice guy and the second surgery was such a better experience.
Another Boston knee orthopedic is Dennis Burke at Mass General. I never saw him.
Good Luck!
Susan there is no one in Boston with enough experience to do this surgery. i live on Cape Cod and have called everyone. Save the energy and go right to the best in the country,DON”T do any more surgery. If you have arthrofibrosis it is a waste of time. I wish someone told me that. I have wasted a year and a half of my life in extreme pain.Scar tissue grows right back you have to eliminate it, Good luck
Will Steadman Clinic in Vail, CO treat me I had a TKR 1 1/2 years ago and have AF. I am in so much pain my Dr won’t even address it and I can’t take much more. If not does anyone know anything about Dr. Henry Finn at the Weiss Memorial Hospital in Chicago, IL? I’ve read some good things about him and even spoke with his nurse but would like some referrals.
I NEED HELP just like all of you do.
Sandra J
I can’t speak for every doctor at The Steadman Clinic. Dr. Steadman is retired now. Dr. Singleton has taken over his practice. Both rarely–if ever–take patients with prosthetics. Dr. Steadman said that in a lot of TKA arthrofibrosis cases he’s seen, the cause is an ill-fitting prosthetic, so no matter what he does, the scar will come back because the underlying cause hasn’t been addressed. I asked him who he’d recommend for TKA arthrofibrosis cases, and he recommended the following three surgeons:
Fritz Boettner, Hospital for Special Surgery in NYC, http://www.hss.edu/physicians_Boettner-Friedrich.asp…
Ajai Cadambi, Ft. Worth, TX, http://www.texashipandkneecenter.com/mee…/dr-ajai-cadambi/
Juan “Jay” Rodrigo, Waco, TX http://www.sw.org/Dr-Juan-J-Rodrigo
Heidi Armstrong
http://injuredathletestoolbox.com/aboutarthrofibrosis/
Hi I recently had an appt. with Dr. Finn.He is amazing. I have had 4 tkr,revisions and have severe arthrofibrosis. He said he can help me. He does very low dose radiation on the knee to decrease the cells ability to form adhesions,cleans out the knee,and puts in a new knee called the Finn knee. He is suppused to have great success. I will have surgery Oct. or Nov. He has many papers,etc. he has written. Good luck
Teresa
I’ve heard a lot about Dr. Finn lately also. Have you talked to any of his patients that have had the procedure done and a new Finn Knee put in? How are they doing? I’d love to hear about some of his results 1, 2, 5 years out! This seems very promising, but I don’t want to get my hopes up too much just yet. Thanks for sharing.
Good luck Teresa! Please let us know how it goes.
Rick
Hi Rick
There was an article about Dr. Finn in a press release/Weiss Memorial Hospital,Chicago March 24 2014. Hope this helps. Good luck
Anne
Theresa….
Thanks for the posting. I have an appt. w/Dr. Finn next week for my left knee AF post TKR (year ago) and LOA (Dec. 2014). Looking forward to his consult.
Tracy
Tracy,how did your appt. with Dr.Finn go?
Theresa
Theresa,
The appt with Dr. Finn went well. He spent 45 minutes with me discussing the X-rays of my implant along with evaluating my ROM limitations. He offered recommendations for a revision surgery to elevate the scar tissue and replace the femoral component. The initial TKA was not performed correctly and Dr. Finn offered his consult to correct the problem. For those of you suffering with Arthrofibrosis with potential for revision surgery I would recommend a consult with Dr. Finn. He has corrected many failed TKA surgeries leading to arthrofibrotic conditions. Dr. Finn is located at Weiss Memorial in Chicago.
Hi,
Just wondering how things went with your knee surgery with Finn. I have Arthrofibrosis and plan to have a revision in June. would love to hear how you are after your revision from Dr. Finn. I hope you are recovering well. I am nervous but feel Dr. Finn is the best. Appreciate any feedback on how your surgery and recovery went!
Thanks,
Tess
Dear Theresa. I am having surgery with dr. Finn in march of 2016. Would love to know how you are doing today. Thanks in advance. Lenore
Hi. I had my surgery with Dr. Finn Oct. 8th. Was in the hospital for 3 days.The pain was pretty bad but it’s getting better as time goes on. before surgery I was 20 degrees extension and 80 degrees flexion. 2 months post-op I am 0 degrees extension and 115 degrees flexion. I have physical therapy 5x/week for 3 months,,but it”s definetely worth it. I would highly recomend Dr. Finn TO ALL. Good luck.
theresa
Hi Theresa, 16days till my surgery. Cant wait to walk again. Thanks for the input I am very encouraged. I will let everyone know how i did. Thanks again Lenore
Hello Teresa, I was trying to locate an update from you to see if you had your procedure w/ Dr. Finn yet? Was hoping to hear how it went, what was done, and how you are doing? I am a Right TKR, revision TKR , and a manipulation patient who suffers from severe arthrofibrosis and am looking for a solution. Thanks.
Jayne
Jayne
Please see my update to Lenore and all. Dr. Finn has helped me a lot. Good luck. Keep me posted. Theresa
Good luck Jayne I’ll say a prayer for you. Let me know how you do.
Theresa
Good luck,I’ll say a prayer for you. Let me know how you do.
Theresa
Dr. Kris Alden from the Hinsdale Orthopaedics group has come highly recommend. I saw him after 7 months of complete torture. Had my TKR in December did good until February hit a wall at rehab. Had manipulation in March Dr. got me to 130 in flex and 0 in the extension. Rehab was going well and 1 month later hot the wall again. Physical therapist was a trooper and worked me as hard as he could and tried every to get my knee moving normally. My pain and swelling has increased and I have gotten more than 2 hours of consecutive sleep in six months pain pills and don’t really do anything. Finally my Dr. So from the Hinsdale Orthopaedics group had me go see Dr. Alden and after seeing my films and looking at my file. He did a few test on my leg to see my range and how swollen,hot and hard it was. He told me he knew exactly what it was and that he’s done them and has had success. He’s from the Mayo Clinic and has a wonderful personality he’s very understanding and takes everything you say into consideration. I feel totally comfortable and can’t wait to get it done. I have to see him on the 21st. But I finally have some hope when I was at my wits end and just couldn’t understand why with all the therapy and all the hard work my knee still wouldn’t work.
Dave, what did Dr. Alden say is the problem and how is he going to try to fix it?
Rick I had a second revision done on my left knee, this time I received a total hinged replacement and he removed my MCL and PCL. The surgery took place one June 6th 2016. I am now 5 months out and the Arthrofribrosis is back and worse than ever. I saw Dr. Alden in September and he needed to consult with colleagues from the Mayo clinic. Their findings were that he has done all he can for me and that I should try water therapy for six weeks to see if that gets me more ROM.I hope this works if not I have to see him back in six weeks to see if there are anymore options.
Hi; If you do go to Dr. Finn, please give us an update. I have no idea how to go about trying to see an out of network doctor, so if you have any advice I would love to hear it. Anyone out there with a “Finn” knee, please let us all know your experience. Dealing with this since 2007 and reading about Dr. Finn and his “knee” has finally given me hope that I may some day have my life back.
Hi,I have had 2 appts. with Dr. Finn and am scheduled for o.r. in Oct.I have heard many good things about him. Hi has a very high success rate with the Finn knee. I’ll let you know–good luck
Theresa
Theresa, How did your surgery and recovery go? I have an appt with Dr. Finn this week and am wondering if you have had success with his treatment??
please see my posting to Lenore. I would highly recommend Dr. Finn at Weiss
In 2009 I had a total right knee replacement. My pt did not go very well. I even had the passive movement machine. I had two manipulations. By 2011 I was still in a lot of pain my surgeon looked at my x-ray and said it looks good and you are a hard case. he then walked out of the room. By 2011 I looked for a new surgeon. I found out the knee was put in crooked. Thus the reason for my horrendous pt. In June of 2011 I had a right knee revision. I was told up front that this may not help. Again a long pt. My range of motion was still somewhat limited but made it to 93 degrees. Still having pain I returned for my year appointment. Was told the x-ray looks good. Is that the only answer they ever have. My knee always feels warm or hot to the touch. I have been tested for infection. Nothing is there. Just went to see the surgeon again because I am in a lot of pain. My ROM has gone from a 93 to a 48 degrees. I have a difficult time even putting my socks on. I was hoping to get some answers from the surgeon. When I ask him why this might have happened he said I don’t know. Nothing else was said. Except the x-ray looks good. He said I could maybe get it cleaned out but probably only 10 to 20 degrees. Let me tell you 10 or 20 would help me get my socks on. I have been going to pt. I have gained some inches. I now am at 76 degrees. But from there it won’t budge. I leave every day in tears. Not from pain although there is a lot. But from frustration I just don’t know what to do and who to turn too. HELP!!!!!!!!!!!!!!!!!
Hello
I have (had?) Synovial Chondromatosis a very rare joint disease in my knee. After several surgeries & complications 4 years ago I am left with a knee that has lost a lot of ROM. My surgeon is great, a specialist in NYC, but at this point he says it’s most likely scar tissue and is hesitant to do anything else. Now I’ve stumbled across Arthrofibrosis and I have a bit of hope! Of course the one NYC dr. listed is not in network with my insurance & I can’t afford to see anyone out of my network. I’d like to see someone other than my surgeon and possibly get a diagnosis. Of course all these other Dr.s are very far away. I’m just happy to see that this is actually a “thing” and that there are potential treatments and that I was right not to give up hope! Now trying to find a specialist in network and that I can get to, that may be more of a challenge! Thank you!
Hi Jacqui,
I’m so sorry for what you’re dealing with. I’ve just worked with Drs. Steadman and Singleton to create a guide to arthrofibrosis. This should answer a lot of your questions. http://injuredathletestoolbox.com/aboutarthrofibrosis/
All My Best,
Heidi
I live in the Boston area, but am having trouble trying to find and make an appointment with a surgeon that has arthrofibrosis experience. I’ve contacted several excellent ones, even one on the site’s list and they won’t see me until one year post surgery, which actually will happen at the end of next month.
But I am in so much pain and since I live by myself, I have been unable to do much for a year that my existence is intolerable.
I had my TKA late last June, and immediately after surgery in the hospital and a nursing home/rehab had extreme problems with pain and not being able to tolerate use of a CPM machine and constant overheating of the knee and bad swelling. I had two manual manipulations under anesthesia last year and while the second one managed to get my flexion rom to a decent level, the knee remained swollen, painful and stiff. I was using two seperate PT’s that I’ve know for years and going twice a week for 10 months, and they could not understand why things weren’t improving.
The surgeon did not pay much attention despite all my complaining. Finally a month ago, he did arthroscopic surgery to to remove scar tissue adhesions, for which there was a lot. Unfortunately except for maybe a few days after sugery, the knee is still swelling and very painful, less than before, but still so much that I can’t walk well with stiffness and pain, I’m close to 4 weeks after the scope and things are getting worse not better.
My name is Antoinette Vigil and I live in Albuquerque, NM. Back in Oct. 2014 I tore my ACL, well in November of 2014 the surgeon reconstructed my ACL using my tibial bone. I went to pt the next day. A month after the surgery the physical therapist noticed that my knee wasn’t bending and my quadricep wasn’t firing up so I went back to the surgeon and he suggested a manipulation surgery. So I got the surgery in January of 2015 and 3 days later the scar tissue came back. I wasn’t able to bend my knee but a month ago started to notice that I was having more pain then usual. I went to another surgeon and they took x-rays and found out my right knee cap was falling low which is called patella infera. At this point I was freaking out, pissed off, and confused. He also ordered a EMG my quadricep because that too isn’t still working. I started googling scar tissue and ACL surgery and found arthrofibrosis. And it turns out that I have stage 4 because of the patella infera. My surgeon wanted to do another manipulation surgery but yesterday I went talk to him to voice what I found and my concerns. Unfortunately he has NEVER had a patient like me so he is stumped onto what to do. Living here in NM there are no doctors who are familiarized with arthrofibrosis. I found this website and started to read everyone’s stories. I know there is doctor in Cincinnati, Dr Noyes, who has studied this problem. The problem I can’t afford to travel there because my husband is a disabled veteran and we live off of a strict income, not to mention we have 3 little kids. I was hoping to get some advice, is there any help I can get? I just want to be normal again. All the normal daily activities that I once could perform I cant anymore. I can’t even walk around my house with feeling extreme pain or my leg giving out. Is there a doctor in NM I can see or just any advice? Thanks in Advance!
Antoinette, if at all possible try and see Dr.Millett at the Steadman clinic in Vail. I think the Steadman clinic is the closest to you of all AF specialists- probably a 6 hour drive. I know it’s hard, I used to drive from Missouri to see him. After two knee surgeries in Missouri with an incompetent doctor I finally found Dr Millett. I had the beginning of patellar infera , could not walk without crutches and was in a lot of pain and severely depressed after 9 mos on crutches. I had three more surgeries with Dr Millett and after each saw significant improvement. My last surgery was 9 mos ago and I am now able to not only walk about 2 miles a day ( albeit slowly) but do the daily chores and live my life again- it’s been 3 years since this nightmare started- its a hard and slow recovery process . If at all possible go and see him- it is vital to only deal with a physician familiar with AF so that you can live and enjoy life again. Saskia
Saskia thank you so much for not only responding, giving me the name of the AF doctor, but giving me some hope. I wanted to know what kind of surgeries did Dr. Milliet do in order for you to be normal again? And did you have any problems with your quadriceps? According to what I have read and researched I have the most aggressive form of Athrofibrosis and it not only affects my knee going lower but it is affecting my quadriceps. I cannot walk without a brace because my knee gives out. And also do you have Dr. Milliet’s information. I can’t find him on the internet? Thank you again for responding to me. I really appreciate it!!!
Antoinette, sorry for the delay in responding. I had my initial surgery for a torn meniscus, which should have been a very simple and easy procedure. Had it on my right knee 10 years earlier- no problem. The doc in Missouri completely missed the development of AF and put me in braces, completely isolating my knee for months- then did second surgery 4 months later because I could not walk and was getting worse- at that time he found the scar tissue, but did not inform me of what the problem was, so I went back on crutches another 3 months until I did my own research and found the Steadman clinic. I chose Dr. Millett. At the time Dr. Steadman was still doing surgeries, but he was very difficult to get an appointment with- as is Dr. Millett but I chose him (and am very happy I did). Dr. Steadman has since retired and he groomed Dr. Singleton to take over for him- both Millett and Singleton are great docs and specialize in AF. My only regret is that I was not informed by the incompetent doc in MO who had never dealt with AF- had I known I would have sought them out much sooner and I believe my recovery would have not been so long and traumatic. Early detection is the key- please go and see them ASAP, especially with Patellar Infera as there is no treatment if you wait too long. But I am sure you know this already.
Each surgery with Dr. Millett was necessary because the scar tissue had returned, although not to the degree it was there initially (before I saw him), but enough to keep me from being able to walk. I don’t think it was quite as aggressive as you describe yours. I can only imagine how you feel- for me it was a long, dark and lonely road- there is not a whole lot of support out there so it is lonely and scary at times; but I can tell you that with a great surgeon, great Physical Therapy and a lot of determination there is light at the end of the tunnel- but please seek out the right people immediately.
The problem with my quads was that because I was immobile for so long, my muscles had atrophied so much that even without the AF I could not walk. It is a long and super slow process to build up the muscles because if you do it to quickly the joint will get inflamed and inflammation equals scar tissue. Its sort of a catch 22- for someone with no patience and a former long distance runner that was the most difficult thing. I am still not able to negotiate steps (I have to do them with my right leg only- up and down) and I am at times still struggling, but I can definitely see progress- I can now walk my dog, and take care of the house by myself!!!
Physical therapy is important after you see an AF specialist- I would suggest to have the PT department in Vail draw up a program for you. Thomas Olsen, Dave Cimino, and Dirk Kokmeyer, and someone named Luke, are really great- they understand, are gentle and very supportive.
I hope I have answered your questions. Don’t hesitate to ask for support, I will be happy to share my journey and answer any questions you might have based on my experience. Please do not give up hope, but please understand the importance of getting the right help NOW. Saskia
Dr. Millett’s phone number: 970-376-8517 or 970-476-1100
18 W Meadow Drive
Ste 400
Vail CO 81657
Hi, There is a tab on the top of this page entitled Financial Assistance. Perhaps you can get some help through this site in order to see the doctor you wish to see.
My name is Antoinette Vigil and I live in Albuquerque, NM. Back in Oct. 2014 I tore my ACL, well in November of 2014 the surgeon reconstructed my ACL using my tibial bone. I went to pt the next day. A month after the surgery the physical therapist noticed that my knee wasn’t bending and my quadricep wasn’t firing up so I went back to the surgeon and he suggested a manipulation surgery. So I got the surgery in January of 2015 and 3 days later the scar tissue came back. I wasn’t able to bend my knee but a month ago started to notice that I was having more pain then usual. I went to another surgeon and they took x-rays and found out my right knee cap was falling low which is called patella infera. At this point I was freaking out, pissed off, and confused. He also ordered a EMG my quadricep because that too isn’t still working. I started googling scar tissue and ACL surgery and found arthrofibrosis. And it turns out that I have stage 4 because of the patella infera. My surgeon wanted to do another manipulation surgery but yesterday I went talk to him to voice what I found and my concerns. Unfortunately he has NEVER had a patient like me so he is stumped onto what to do. Living here in NM there are no doctors who are familiarized with arthrofibrosis. I found this website and started to read everyone’s stories. I know there is doctor in Cincinnati, Dr Noyes, who has studied this problem. The problem I can’t afford to travel there because my husband is a disabled veteran and we live off of a strict income, not to mention we have 3 little kids. I was hoping to get some advice, is there any help I can get? I just want to be normal again. All the normal daily activities that I once could perform I cant anymore. I can’t even walk around my house with feeling extreme pain or my leg giving out. Is there a doctor in NM I can see or just any advice? Thanks in Advance!
I hope I can help. I had ACL replacement back in Dec 2011. After the surgery, I couldn’t walk on it for 3 weeks by the time I took off my bandage, I couldn’t bend my knees anymore. I went to PT 3 times a week for almost 3 months. My ROM was at 37 degrees. At the time, they suggested that I go back to see my doctor to see if I can do a manipulation. So in March, that’s what I did. I went back to PT 2 times a week for 3 more months. My ROM was only at 45 degrees. I was very disappointed and cried. I started doing research online. I didn’t that I had arthrofibrosis at the time but found this website and started reading http://www.kneeguru.co.uk/KNEEtalk/index.php?board=9.0
I realized that I had arthrofibrosis. I found a doctor in Palo Alto, Ca -Dr. Colin Eakin http://www.pamf.org/dr-colin-l-eakin.htmlHe did my surgery in August and right away I can tell the surgery was different. My knee ballooned the size of a cantaloupe. I was told that it was normal because of the special way they had to do the surgery, it need to make the knee think that it has not gone through any trauma. Before the surgery, I was also told to purchase an ice therapy pack. I got mine from amazon http://www.amazon.com/Aircast-Knee-Gravity-Cooler-Large/dp/B00P3D4CLM/ref=sr_1_7?ie=UTF8&qid=1434010164&sr=8-7&keywords=therapy+ice+cooler This was by far one of the best investments I made for my knee. It’s portable and I had it on my knee consistently for the next 6 months, I even took it to church on Sundays. I was told with arthrofibrosis, I needed to keep my knee cold at all times so that the scar tissue would not grow back. I had a 3 hr drive home after the surgery and we immediately used it on my knee. I also did not go back to PT but did simple exercises at home I’ve learned from previous PT sessions to bend my knee, two in particular: the band on my foot to help bend and the standing one where you cross the good leg over the bad one and use the good knee to back push into the bad one. I also bought a standing bike. For strengthening, I used the excising ball and did squats against the wall and I also did the one where you rolled a small face towel underneath the knee so that you can push down on it while trying to lift your leg and hold. This one is done in a sitting position with your leg straight in front of you. Then I played with my patella, moving it in a circular motion making sure that the scar tissue have not and will not attach itself to my patella.
I’ve kept my ROM at 120 degrees after surgery. A year after this surgery I was able to walk normally and do light running.
It’s 2015 and I still have scar tissues and I can hear them breaking every time I bend or straighten out. But I just keep icing and biking. I’ll keep you in my prayers.
Antoinette Vigil, I’m not sure if this is still too far for you but Dr. Colin Eakin studied at this clinic in Vail, CO. http://thesteadmanclinic.com/Index.asp
They specialize in arthrofibrosis.
Can someone explain to me why the swelling around my knee and now going up my thigh is increasing? I was diagnosed with arthrofibrosis a while ago. My last surgery was 9 months ago. I don’t understand why it is getting worse.Thanks
Go to KNEEguru- you will find your answers & more, there!
My arthrofibrosis has developed in my wrist, unlike everyone else here, but I would love any suggestions. I live in Georgia. I have ulna impaction syndrome. Because of this I tore my tfcc. My surgeon repaired this in the first surgery last July. By November the scar tissue had gotten so bad that I couldn’t move my wrist and was experiencing Extensor tendinitis and having problems using my middle fingers. Surgery in December removed the scar tissue and he did a partial distal ulna head ressection. As a result I now have scar tissue preventing supination as well as scar tissue in my hand which seems to have ruptured the Extensor tendon in my pinky so that I can’t lift it independently.
Can anyone suggest a wrist surgeon in Georgia who has experience with this or a way to find one?
Thanks!
Has anyone been to Dr. Bush or Dr. Terry in Chicago il.? I was diagnosed with AF Have had 2 knee replacements and 2 revisions and manipulations on r knee.My bending is at 90 degrees and ext. at 15.The pain is unbearable. I need to find a dr. in Chicago. Thank you.
Did you ever go see Dr. Bush? I am seeing him on Friday, January 22, 2016
I have had five TKR surgeries on my left knee since Sept. 2012 at Mayo Clinic in Florida. The first one took a lot longer in surgery than expected, and then went to rehab hospital for ten days, then of for five months daily. The Rom started decreasing the second day after surgery. Then went downhill from there. The pain was NEVER under controllers or since then. Since no other doctor would see me since Mayo did surgery I had to keep making the 1400 mile roundtrip to see them and have more surgeries. I have had to go thru five at this point, and all by myself. It has taken everything I have monetarily wise and mentally. The first surgeon did another surgery in March 2013 and then. Again in May 2013, and did another revision. I went thru the same rehab and physical therapy to no avail. At that point I had used all of my savings on hotel, gas, food and doctors fees at Mayo. Then I was directed to a new ortho surgeon there, who felt like k e the pain, edema, limited mobility were due to an infection. They did 5 needle biopsies in the joint to see if anybody’s or blood was present. All were negative, and very painful. Then the last time she went BBC ad k in, exchanged some pieces and cleaned up the area. After surgery she stated that there was a great deal adhesions in. The area. The pasteurized was May 2014. Three weeks ago I was told that following the first surgery I was diagnosed with Arthrofibrosis, but everyone failed to tell me. My poo ain management doctor has had me on Methadone, Oxycodiene, Lortab, Norvoc, Hydromorophne, Hydromorphone to no avail. Even the pain doctor at Mayo said nothing will w work. What do I do now? No other doctors will vBulletin see me, having . Extremely hard time even fin d ing a rhuematology doctor to see me with t uhh e AF going on. Please help if you have any ideas. I can not work many longer, on d 9/2011.I stability due to this, can’t walk at . All. SOMEONE PLEASE HELP. I leave in Mississippi,. G of BLESS everyone, I know w uhh at you’re going thru. Thank tying our.
I have had 2 knee replacements in my right knee. The first doctor put in a replacement that was too big for me. It was a man’s knee and I am a woman. Then I went to a very good doc who took out the first prosthesis and put in the right size knee. However, I had a lot of stiffnes and pain in my right knee. I went to a pain doctor who put me on heavy doses of narcotics which made me very sleepy. I fell asleep while driving and totaled my car and broke seven ribs. I decided then that I had to get off these drugs so I detoxed off of them at The Betty Ford Clinic in Rancho Mirage in Nov. 2013. The second doctor had me go to PT for several months because I had very limited extension of my leg. The PT didn’t help so this doctor suggested I have a “revision” of my second knee replacement surgery which I had last week. I am now in terrible pain and my knee is very stiff. After surgery I had good extension but now I feel that I am losing it despite doing several exercises twice a day. So, does anyone know of a doctor in the Los Angeles area who treats arthrofibrosi?
I had right knee replacement in October 20, 2014 I have continuous pain,swelling and vice like pressure around the knee I have maintained continued physio as I cannot walk correctly. I cry a lot now as despair is setting in as my surgeon keeps telling me I will just have to live with the way things are. I cannot return to work as I have too much pain. I had infection in the begining as the emergency at the hospital I had the surgery said but my surgeon disagreed and stopped the antibiotics they put me on. A few weeks later I had infection again so my surgeon agreed with my doctor to put me on antibiotics again. Now my Dr is recommended a second opinion be gotten. I don’t feel my surgeon really has my best interests at heart as I have found her to be evasive about giving me answers to my questions. I am hoping to find a good doctor in Toronto Canada who can help me.
please help, cant find much info on arthrofibrosis of the hip
Iam a 44yro who had total hip replacement on 1/2/13,and have had several ongoing soft tissue issues (trocanteric bursitis,ilio psoas release surgery) i had the psoas tendon release on 11/19/14 and just recently got the operative report that states the surgeon found extensive arthrofibrosis in the hip capsule & surrounding area. The scar tissue was “cleaned out” and i began PT shortly after. I began to experience snapping restricted motion and very bad pain. I have been back to the surgeon 4x and he told me my body produces excessive scar tissue, he never mentioned arthrofibrosis which is in his own operative report from my tendon release surgery. I feel my hip is becoming more restricted in motion and becoming increasingly more painful. The Dr is telling me to strech at home and PT twice a week. He has prescribed nothing for pain/inflammation, wondering why the Dr. Would not tell me of the arthrofibrosis? Going to see another Dr.for IME , i live just north of Boston. In searching for info on this i find only people with TKR. Any info on the hip& arthrofibrosis would help,i feel as if tne Dr. Is ignoring the issue and the pain i am experiencing……this SUCKS.
John, Sorry you are going through this. Just a thought, but when discussing the hip and/or shoulder, you may have luck finding more information if you search the term “adhesive capsulitis”.
Sorry, Jon.
Does anyone know of Dr.and or pain management clinic in the boston area who deals with arthrofibrosis?
According the the practitioner’s section on this site, Dr. Thomas Gill, Boston, MA
Thanks for the info Christene.
Another Boston ortho is Wolfgang Fitz at Brigham and Womens, He did my revision TKR after my arthrofrosis hell. I am doing pretty good.
I tried calling dr gill. They say he does not do surgery for arthrofibrosis. Now talking to dr Finns office in Chicago . I live on cape cod. Have u found anyone to help. I can’t straighten my leg. Had a tkr and revision. Any info is appreciated.
If you have been diagnosed with Arthrofibrosis, you might as well face it, you will never be the same. There is no miracle operation or cure, no matter what any doctor tells you. I have been through it all and six doctors. With advances in medicine and technology, doctors are ambitious to suggest the only way to take care of a worn-out knee with little or no cartilage is to have total knee replacement. It reminds me of the 70’s and all the unnecessary hysterectomies that were done, and yes, I had one of those too.
I have learned to deal with my miserable knee by doing exercise. A small bike, that Walmart carries, will help keep the leg from tightening up, although this is not perfect. The bike is stationary and can be used sitting in a chair. I stopped taking any kind of pain pill, but only on your worse day, you might want an anti-inflammatory. This will loosen up the tissues and you will have less pain. Only take when you are totally miserable and not long term since it will work on your liver. Good luck to all of you who are suffering with Arthrofibrosis and know, you are not alone.
Has anyone had any success at all in dealing with this monster? It’s getting harder and harder to deal with this and no amount of pain meds work anymore (I’m currently taking Oxycontin, Percocet and Cymbalta daily). And now I’ve been diagnosed with low testosterone due to taking all of these narcotics….great, just what I need! Can anyone recommend a good support group (online or in the Denver, CO area)? I would really like to talk to others that are dealing with AF!! My wife and family just don’t get it and I don’t expect them to. I’m 47 and feel like I’m 80.
Please see my original post from January 16, 2014 for more details on my struggle with AF.
In June of 2007, I had my right knee replaced, at UW Madison Wisconsin. I went through 12 weeks of PT at Advanced Physical Therapy in Madison Wisconsin. When my PT was complete, I had 120 degrees of motion…that was really having to have him place lot of pressure on it. As the months went by, the degree of motion declined. My range of motion today is maybe 80-90 degrees. Along with the loss of Motion, the Pain has increased greatly….I am on a pain management program with Dean Healthcare..and that has to be adjusted every year. Dr. Matthew Squire at UW Hospital told me this has only happened to him 2 times in his entire carrier …and thus I am his anomaly…I REALLY NEED HELP…any suggestions
OMG I have the same thing. No one understands. I have had 2 tkr in the past 4 yrs on the same knee. 2 muas and scar tissues removed once. I only can bend 42 degrees. I just had my last one done 9/24/14. The doctor did a y cut on quad to make it longer so I couldn’t walk or bend it for 2 months. Now he says I can go back to work this month. I stand 40 a wk. I am 56 and I also feel like 100. Good luck let me know if you find anything that works.
SRY I was answering Rick. thx
Does anyone know of ANYBODY that has been successful fighting AF? I really would like to hear from someone that is winning the battle. I have no idea how to deal with the pain anymore!!
I am winniing this battle. Had a TKA followed by an arthroscopic lysis of adhesions and MUA. I think my arthrofibrosis would be considered post traumatic as I had an ACL repair done the old fashion way, a big open repair plus a couple of arthroscopic surgeries. I’ve been told by a couple of orthos that I’d be surprised if you got past 100 degrees of flexion, another told me he’d be surprised if I was able to keep my flexion (it was at 87 degrees after MUA and going down).
For the last two years I’ve been working hard at keeping my knee moving, not losing the range of motion I have and somewhere along the way I started making gains in flexion and in reducing the pain associated with this.
Some of the things that have worked for me I just made up as I went along. If there is tight tissue I can feel I try to find a ways to stretch it. And I stretch it until I win. Some prolonged stretches, some repetitive movement (100’s of times daily) The I move on to the next area, taking breaks and maintaining what I have. The pool, a pilates reformer and my stretching strap have been my best friends during this time. Everything I do is fairly gentle, there is pain involved but mainly with the prolonged stretching. I’ve also found moving your knee in many directions (repetitively) helps. Don’t just do the one directional exercises they show you at PT. Your scar tissue is binding your knee from moving in all directions. This was key for me.
Everyone with this works hard at PT, anyone who experiences the debilitating pain and loss of function would do anything to fix it. I can’t say if what I’m doing would work for others but it is working for me. I NEVER thought I’d be close to where I am today. With each band of tightness I stretch out it opens up a new one to work on. I also find taking an anti inflammitory really helps with progress. When I stop taking them (take breaks) I notice the difference with my progress. I try taking them every other day, etc as it can’t be good for my liver. Progress is so slow I barely notice it happening.
I need to work at it to maintain what I have. I’m not sure if that will ever change, now I’m working to maintain a knee with good flexion and more importantly it is much less painful.
Don’t give up, it might work. Take it one day at a time. Give your self a day off occasionally.
I’m happy to talk with anyone with details about my experience, email me.
Rick, i’m trying to stay positive! But 110% agree with you. I’m on more meds than I can deal with. I feel like an 80 yr old in a 35 yr old’s body. I wish I could run around my yard with my kids the way I used to. There are positive stories! Check out Arthrofibrosis on facebook & more insite/stories on KNEEguru. There is a lot to digest on there. Good luck!
Hi Rick, you live in Colorado, have you looked into this clinic; it’s in Vail, Co? http://thesteadmanclinic.com/Index.asp When I was in my fight with arthrofibrosis, I looked into it. They specializes in arthrofibrosis but I live in Ca. I however, found a doctor in Palo Alto who studied at their school to learn about the disease. I also found a lot of information on this website about it. http://www.kneeguru.co.uk/KNEEnotes/#.VXmvDvlVhBc I had my ACL replaced in December 2011. Had two manipulations then found Dr. Colin Eakin. After 2 years on this journey, my ROM is at 125, I can walk normally and run. Email me if you need details. I would love to try to help kklassen04@gmail.com Good luck!!
Rick, I just want to say that I don’t think family and friends ever do understand. It took me a while to realize it. But then I think we who suffer don’t understand the situation and why it is happening either. I am 45 and I often feel like I won’t be able to do fun stuff again. I hope that it works itself out though. My thinking right now is that I am going to try to force it good. Not sure how yet. I do refuse to give up. We are too young to give up. I wish you the absolute best of luck tho. You are definitely not alone.
Steadman Hawkins will not take me as a Patient due to the fact I have a TKR. Does anyone on the site know of a surgeon that will work with a person after a knee replacement?
i have gone through both knee TKR at indore ,before 2years back ,but still i am not o.k.now i haerd about ahospital at ahemdabad (gandhi nagar)i dont know all detais but you may collected from dr.dinesh shah ujjain m.oil no.is -9301137411as he was carried the TKR of his wife and that was very sucessful.it is my suggestion i am not a agent/repreentative of any hospital/co. or doctor.
Hi Lori Reed,
Don’t understand why the Steadman Clinic won’t take you as a patient due to the TKR? I thought that is what Heidi and others are talking about. I also had TKR one and a half years ago and need help!! Did you find someone to help you?
Sandra J
Sandra,
I responded to another comment above. To clarify, I was talking about the Steadman Clinic treating cases of arthrofibrosis in non-TKA cases, but my knowledge is only on Dr. Singleton’s practice.
Though Dr. Millet is a shoulder specialist, he does treat arthrofibrosis. Dr. Hackett treats is too. I don’t know if either one will see a TKA case though.
You’ll have to call up there and check. In my comment above (a response to a comment you made), I listed out the doctors Dr. Steadman recommended for cases with TKA arthrofibrosis.
All My Best,
Heidi
http://injuredathletestoolbox.com/aboutarthrofibrosis/
I am 26 years old about to be 27 soon. I had an acl and lateral meniscus tear November of last year then reconstruction January of this year. Six months of pt and struggle for Rom and multiple second opinions finally got my second surgery in July for removing scar tissue from arthrofibrosis (loa) and a mua with it. Under the table I was told my acl was misplaced and making it impossible to get full range so it was taken out. I am 2 months post op and still stiff. Had improvements after first week maybe second but after it stalled out and at times worst. Is there any arthrofibrosis experts in maryland or closeby or only in Colorado. Thanks, I wish there was someone who I can talk to who has been troughs this or is going through this
Jason,
Do a control+f and search “Heidi.” You’ll come across a comment I made earlier about seeing the right surgeon and why that’s important. Since you have a complex case, I’d highly recommend seeing Dr. Steven Singleton at The Steadman Clinic. I often tell my clients “seeing the wrong person saves you neither time nor money.”
Do you have scope photos from your surgery? Do you see this device http://www.healio.com/~/media/Journals/ORTHO/2012/12_December/10_3928_01477447_20121120_21/fig1.jpg (I know this is from surgery on a different body part…the device will be similar to the device used in knee arthroscopy) in your photos? If so, that’s a sign that you’re headed down the wrong path. That device breaks up and removes scar tissue from the joint, causing bleeding and proliferation of more scar.
Keep moving forward..
Heidi Armstrong
http://injuredathletestoolbox.com/why-i-understand/
I would highly recommend Dr Millet at the Steadman Clinic. I had 6 prior surgeries on my right and 4 on my left which left me with a frozen knee on the right and a noisy clicking knee on the left.Several surgeons worked on me elsewhere but were only able to help me improve my motion on the left but my right got worse.After one procedure Dr Millet has my right knee at 130 degrees already and it will continue to improve over time. He just did my left knee last week and its healing and smooth with no catches or sounds now but some swelling which will take several more weeks to subside. I was very depressed and frustrated over the sumeer as I have been dealing with this since May 9th. I finally had my first surgery in October and my second in novermber….I feel very happy and satisfied with my results so far…As a physician it took me over 5 months to find this site and the information about the Steadman Clinic and I only wish I had found it in the summer..Thanks to this website and youtube where Dr Millet has a video on the atherofibrosis surgery I was able to make the right choice!!!!
I highly echo the recommendation for Dr. Millett. I had been through a total nightmare with inappropriate treatment for an ACL / meniscus repair. Instead of being able to return to my sport, I was unable to walk normally and was in constant high levels of pain. I found Dr. Millett through a website, Knee Guru, and made my own diagnosis of arthrofibrosis. This was after nine months of suffering and being told, essentially, that it was all in my head and that I should work harder in PT!
Dr. Millett performed an extensive lysis of adhesions and I have been doing very well for over ten years. I also had appropriate PT for some time afterwards. Dr. Millett has written extensively in the leading orthopedic journals about arthrifibrosis. He is both a researcher and a practitioner.
I also encourage anyone to start with one of the practitioners listed on this site rather than waste time/money/incur further pain.
Jason,
I want to recommend to all Bonesmart.org. I had TKR that had aggressive scar tissue complications. At 2 months I had an MUA. It wasn’t until 6 months that I heard aggressive scar tissue and arthrofibrosis. It all gets tossed at anyone so suddenly and YES, the doctors don’t have enough time to give you to answer your questions. Bonesmart.org is a great place to network with people all over the world with knee and hip issues. They become a great support network. It is supervised by medical professionals with YEARS of experience in the field. Most people follow the curve and don’t have the exceptions. This site tends to congregate the exceptions, which is great. We need each other, too. They have a great medical library and folks to help you understand the terminology, too. Check it out. You will be glad you did!
Hi Jason, sorry to hear you got all this at such a young age. And I definitely know the struggle of having to go through this and having no one to talk to who actually understand. I myself am 27 about to turn 28. And I’ve torn my ACL and meniscus in 2013, have gotten surgery for ACL 2014 and haven’t been able to be at my normal moving point since surgery. It is now almost a year after surgery and after getting a second opinion and finding out I have arthrofibrosis I feel like this journey will not end anytime soon. I’ve gotten a corticosteroid injection in my knee yesterday. And will be starting pt at their own pt specialists, beside the pt I already had since surgery. So I will be training heaps starting next week. I do hope this all will make a change…I know my orthopedist wants to do surgery once there are no results from this corticosteroid injection. I feel lost most of the time…and it is a lonely road. Friends are supportive but they don’t understand. I can’t do much and have a social life. Even my study has to suffer from this…going from an active lifestyle and social life to being alone all the time and people not understanding my situation is hard. I’m glad I found this website and I feel good about the fact that everybody can be super supportive to ech other on here. I’m from the Netherlands and hope to be travelling to the states end this year. But besides all this I also got a DVT after surgery so that’s all so hard still.
Imke
Is it possible to provide a name of pt in Alexandria va that specializes in arthofibrosis patients. Thank you
hi
i have expected early Arthrofibrosis with full range of motion which is progressively getting worse, i was wondering what sort of exercises i should be doing if any to maintain the muscles in my leg?
I have arthrofibrosis in my right hand as a result of a slip and fall injury where I broke a bone in my wrist and radial bone in my arm. I contracted chronic regional pain syndrome and experienced a lot of swelling. After my cast came off, my orthopaedic surgeon kept saying “don’t worry about the swelling” when I complained to him my therapy was not progressing fast due to pain and swelling. I have been going for physiotherapy and Aqua therapy since April this year. Since the orthopaedic surgeon did not worry about the swelling, I now have lost the function of my right hand, can’t make a fist or grasp things properly, can’t write or type for very long. I type all day as a tech support specialist, so unsure if I will ever be able to return to my job that I have been doing for 24 years.
Dee,
I’m so sorry. Consider contacting Randy Viola at The Steadman Clinic http://thesteadmanclinic.com/dr-randy-viola.asp
Best of luck to you,
Heidi Armstrong
http://injuredathletestoolbox.com/why-i-understand/
Hello Dee I experienced the same thing what has improved my condition was surgery the swelling develops excessive scar tissue which makes joints stiff and full range motion difficult removing the scar tissue will allow more range and motion yet a long recovery and long term Physical Therapy but worth it you can return to your job make an appointment with a hand surgeon who is familiar with athrofibrosis he can help you. I had limited use of ring finger and pinky on left hand since surgery that was in November, I don’t experience the constant pain I use to have I still have some challenges ahead but overall I’m felling a lot better.
I am in the same place as you are Dee…In December I had a simple surgery on my wrist for a torn ligament…90 days later i have developed scar tissue all throughout my wrist and hand! It is very painful and i have limited use. I have now been diagnosed with scar tissue around my shoulder from an injury that was from last fall, i had a slight run in with some boards in my yard and have scar tissue that formed on my head…theses all have caused me to start researching to see what is wrong with me. i am now wondering if my struggle is arthrofibrosis?
Hi Christal, sorry to hear of your issue as well. I have Been doing extensive aquatherapy for nearly a year now as well as physiotherapy. There is a procedure called Graston where a therapist uses metal tools to scrape and break down scar tissue in the wrist and hand. It is painful. It has afforded me a bit more range of motion and a bit more use of my hand. Full recovery is unlikely, but I keep on trying! Good luck. I am from Canada.
Hi Dee, I fell and broke my right elbow in October of 2014, went to PT, Was not getting through therapy good, I had extreme pain in my right wrist, they did carpitunnel release in January 2015, I did everything PT wanted and also at home on the non PT days. I had extreme swelling and pain, I was starting to get small motion in my hand and dr sent me back to work, my PT with the hospital was over, but I still had PT available through insurance. I could not get the swelling out and got worse. I went to 2 other doctors and finally have a good one I hope. He has started me back on therapy and given me the news of having arthrofibrosis in my right hand and wrist, and don’t have motion in my right elbow. We are working soley on the hand right now. It is a constant battle and really hard. I have been on this 2nd round of therapy since April. How is your hand doing now? Do you have any suggestions that may help? I start the day out the same every day. Cannot close my hand, then with moving and working it I can somewhat close it within half an hour but need to continue the movement or I will have to start over.
I’m in Florida. Arthrofibrosis in both knees, more severe in right knee. Constant pain, burning and swelling, must walk with a walker to prevent falling. Are there any Florida orthopedic doctors that can remove this scar tissue?
I am a 58 female, who started having terrible knee pain when I was 24. I had a lateral release ( in Germany) when I was 27 which did help for a little while. I then moved to the US in my early 30s and after returned knee pain went to an old Doctor who “cleaned it out” and said I would have to have that done every 2 years. I was so despondent at that point. My husband by then got a new job and new insurance and I picked a new Ortho doctor purely by his name, lol I was living in Salt Lake City UT, but I am British, and the name Dr Bruce (Scottish) Evans (Welsh), took my fancy so that is where I went. Dr. Evans was my age and for anyone in that area he was my doctor for 20 years until I moved to WA. He works at Salt Lake Orthopedic and there phone number is 801-262-8486. I put that there because I would recommend him to anyone. The fact that the condition is incurable did not give him the attitude that we were going to sit around and do nothing. He was very proactive. We implanted sea coral to help pull out the patella to help stop it from rubbing the groove out, he tried radio therapy, oh the list goes on and on. My left knee including the German surgery and the old doc’s clean out now stands at 35 surgeries. I have no range of motion and pain is constant. I am not giving up. Above the knee amputation has been recommended for my next step. I have had 2 regular knee replacements and now I have an unusual hinged prosthesis in. Everyone has there special doctor, but Dr. Evans bless him has taken my file all over the country to medical conventions and even to England (as I said I’m British) so see if they had any ideas for him, but please call his office or if you are close make an appointment and go and see him. He does have several patients that are out of state. I am so glad I have found this site.
Are any of the specialists working with the VA? I have had two TKA done on my right knee with a total of five surgeries on my right knee. I initially tore cartilege off both femoral condyles and sheared the lateral meniscus in 2001 while on active duty. Ortho sutured the meniscus and tried microfracturing to repair the areas where the bone was exposed. I continued on active duty and finished my 20+ years as an ER/Trauma RN in the Navy, but noticed a quickening decline in my knee and increased swelling and pain with decrease flexion over time limiting my ability to perform tasks in the ER. In 2011 when i could barely walk, i had a scope done and the lateral meniscus was shredded and i was completely bone on bone in all three compartments of my knee. I suffered for six more months before i accepted my knee would never heal and had a total knee replacement. My knee never healed completely and i broke out in fevers and rashes on day three. Over the next ten months, i continued to experience full body rashes, very painful, swollen, and hot to touch right knee and extremely sensitive to the touch. At six weeks post-op i began questioning if I was allergic to my knee and was blown off by the PA and my surgeon. At 8 months post-op and no improvement, my primary had me tested and found out I was highly allergic to nickle. My knee was exposed to nickle for ten months with chronic inflmmation as well as full body systemic rashes from the nickle before a nickle free implant replaced the first one (titanium and ionized Zurconium (?)/ ceramic-like implant). Inspite of massive Physical Therapy, and trying to live a somewhat normal life, at 1 1/2 years post-op, i still have negative 10 degrees of extension and 90 degrees flexion (on a good day). The more active I am the more swelling and numbness of my knee and lower extremity. It is hot to touch, has medial/lateral instability improves slightly with an ACL brace, feels like something catches in the joint (probably scar tissue) and pain ranges from a 4-9 on a daily basis, no more than 4 hours of sleep a night even with narcotics, increases with storms and cold fronts or cold rooms, up to 3+ pitting edema below the swollen knee if I attempt to substitute teach, nursing is OUT of the question. My left knee, both hips, and back now being affected due to leg length discrepency and a antalgic gait on the right. This is a VA disability. Is there ANYBODY out there that can help???? I was a runner, swimmer, biker, hiker, nurse, teacher, and photographer and have had to give it all up. I cant get around a bicycle rotation even with the modified shortest arm on the right side due to tightness and lack of flexion. I have every symptom of arthrofibrosis and have given up on being pain free and getting a normal night sleep without waking up every 1-2 hours from pain. I came across this website and hope and pray someone can and is willing to help.
What has happen to you can not be undone. However what I can offer is a way to get you out of pain so that you can do the right exercise to become functional again.
Good Luck
Are any of the specialists working with the VA? I have had two TKA done on my right knee with a total of five surgeries on my right knee. I initially tore cartilege off both femoral condyles and sheared the lateral meniscus in 2001 while on active duty. Ortho sutured the meniscus and tried microfracturing to repair the areas where the bone was exposed. I continued on active duty and finished my 20+ years as an ER/Trauma RN in the Navy, but noticed a quickening decline in my knee and increased swelling and pain with decrease flexion over time limiting my ability to perform tasks in the ER. In 2011 when i could barely walk, i had a scope done and the lateral meniscus was shredded and i was completely bone on bone in all three compartments of my knee. I suffered for six more months before i accepted my knee would never heal and had a total knee replacement. My knee never healed completely and i broke out in fevers and rashes on day three. Over the next ten months, i continued to experience full body rashes, very painful, swollen, and hot to touch right knee and extremely sensitive to the touch. At six weeks post-op i began questioning if I was allergic to my knee and was blown off by the PA and my surgeon. At 8 months post-op and no improvement, my primary had me tested and found out I was highly allergic to nickle. My knee was exposed to nickle for ten months with chronic inflmmation as well as full body systemic rashes from the nickle before a nickle free implant replaced the first one (titanium and ionized Zurconium (?)/ ceramic-like implant). Inspite of massive Physical Therapy, and trying to live a somewhat normal life, at 1 1/2 years post-op, i still have negative 10 degrees of extension and 90 degrees flexion (on a good day). The more active I am the more swelling and numbness of my knee and lower extremity. It is hot to touch, has medial/lateral instability improves slightly with an ACL brace, feels like something catches in the joint (probably scar tissue) and pain ranges from a 4-9 on a daily basis, no more than 4 hours of sleep a night even with narcotics, increases with storms and cold fronts or cold rooms, up to 3+ pitting edema below the swollen knee if I attempt to substitute teach, nursing is OUT of the question. My left knee, both hips, and back now being affected due to leg length discrepency and a antalgic gait on the right. This is a VA disability. Is there ANYBODY out there that can help???? I was a runner, swimmer, biker, hiker, nurse, teacher, and photographer and have had to give it all up. I cant get around a bicycle rotation even with the modified shortest arm on the right side due to tightness and lack of flexion. I have every symptom of arthrofibrosis and have given up on being pain free and getting a normal night sleep without waking up every 1-2 hours from pain. I came across this website and hope and pray someone can and is willing to help.
I am 76, used to be very active until my knee accident. I am looking for an AF specialist and would appreciate any advice. I fell and landed on my left knee in April 2014. I tore my ACL and meniscus. On May 9, I had TKR at Hospital for Special Surgeryin NYC. I then spent a week at Rusk rehab, which was a waste of time as I got only 3 hours of PT daily. Then I transitioned to PT in my home area on Long Island. I was improving, although my ROM was not very good. But then I developed a large hematoma on operated leg. I forgot to mention that I am on blood thinners, so surgery is always risky for me. My knee was immobilized by the hematoma and my surgeon performed a manipulation on July 31. It didn’t work. My ROM is about 15-95. My leg is still bent. I limp. Then I started with an excellent new PT, who told me I have AF, that my knee is encased in adhesions. She recommends the Noyes Clinic in Cinn. Ohio. Anyone know about it? She says Dr. frank Noyes is a specialist in AF, and that clinic has good rehab. I know nothing about it. Please advise.
Strongly recommend Dr Millett at the Steadman Clinic…I also had AF and very bad case of it for 6 months and 6 previous surgeries…I just finished having both my knees worked on one in october nad one in november and I have had great results….you can see his video on youtube on the topic of atherofibrosis…it is excellent…
Hi Tamera,
I am fighting with the VA now because I have not been able to work since Feb 2012. I am in Chicago meeting with an AF specialist with the hopes of getting some relief from pain and supporting documentation so I can get 100% disability. I did 22 years in the AF and I think its a shame I can’t get the suppport I need from the VA. You are right, this is disability and its a struggle to do everyday activities without pain or without the use of pain meds.
Good luck with your journey
Hi.
I had surgery in January on my right knee to fix patellar maltracking. My doctor did a lateral release and medial plication to get the knee to track straight up and down. Because of an insurance mixup, I didn’t get into PT until about 3 weeks after the surgery. I was going every day for two months and gained a flexion of 15 and extension of 90. I am now going once a week (had to cut down because one of my insurances stopped), am swimming and doing many things I used to, but believe I am suffering from arthrofibrosis. I can now flex to 11 and extend to 107 on my best days, but am incredibly stiff, have frequent popping feelings and get some pain when I move. My gait is off because I can’t straighten fully. My knee will straighten fully with the contraption my PT made, but as soon as it comes off, it bends again.
So, now I have ten visits left and am wondering if I should get this surgery everyone is talking about or if there are any other options besides surgery that I can try that I haven’t tried yet. I live in Arizona, so if someone knows a doctor here, that would be helpful. My last appointment with my surgeon was a week ago and he told me to do a prone leg stretch three times a day to get it to straighten and come back in two months. I feel that it’s time to see a new doctor. Thoughts anyone?
Hi Alicia,
The really good news is you’re catching it very early.
The question to ask is, “Who is the best person to treat arthrofibrosis?”.
I recommend seeing Dr. Steven Singleton at The Steadman Clinic. I was a patient of Dr. Steadman’s from October 2011 through his retirement, and Dr. Singleton (who Dr. Steadman transitioned patients to) did my last surgery. He is exceptional. I posted below on March 28, 2014 – 4:34 pm. Read through that post to see why it’s important to see the right surgeon.
All My Best,
Heidi Armstrong
injuredathletestoolbox.com/why-i-understand/
Heidi Armstrong,
I am so thankful I found this site. I had a TKR Dec 2013, I’ve always been a very active person, not over weight so I thought this would the “fix” for my knee pain and I could get on with my life. Well I was so wrong! I went to PT 2-3 times per week and did my exercises at home but could not get past 90 degress so my surgeon said I have scar tissue and I went back to surgery 8 weeks later for a manipulation. Then on to PT 5 days for 2 weeks so I could stay on top of this, then back to 2-3 days and other days to the gym. I ended up with 130 with PT force but then developed a bakers cyst so my PT said that hurt so bad I had to back off with my exercises. Went back to Dr. who said it was not a bakers cyst it was scar tissue and wanted me to go back in and have it “cleaned out” but could not tell me that was the answer. My gut said don’t do it, that upset the Dr. so I left on bad terms with him. I have gotten 2 other opinions, one saying don’t do it the says he would but might get worse. I have lost my ROM and I’m in a lot of pain. Do you think the Dr. in Vail, CO can help me. I will do anything that will help I’m at the end of my rope, can’t take much more pain. I’ve done all the alterative things I hear about. PLEASE HELP!!!!!!
I’m 39 years old and my story is just beginning. I had a partial menistectomy in Feb 2014 to repair torn meniscus. Was home 2 weeks and developed an infection which turned out to be MRSA. Was admitted for an I&D and sent home after 4 days on oral antibiotics. 4 weeks later I noticed more intense pain and heat in the knee and was admitted in April for 10 days for a more aggressive approach of 3 more I&D’s and a picc line for IV antibiotics. Was released to rehabilitation program for 6 weeks of infusion and physical therapy. I have been home 3 days and was told the tissue removal wouldn’t be done on me because of my elevated risk of infection. I have flexion at 60% and extension of 6. I haven’t been formally diagnosed with arthrofibrosis yet, was just given the medical evaluation opinion today. I have no clue what to do now or where to go from here. Any advice?
Hi Emiley,
I’m so sorry…In what state do you live?
Heidi Armstrong
http://injuredathletestoolbox.com/why-i-understand/
Hi everyone,
I pray that everyone here find peace, comfort and most of all results. It’s not easy to be in this position I know I am but we don’t have to let it run our lives. So let us all rise above our pain and sufferings and stay strong and keep on believing that one day it will all be over. God bless you all here and let’s keep uplifting each other.
Ginger H
Hi Theresa M,
Thank you for that uplifting message. It brought tears to my eyes. I had Rt knee Jan. 9, 2014. Had a manipulation March 19th. It’s been 6 months and my ROM is only 90. My situation is a Workmen’s compensation case. After the manipulation Workmen’s Compensation only approved 10 PT days. I was totally on my ow for a month. The last day of PT my ROM was 50. I. Rehabbed myself for a month. I increased my ROM to 82. My Surgeon appealed their decision to get more PT. They gave me 9 more days. Hence today I’m at 90. I have literally been fighting for my life. I’m back at work on limited duty. By the end of day my Rt knee is swollen, stiff, and in pain. What is so frustrating is the Surgeon does not know how to deal with a patient with Arthrofibrosis and is not really interested in helping me move forward.
Hey Ginger,
I had knee pain you many years. I would like let them operate or give me medication. Check out my website i may can help with the pain.
http://www.kneerecipe.com
Hello. I did an ACL patellargraft reconstruction in april with surgery of my meniscs as well. I have just got the diagnose artrofibrosis if my knee, and cannot stretch out my knee. I have heart that there should be a good clinic for this in norway- is that true? And if Thats the case- whats the name? Thank u so much for the help. Julie
Julie,
I responded to you below, but just in case, here’s my post again:
Hi Julie,
Please send me an email to heidi@injuredathletestoolbox.com. I have the name of a doctor who can help you in Oslo.
Heidi
http://www.injuredathletestoolbox.com
Julie,
I responded to you below, but just in case, here’s my post again:
Hi Julie,
Please send me an email to heidi@injuredathletestoolbox.com. I have the name of a doctor who can help you in Oslo.
Heidi
http://www.injuredathletestoolbox.com
I am looking for a AF specialist in CT. I had ACL and MCL surgery on my left knee in November of 2013. I also had some loose body in my knee removed and some arthritis cleaned out. After the surgery I developed atrophy in my quads. I have full extension but my ROM is only about 115. If my knee is not inflamed I have been able to get to 130 with force from my PT. My OS gave me Naproxen for the inflammation and my knee feels a lot better but the Naproxen hurts my stomach. I have been diligently rehabbing my knee but I get very stiff and my knee is still swollen to the point where I can’t wear jeans. My OS practices at UCONN and says I may need to have surgery to remove the AF. I’m scared that my knee may get worse. Are there any other methods to remove AF? I also keloid easily.
Hi Nikki,
I know it’s a long haul for you, but I recommend seeing Dr. Steven Singleton at The Steadman Clinic. I was a patient of Dr. Steadman’s from October 2011 through his retirement, and Dr. Singleton (who Dr. Steadman transitioned patients to) did my last surgery. He is exceptional. I posted below on March 28, 2014 – 4:34 pm. Read through that post to see why it’s important to see the right surgeon.
All My Best,
Heidi Armstrong
injuredathletestoolbox.com/why-i-understand/
Nikki,
I am sorry that you are going thru this. I live in SW RI and developed arthrofibrosis after my total knee in 2011 that left me with +10º to 70º. I was young and active. It is a brutal thing beyond words.
I did a lot of research and I was contemplating a trip to Ohio or Colorado but I ended up going up to Boston to see a revision specialist (who was recommended by a arthrofibrosis expert) and I encourage you to either go there or to the Hospital for Special Surgery in New York where there are a number of doctors who can deal with this. It is the #1 rated orthopedic hospital in the country according to US News and World Report .
I had a great experience in Boston; I not sure about his expertise with ACL but my surgeon was Wolfgang Fitz at Brigham and Women’s and New England Baptist(where I had my revision last May.). It took a long time to get an appt though. Boston has some highly rated orthopedic programs too.
I don’t know of any AF specialists in CT. The orthopedic program at St Francis has a good reputation, I got as far as going to a DR Paul Murray, who was highly recommend by others, not sure if he only does replacements but I wasn’t really impressed with this particular doctor or his manner.
My last piece of advice: get second opinions, get a lot of them.
Good luck, I thought this was a hopeless journey and it was horrible and full of bad stuff……I was lucky that an identifiable source of my arthrofibrosis stiffness and pain was found (internal rotation of tibial implant) and now a properly aligned joint has given me my life back-3 years gone but I am still here to enjoy life again.
Does anyone know of a good surgeon to clean out scar tissue in the ankle? I had arthrofibrosis in the knee and went to dr steadman but not sure who to go to for the ankle?
Hey Nikki,
I had pain in my knee for many years. I would not let my doctor perform surgery. I have found a way to relieve my knee pain without drugs. Checkout my website http://www.kneerecipe.com
The story of my right knee replacement in 2006 and subsequent battle with severe arthrofibrosis could fill several volumes. I had never had any prior surgery and therefore had NO idea I would be plagued by scarring immediately…..despite my using CPM machine for months and extensive physical therapy. Problems started even before the replacement when I had an arthroscopy and scar tissue appeared very quickly. A manipulation did no good. Following the total replacement in 2006, I had yet another arthroscopy to remove yet MORE scar tissue and then in 2007 I had a partial revision with MORE scar tissue removed. Despite all my efforts, 8 years after the replacement every step I take is uncomfortable; I cannot stand in one place for more than a few minutes without extreme stiffness and swelling, can’t walk down stairs normally or sit in a theater seat without extending my right leg out into the aisle because it is “stuck”………my knee replacement ruined my life and am 68 years of age. The most recent surgeon who agreed to see me told me this is a “permanent” condition and that scar tissue “is like cement; once it’s there it’s there for good”…..WHEN will there be some help for patients like me???
I would never consider another knee replacement and though my left knee is not great, it will NEVER be replaced.
Carole,
Where do you live?
Heidi Armstrong
http://www.injuredathletestoolbox.com
Hi Heidi: I live on Long Island. I had my surgery at the Hospital for Special Surgery in NYC which is supposed to be one of the best orthopedic hospitals in the country. They pretty much blew me off and that surgeon told me it was a permanent condition. I have tried everything to try to gain more movement and range of motion, all maner of physical therapy, water therapy, acupuncture, and more with NO improvement. The whole leg feels like a piece of wood. I am unable to travel a long distance from home for treatment and live for the day SOME doctor will come up with an answer for me but I’m not counting on it.
Carole,
Have you heard of Fritz Boettner?
Heidi Armstrong
http://injuredathletestoolbox.com/why-i-understand/
I am a 72 year old woman. I had left hip arthroplasy September, 2013. I have since developed extensive arthrofibrosis along the anterior aspect hip joint. There does not seem to be anyone in the Washington D.C. area that specializes in this problem. Can you help?
Thank you.
Pat Haskell
There is no disrespect intended in my comment — there is perplexity. For the life of me I do not understand the logic in continuing to make people believe that the only chance they have for a cure (which at this point does not exist) for this horrendous condition is to travel to one or two particular facilities. I have read numerous remarks, diaries and blog entries on several websites about individuals who traveled thousands of miles from home, remortgaged their house, maxed out credit cards, relocated for months at a time to attend “specialized physical therapy” at “world renowned centers” manned by “arthrofibrosis experts”; yet, what I don’t see is anyone (with the exception of 2 or 3 who took it upon themselves to do their own PT at home–no clinics involved) saying they are cured.
What I do see is their arthrofibrosis recurring just like mine and the need for their “experts” to perform numerous surgeries on them, just like my OS has performed on me, constant careful PT, inflammation control, pain control, etc. Quite frankly, I don’t see any of their outcomes great enough or different enough to perpetuate this misconception. While it is true that most OS’s don’t ever see a case of true arthrofibrosis in their entire career, that does not mean that the only ones capable of treating it are found listed on several websites.
My OS never did a fellowship at the Steadman Clinic yet he has the brains and skill necessary to perform LOA’s and other procedures on me “properly with a tiny heat probe” so as not to cause massive bleeding into my joint. Is it his fault if my body goes ballistic? NO. Has he done everything humanly possible to give me the best chance at a different outcome? YES. Am I following the so-called AF rehab protocol? YES. Is he caring, compassionate, a good listener, willing to try anything to help me? YES. Did I need to travel thousands of miles from home? NO.
I think people better get a grip on reality. Are there some horrible orthopedic surgeons out there? You betcha and I saw my share; but this notion that you are doomed if you don’t go flying off to see an “expert” is completely ridiculous. There is no cure for arthrofibrosis There is not one single surgeon who can tell you that you will be cured or that you will only need one surgery or that if you follow a particular PT plan your arthrofibrosis won’t come back.
Face it folks, our body is what is causing our problem and until someone figures out what triggers arthrofibrosis and how to stop it you can fly wherever the heck you want but I have gotten the same results with my OS as they have with theirs.
Dear Christine: I totally agree with your observations about this most daunting and frankly debilitating condition. I have tried everything – including more surgery – which definitely only exacerbated the problem….it is our body’s reaction to the invasion of the surgery but WHY can’t doctors find out what causes SOME of us to develop arthrofibrosis while most people do not? I never had any surgery prior to my knee replacement so there was no way I was prepared for this outcome. I was outraged when the surgeon I saw who told me that scar tissue was like cement – Not something a patient wants to hear but unfortunately, true. If I could get even a small amount of relief from the terrible stiffness and lack of movement from my knee, I would be overjoyed. I hope that during my lifetime some genius comes up with an answer for us.
I agree with you Christine. In fact after my PT’s in Indiana with a doctor who is supposedly an Arthrofibrosis specialist but couldn’t make progress after a year and told me he could no longer see me due to no progress, I asked him “so who do I see?” He gave me the number of the Steadman Clinic in Vail and sent my records. I received a phone call from Dr. Steadman’s Asst. and was told they couldn’t do anything for me and the reason given was fear of making my scar tissue worse. It was a few months later that the woman who told me about astym gave me the number of the local therapist who did it and I went. Though lengthy due to the amount of scar tissue in both knees, their protocol helped me so much and I was fortunate the therapist is in the town I live in!
I’ve had both of my knees replaced, the left in June 2010 and the right in February 2011. Unfortunately, my surgeon didn’t explain that I have arthrofibrosis or I may have delayed having the right knee replaced so soon. I’ve had other issues that have complicated my situation. I had back surgery in June of 2013 to remove a stenosis that was rubbing my sciatic nerve. This back surgery was successful and I’m actually able to walk a little more than I had been doing. I trying to improve this each week, but I keep having problems with my knees and I have resorted to walking with a walker lately because of a soft tissue injury and pain. I also had an injury to my right knee in May of 2012. I feel if I would have been fully educated on my condition I would have been much more protective of my knees, like I am now. The range of motion for my right knee is about 56 degrees. My left knee may be around 80, probably more like 75. I struggle getting up and down off of furniture, usually having to sit on pillows to assist me in getting up. I can’t comfortably go to concerts or movies because the seating is too low to get up from. Is there a doctor in or near Florida that can consult with me to see if I would be a candidate for surgery to move this scar tissue and place me in agressive physical therapy to regain some of my range of motion to make living more comfortable? Both of my knees hurt constantly, the right being the most painful. I really appreciate any help you can provide.
Sincerely,
Karen Mullis
Hey Karen,
Lots of pain in my knees for years. I have been able to reduce my pain without drugs. check out my website http://www.kneerecipe.com
Questions:
1. Seattle area – I am looking for the BEST doctor to do arthroscopic surgery on arthrofibrosis in my right knee, after a total knee replacement.
2. And does a lot of experience doing this type of surgery, for this reason, make quite a bit of difference in its outcome?
Given the rarity of this problem, I would really like to know if a specialist who DOES THIS ALOT, will do better, increasing the odds of success?
3. And does a steroid injection or injections help break down the arthrofibrosis?
(I, too. cannot walk, fear not working, and am desperate to resolve this problem.)
Thank you
Cynthia – I would recommend you talk to Peter Mandt, Proliance Orthopaedics, Bellevue and Issaquah. He repaired my knee after ACL reconstruction in 1990 (done by a different surgeon). Back then, the standard post-surgical treatment was extended immobilization and non-weight-bearing for, IIRC, six weeks. I developed arthofibrosis and didn’t respond to manipulation under anesthesia. A year later, Peter removed a golf-ball sized hunk of scar tissue from my knee. Another year later, he relocated the patella tendon because of stricture.
Hey Cynthia,
Did you end up finding any surgeon in the Seattle area? I am also in Seattle with arthrofibrosis in my knee and was seeing if I can find someone local as well.
Hope you’re feeling better!
Elena
I am at my wits end. I have this disease and there is nobody who can help. I live in Tennessee and have had one surgery and manipulation. My leg is in a fixed position bent at the knee. For two years now I go in a wheelchair because I cannot walk nor stand for any period of time I am hurting now on my good side because that is where I steady all of my weight. I am just curious can someone help or guide me in the right path? Thank you!
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When I was 15 I tore my ACL. I’m now 17 I try to work out about but struggle with pain in my left knee. Its often swollen, constantly irritated and I even struggle with sitting in the car. When I’m standing my right knee is straighter than my left bad knee which is bent. I haven’t gotten back to running and being active like I use to be. I started doing some research and I think I must have scar tissue build up or arthrofibrosis. After my ACL surgery I went to a physical therapist who didn’t really give me the proper attention. I was late getting my knee to straighten out. I finally switched physical therapist when I realized my knee was showing little progress. My new physical therapist must have thought I was not at all diligent with exercises because my knee hardly progressed. I did do my exercises for physical therapy and more. I would love some feed back based on my symptoms because at this point I’m at a loss of what to do. I feel old and excluded out of anything active. Please help with advice to get my health back on track. And does anyone know of in specialist in Seattle ? If
Hi Elizabeth,
I’m so, so sorry for your experience. My heart just hurts for you.
There isn’t a specialist in Seattle, unfortunately. Let me explain.
In terms of true patience (severely lacking in many so-called arthrofibrosis “experts”), presence, expertise, research, rehab approach, there are two clinics in the world that are head and shoulders above the rest. There is one in the US (the other is in Norway). All of us arthrofibrosis-community folks have to ask the doctor question differently. The question to ask is, **“Who is the best doctor to take my case?”** rather than “Is there a specialist nearby?”
I tell my clients that seeing the wrong doctor saves one neither time nor money.
Treating arthrofibrosis is more like art than surgery, and many orthopedic surgeons are break/fix doctors–not artists.
DO NOT GO TO JUST ANY SURGEON. If your surgeon says he is going to “clean out” your joint, WALK AWAY!!! Clean out most likely equals use of the debrider tool. Read on.
Many (or maybe most) surgeons (except those who have done a fellowship at The Steadman Clinic) use a debrider tool to remove scar tissue. This tool cuts up and disrupts the extensive vasculature of the scar. If you have a surgical report or photos that mention a debrider or a tourniquet, you’re unlikely to have a good outcome. The bleeding caused by the debrider creates an environment for the scar to grow right back–with a vengeance. Dr. Steadman (and now Dr. Singleton) doesn’t remove the scar; he releases it using a teeny tiny heat probe that cauterizes the scar as he releases it. His goal is zero bleeding during surgery.
Additionally, the right surgery is a small portion of the big picture. The proper rehab team makes the difference between a positive and negative outcome. On scale, the body of arthrofibrosis reasearch is small, but most of it comes from The Steadman Clinic. They follow researched and tested protocols for rehab. Many other PT clinics have no idea how to properly rehabilitate arthrofibrosis, let alone answer questions when something goes wrong.
Dr. Steadman recently retired from his surgical practice. He has been working with his replacement, Dr. Steve Singleton, for quite some time. My case was transferred to him, and he did my surgery 4 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, kindness.
I cannot recommend Dr. Singleton more highly.
Don’t give up. I’m sending you patience and perseverance.
Heidi Armstrong
http://www.injuredathletestoolbox.com
There is no disrespect intended in my comment — there is perplexity. For the life of me I do not understand the logic in continuing to make people believe that the only chance they have for a cure (which at this point does not exist) for this horrendous condition is to travel to one or two particular facilities. I have read numerous remarks, diaries and blog entries on several websites about individuals who traveled thousands of miles from home, remortgaged their house, maxed out credit cards, relocated for months at a time to attend “specialized physical therapy” at “world renowned centers” manned by “arthrofibrosis experts”; yet, what I don’t see is anyone (with the exception of 2 or 3 who took it upon themselves to do their own PT at home–no clinics involved) saying they are cured.
What I do see is their arthrofibrosis recurring just like mine and the need for their “experts” to perform numerous surgeries on them, just like my OS has performed on me, constant careful PT, inflammation control, pain control, etc. Quite frankly, I don’t see any of their outcomes great enough or different enough to perpetuate this misconception. While it is true that most OS’s don’t ever see a case of true arthrofibrosis in their entire career, that does not mean that the only ones capable of treating it are found listed on several websites.
My OS never did a fellowship at the Steadman Clinic yet he has the brains and skill necessary to perform LOA’s and other procedures on me “properly with a tiny heat probe” so as not to cause massive bleeding into my joint. Is it his fault if my body goes ballistic? NO. Has he done everything humanly possible to give me the best chance at a different outcome? YES. Am I following the so-called AF rehab protocol? YES. Is he caring, compassionate, a good listener, willing to try anything to help me? YES. Did I need to travel thousands of miles from home? NO.
I think people better get a grip on reality. Are there some horrible orthopedic surgeons out there? You betcha and I saw my share; but this notion that you are doomed if you don’t go flying off to see an “expert” is completely ridiculous. There is no cure for arthrofibrosis There is not one single surgeon who can tell you that you will be cured or that you will only need one surgery or that if you follow a particular PT plan your arthrofibrosis won’t come back.
Face it folks, our body is what is causing our problem and until someone figures out what triggers arthrofibrosis and how to stop it you can fly wherever the heck you want but I have gotten the same results with my OS as they have with theirs.
My name is Theresa.
Christine you said a mouth full. I had my first knee surgery in jan of 2014 it went well for a while then my orthopedic doctor jump right on it and I had to have a manipulation in march of 2014. Like the first time it went well for a minute now I have to have a knee revision in June 2014. What I’m trying to get at is this. My doctor is so wonderful in his profession kind, caring, understanding etc…… I didn’t have to go all over the states to get help for my problem. We sat down and discuss what to do next. He tried everything under his power to make things right for my left knee. Right now I can’t walk long on that knee it hurts so bad. You are right there’s no cure only comfort and that is what my doctor has given me. We have an understanding towards each other and as I’m sad and hurting over this he is too. So have faith in your doctor especially if he or she is doing all they can do for you and for all patients. God bless you Christine.
I’m a 29 year old who has had an ACL reconstruction 3 years ago (tore the ACL playing soccer). I’ve had 2 manipulations since then, but still have a lot of scar tissue in the knee joint. My surgeon discharged me saying there isn’t much he can do. But the abnormal gait is causing me back pain, and causing other leg pain. A little frustrated because it’s hard to walk for long periods or even workout. Are there any specialists you could recommend in Toronto and/or Canada?
Thanks!
Hi DJ,
I’m so sorry about your experience. Scroll down just a tad and you’ll see my response to Anna. That will help you.
Heidi Armstrong
http://www.injuredathletestoolbox.com
Is there a specialist to deal with arthrofibrosis in Minnesota.
Anna,
To directly answer your question–There isn’t one. Read on for more. I’m doing some cutting and pasting from comments below…
In terms of true patience (severely lacking in most so-called arthrofibrosis “experts”) , presence, expertise, research, rehab approach, there are two clinics in the world that are head and shoulders above the rest. There is one in the US (the other is in Norway). All of us arthrofibrosis-community folks have to ask the doctor question differently. The question to ask is, **“Who is the best doctor to take my case?”** rather than “Is there a specialist nearby?”
It’s ***very*** important to appreciate not all arthroscopic surgery is the same. Some surgeons are not as careful as others. Myriad tools can be employed by the surgeon through the scope. Arthrofibrosis drastically changes the surgeon’s ability to visualize the joint; it also changes tissue planes. Simply stated: only an experienced (with arthrofibrosis) surgeon should tackle an arthrofibrotic knee.
Treating arthrofibrosis is more like art than surgery, and most orthopedic surgeons are break/fix doctors–not artists.
For everyone who is reading: DO NOT GO TO JUST ANY SURGEON. If your surgeon says he is going to “clean out” your joint, WALK AWAY!!! Clean out = use of the debrider tool. Read on.
Almost all surgeons (except those who have done a fellowship at The Steadman Clinic) use a debrider tool to remove scar tissue. This tool cuts up and disrupts the extensive vasculature of the scar. If you have a surgical report or photos that mention a debrider or a tourniquet, you’re unlikely to have a good outcome. The bleeding caused by the debrider creates an environment for the scar to grow right back–with a vengeance. Dr. Steadman doesn’t remove the scar; he releases it using a teeny tiny heat probe that cauterizes the scar as he releases it. His goal is zero bleeding during surgery.
Additionally, the right surgery is a small portion of the big picture. The proper rehab team makes the difference between a positive and negative outcome. On scale, the body of arthrofibrosis reasearch is small, but most of it comes from The Steadman Clinic. They follow researched and tested protocols for rehab. Most other PT clinics have no idea how to properly rehabilitate arthrofibrosis, let alone answer questions when something goes wrong.
Dr. Steadman recently retired from his surgical practice. He has been working with his replacement, Dr. Steve Singleton, for quite some time. My case was transferred to him, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, kindness.
Everyone, choose very carefully when you put your team together.
I hope some of that helps you.
Heidi
http://www.injuredathletestoolbox.com
Hello Heidi: i just wonder which clinic in Norway to refer to? I have arthrofibrosis, live in Norway and would really like to get in contact with them. Thank you alot. Julie
Hi Julie,
Please send me an email to heidi@injuredathletestoolbox.com. I have the name of a doctor who can help you in Oslo.
Heidi
http://www.injuredathletestoolbox.com
Hi Julie,
Please send me an email to heidi@injuredathletestoolbox.com. I have the name of a doctor who can help you in Oslo.
Heidi
http://www.injuredathletestoolbox.com
Most people have secondary arthrofibrosis; caused by inappropriate treatment. For those, the wrong surgeon caused the issue in the first place.
I am one of those. The proper surgeon is essential.
I highly recommend that anyone with this difficult problem search the Knee Guru site; there is a special section with tutorials on arthrofibrosis. This site saved my life ten years ago. I had a horrible experience with secondary arthrofibrosis but great outcome with a specialist about a year after the inappropriate surgery/pre and post surgical care that caused my arthrofibrosis.
Jacky, could you expand on your success and improvement and what your surgeon did 2nd time around? I had TKR April, 2014, Revision TKR in Sept, 2015 to try to improve leg extension that was -18-20 deg. During the revision surgery, my surgeon shaved more on the tip of my femur to “open the gateway” to improve my leg extension. Due to the instability of the femur after this, during the revision surgery, he had to insert a rod in my femur bone to stabilize. This was quite a surprise when I woke up from the surgery. Initially, the extension was improved, but only after 3 days, the knee bent and would not straighten. Second wk in PT after this surgery, the PT broke thru the scar tissue and from that moment the extension cont’d to improve to a measurement of -4 or 5 deg. During this time all the focus was on the extension in PT. My flexion remained at 85 deg. So in March 2015 I asked my surgeon to do a manipulation for the flexion. Came out of the manipulation procedure measuring at 115 deg. Was so excited and hopeful. Within 2 wks it began to be a struggle to get at 110 deg. It is now July and my flexion at rest is back to 85-90 deg. Pushing hard on the knee is a struggle to get to 105 deg. The extension was also effected from the manipulation procedure and has declined & is now at -10 deg. I am so angry for so many reasons. I do not want to accept that this is my life now. I routinely exercise this knee at the gym, swim and exercise in my pool. It is a daily struggle. So, I am at my last straw, I’m going to do the dynasplint extension brace during the day, the flexion brace during the evening. I saw Dr. X with Emory University Hospital, ATL recently for a 2nd opinion and he would not do orthoscopic surgery to remove scar tissue.
had total knee replacement Feb 5, 2014, now I have been diagnoised with Arthrofibrois also, and from what I am seeing above, this is not good at all. I am doing well I am told at my phyicial therapy today. That I have improved so much from last week. I dread seeing my surgeron tomorrow. I had manipulation 5 weeks after surgery. So I take it this is going to be a battle for the remainder of my life. YUCK, does this not just stink. I was a very active 59 year old woman. I have young grandchildren. THis does not say much for my ability to play with them much in the floor, etc.
I am going to continue phyicial therapy and what I need to do, in order to be able to drive my self where I need to go and back and forth to work. Hopefully I can soon start driving again, I was up to 9o bend today. Prayers for everyone in this situation.
Prayers to you as I had TKR, right knee, on 2-4-14 and at 3 weeks was doing awesome and walking without pain and now at 6 weeks have had for the past few weeks pain while standing or walking for 10 minutes or more so icing and sitting more again. I am 63 today and have a new granddaughter to arrive mid April, and I am so afraid I will still be in pain. I think mine is scar tissue related and will probably try to get in with surgeon before my appt on April 7.
I am 44 had total knee on February 4, 2014. I too suffer from excessive scarring. I had a shoulder surgery two years ago and I needed a scar release. We tried to save my knee last spring with the Oates procedure and I had scar release. I had a hop fracture in 2012 but luckily my scar tissue popped on its own. I was told yesterday he wants to operate again. Manipulation and removal of the scar tissue. It is so frustrating I am the mom of 6 my youngest is 6, I was in the gym 7 days a week and so active. I have been benched for nearly 2 years now! My therapist I love he has been torturing me though!!! I feel for you believe you me!!! He also wants to keep me in the hospital!! Which is fine at least it is quiet!!!! My calve is so sore I can not take anymore. I just can not straighten my leg, last time it was the opposite and I could not bend it!!! Good luck to you!
Ina, I am being scheduled for surgery. My doctor wanted to do it the day after I saw him but my son was graduating from military program so I could not be laid up last week. Now my doc is going away for 2 weeks so he is so backed up this week he can not get me in until the week before Easter. I could cry as the pain is steadily getting worse. I am limping now on a walker!!! Oh and my calve is killing me!!! God bless your new grand baby that is exciting. Good luck to you. I do not know why this happens to me as I said when I fractured my hip it did not happen!!!!! Good luck I will check back to see how you are doing!!! Maybe February 4 was a bad date!!!
Hi Noelle.
I understand what your going through you are not alone. I have to have surgery a left knee revision and you want to talk about the pain it’s indescribable. Can’t sleep sometimes can’t eat. I’ve lost weight and as I’m typing this I’m in so much pain that even my cane doesn’t give comfort. Sometimes all I can do is cry because at least I can take off the stress that is on me. My orthopedic Surgeon can tell you I’ve cried in his office to please stop the pain. But even through this God is still in control He don’t put no more on you than you can bare. My surgery is in 3 weeks June 17 why so long I have to wait? My doctor is book up next week of nothing but surgeries plus he have to go out of the country for a week then when he gets back he have another full week of surgeries but thank God I’m one of them. So you see we both must have patience they will be back and we will be taking care of. Noelle, this is not your fault nor the doctors fault don’t blame yourself nor your doctor. Have faith and you will come out of this walking on your own with no help at all. God bless you.
Patricia,
Dr. Steadman recently retired from his surgical practice. He has been working with his replacement, Dr. Steve Singleton, for quite some time. My case was transferred to him, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, kindness. **However,** he may take on cases Dr. Steadman wouldn’t, including arthrofibrosis post-TKR. I’d recommend calling The Steadman Clinic in Vail, Colorado.
Heidi
http://www.injuredathletestoolbox.com
I had an ACl and meniscus tear snow skiing at age 49 on Thanksgiving Day 2013. I went to physical therapy for a month prior to surgery to decrease the swelling and increase strength, but the swelling did not decrease. I had surgery on Dec. 30, 2013. I was non weight bearing for 3 weeks due to the stitch in the meniscus but started physical therapy the 2nd day post op. I could not take an anti inflammatory due to a stomach condition I had. At 6 weeks post op I was in a terrible amount of pain and was diagnosed with scarring. At 7 weeks post op of my initial surgery I had scar adhesion removal and a manipulation and was given Meloxicam. At 10 days past the 2nd surgery, the area under my knee and to the right are in terrible pain again. 3 days ago, my leg was drained and I received a cortisone shot and oral steriods. It helped for a few days. Now I’ve been told there may have to be another surgery to remove the scars. I am very active and afraid that I will have ongoing pain and a lack of a quality of life. I am also afraid of losing my job after my FMLA runs out. At this point, I have considered swimming if I could keep the pain down. Have frequent cortisone shots worked for anyone? Will a second scar removal surgery help? I have a cadaver ACL. Does anyone know if you can reject a cadaver ACL like a host versus graft response? Does anyone know if staying non weight bearing for 6 to 8 weeks after scar removal surgery will help? I’ve had several abdominal surgeries and did not form adhesions during those surgeries so I’m unsure what this is occuring if one of the main causes of arthrofibrosis is genetic predisposition to scarring. Does anyone have any information on this? I live in the middle of Kansas.
D,
Dr. Steadman at The Steadman Clinic is the best in the world when it comes to addressing arthrofibrosis. He recently retired from his practice and has been working with Dr. Steve Singleton to replace him for quite some time. My case was transferred to Dr. Singleton, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, and kindness.
Traveling to see the right doctor and PT team will save you untold money and pain. If I could turn back the hands of time, I would have left Austin immediately post-fracture and gone to The Steadman Clinic.
Heidi
http://www.injuredathletestoolbox.com
PS
DO NOT have another surgery with your current physician!!!! It’s likely he has no idea what he is doing with arthrofibrosis and is “cleaning out” your joint. I posted what’s below on this site’s home page.
It’s ***very*** important to appreciate not all arthroscopic surgery is the same. Some surgeons are not as careful as others. Myriad tools can be employed by the surgeon through the scope. Arthrofibrosis drastically changes the surgeon’s ability to visualize the joint; it also changes tissue planes. Simply stated: only an experienced (with arthrofibrosis) surgeon should tackle an arthrofibrotic knee.
Treating arthrofibrosis is more like art than surgery, and most orthopedic surgeons are break/fix doctors–not artists.
DO NOT GO TO JUST ANY SURGEON. If your surgeon says he is going to “clean out” your joint, WALK AWAY!!! Clean out = use of the debrider tool. Read on.
Almost all surgeons (except those who have done a fellowship at The Steadman Clinic) use a debrider tool to remove scar tissue. This tool cuts up and disrupts the extensive vasculature of the scar. If you have a surgical report or photos that mention a debrider or a tourniquet, you’re unlikely to have a good outcome. The bleeding caused by the debrider creates an environment for the scar to grow right back–with a vengeance. Dr. Steadman doesn’t remove the scar; he releases it using a teeny tiny heat probe that cauterizes the scar as he releases it. His goal is zero bleeding during surgery.
Additionally, the right surgery is a small portion of the big picture. The proper rehab team makes the difference between a positive and negative outcome. On scale, the body of arthrofibrosis reasearch is small, but most of it comes from The Steadman Clinic. They follow researched and tested protocols for rehab. Most other PT clinics have no idea how to properly rehabilitate arthrofibrosis, let alone answer questions when something goes wrong.
Everyone, choose very carefully when you put your team together.
I am a 47 year old who developed post traumatic arthritis after twisting my right knee severely in april 2013. Ultimately I required a right total knee replacement on December 10th 2103. Almost immediately after surgery the knee joint was extremely tight with intense pain in the thigh muscle above the knee, almost like a band was squeezing this muscle tight. Now 2 and 1/2 months later, and 2 manipulations later, the pain and stiffness remains. The surgeon is able to bend my knee to 140 degrees under general anesthesia, but afterwards I can’t get any more than 90 to 95 degrees. I have no life at all now. I can barely put my own socks and shoes on. I can’t even think about working and am worried about losing my job. I need help sooner rather than later. I reside in Erie, Pa. I am hoping that there is someplace within reason that I can go to for help. I know I can’t live with this pain and misery forever.
Ray, did you ever find a good doctor? i also live near Erie
Hi, so relieved to find this site! My husband had ACL surgery three months ago and manipulation one month ago but is still stuck at 10/110 degrees. Do you know anyone in the San Francisco Bay Area who could help us?
Hi All, I wanted to pass on some information I received recently that might help all of you on this site. I had a TKR done in June of 2013 my ROM was about 30, and then a manipulation done in August 2013 at the time my surgeon told me that was all he could do for me. I took his statement literally, and began my search for more help because I was only able to reach 110 degrees a couple of months after manipulation. I was still in quite a bit of pain that I was having my primary care Doc help me with. I got on this site and noticed Dr. Steadman was listed, I was a patient at the clinic in Denver for about 14 years. I made the call and was referred to an arthritis specialist and another Total Joint Surgeon in Denver. To make a long story short the arthritis specialist could not help me because I was a TKR patient and the other Joint Surgeon could not help either, his goal was to find something else wrong with me and he did not explain why he couldn’t help me. I was frustrated, made a call to my original Surgeon and found out how stupid I have been. He meant he could not do anymore for me at that time, he can help me when it has been one year post surgery, they wait because of the risk of infection. He has several Doctors in his practice that are specialist in Arthoscopic Surgery WHICH IS ALL YOU NEED,, there truly are no real specialist in Arthofibrosis at least not that deal with TKR patients. My point is that if you have a clinic in your area that serves all areas of Orthopedics they most likely have a person who is experienced in removing scar tissue through Arthroscopic surgey. I can’t speak for how things are done when you have other surgeries but I would think it would be very similar, remember every time you have surgery you will be at more risk for more scar tissue so be selective. I really hope this helps some of you. and keeps you from potentially wasting alot of time and money. I will post what I find out in June.
Lori, and those looking for information on choosing a doctor:
In my personal and professional (research as well as working with clients) experience, seeing the wrong doctor does not save one time and money.
It’s ***very*** important to appreciate not all arthroscopic surgery is the same. Some surgeons are not as careful as others. Myriad tools can be employed by the surgeon through the scope. Arthrofibrosis drastically changes the surgeon’s ability to visualize the joint; it also changes tissue planes. Simply stated: only an experienced (with arthrofibrosis) surgeon should tackle an arthrofibrotic knee.
Treating arthrofibrosis is more like art than surgery, and most orthopedic surgeons are break/fix doctors–not artists.
For everyone who is reading: DO NOT GO TO JUST ANY SURGEON. If your surgeon says he is going to “clean out” your joint, WALK AWAY!!! Clean out = use of the debrider tool. Read on.
Almost all surgeons (except those who have done a fellowship at The Steadman Clinic) use a debrider tool to remove scar tissue. This tool cuts up and disrupts the extensive vasculature of the scar. If you have a surgical report or photos that mention a debrider or a tourniquet, you’re unlikely to have a good outcome. The bleeding caused by the debrider creates an environment for the scar to grow right back–with a vengeance. Dr. Steadman doesn’t remove the scar; he releases it using a teeny tiny heat probe that cauterizes the scar as he releases it. His goal is zero bleeding during surgery.
Additionally, the right surgery is a small portion of the big picture. The proper rehab team makes the difference between a positive and negative outcome. On scale, the body of arthrofibrosis reasearch is small, but most of it comes from The Steadman Clinic. They follow researched and tested protocols for rehab. Most other PT clinics have no idea how to properly rehabilitate arthrofibrosis, let alone answer questions when something goes wrong.
Everyone, choose very carefully when you put your team together.
Heidi
http://www.injuredathletestoolbox.com
Hi Heidi,
I agree when you said if they want to clean it out run for your life. I had this doctor (not the one I have now) had it cleaned out I didn’t know no better I was in pain but when he cleaned me out it did not get any better it got worst because he took out all my cartilage the little bit I had. My doctor now he would not consider doing that he said that makes it worse. So yes you are right.
Hi Heidi,
I have decided to take your advice and at least make an appointment with Steadman Hawkins, I live in Evergreen so I am not far from them.
I had decided to give my knee some more time to hopefully recover on it’s own but it seems to be getting worse in the last month rather than better. I will let you know how the appointment turns out.
Thank you for posting your experiences.
Hi Lori
Like I always say have faith and trust your orthopedic Surgeon if he or she is a good doctor then give them the benefit of the doubt that they know what their talking about and know what you need.
I had arthroscopic surgery to remove scar tissue in my knee after TKR. The scar tissue all grew back and is now worse than before giving me less ROM.
Sarah,
Proceed with caution regarding Lori’s advice below. Read my response for a more complete comment.
Dr. Steadman at The Steadman Clinic is the best in the world when it comes to addressing arthrofibrosis. He recently retired from his practice and has been working with Dr. Steve Singleton to replace him for quite some time. My case was transferred to Dr. Singleton, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, and kindness.
Traveling to see the right doctor and PT team will save you untold money and pain. If I could turn back the hands of time, I would have left Austin immediately post-fracture and gone to The Steadman Clinic.
Heidi
http://www.injuredathletestoolbox.com
Hi Sara, it’s been more than a year I hope your husband is doing much better now. If not, I hope this helps. I had my ACL replaced and developed arthrofibrosis. After 3 manipulations from my old doctor, I started looking and found Dr. Colin Eakin. He’s located out of Palo Alto, Ca.
http://www.pamf.org/dr-colin-l-eakin.html He was great and understands it. Most orthopedic doctors don’t know how to help stop the scar tissues from coming back. Email me if you need more details. I would love to be of some help kklassen04@gmail.com
I have suffered from arthrofibrosis since my total knee replacement in July of 2006. After an arthroscopy 2 months post-op, stiffness got worse and I was unable to bend my knee more than barely 80 degrees. A partial revision was done the following year and even more scar tissue excised but more scar tissue formed almost overnight again. The stiffness I suffer with is often unbearable but I have been told (by a surgeon no less) that “scar tissue is like cement; once it’s there, it’s there for good”. I PRAY that someone will come up with a solution to help patients like me. I am unable to do many things I did before my knee replacement and would never consider doing the other kinee. Has anyone had any luck or relief? I have tried just about everything, acupuncture, water therapy, massage therapy, 2 years of physical therapy…..all to no avail.
You must call Dr Finn in Chicago. He is our only hope!
Help!!
I am seeking all input and help that I can find, I have had 3 Left Total Knee Replacements and 6 Surgeries over the course of 3 years, and I am still not able to bend or straighten my leg and experience significant pain. My issue is arthrofibrosis.
I currently have another Total Knee Replacement scheduled for March, this time the plan is to remove the Posterior Cruciate Legimate and all surronding scar tissue.
Has anyone experienced this and what was the result?
Thanks
Dave
having had double tkr 2 years,5 months ago,i have full range of motion in both knees but i am experiencing severe stiffness and pain in both knees.the condition is 3 times worse than before i went in for surgery.surgeons have run every concieveable test and have concluded,although they cannot prove, that i have arthrofifrosis.all of my personal research,including this site,states that af causes SEVERE restriction on range of motion.if anyone can throw some light on this problem,i would be very gratefull.my main question is can you have af and still have full range of motion.
While arthrofibrosis does, in numerous instances, cause severe restriction of ROM, there are some people with good ROM suffering from this condition. If you visit http://www.kneeguru.co.uk and look under the section entitled SOFT TISSUE HEALING PROBLEMS…..ARTHROFIBROSIS you will be able to read posts from people suffering with this who have/had good ROM.
Heidi! thanks for the information I am in the exact same boat. My surgery that was originally scheduled with dr. Steadman has now been handed off to dr. Singleton. I am very nervous, as I have not met him and I felt very comfortable with dr. Steadman and his explanation of how to treat my scar tissue. how did your surgery and recovery go? Thanks again for the post!
MPM,
You can exhale. Dr. Singleton is great. You’ll like him. His a great surgeon and a great person. My recovery is going well. Slow and steady wins the race.
Heidi
http://www.injuredathletestoolbox.com
I was 48 I had my first total knee replacement in 2009 and 2010 and again in 2013 had two more surgeries before that in my early twenties I’m in pain 24/7 my doctor wouldn’t listen had to go see another doc and I have a allergy to nickel mental so he went back in Jan 16 2013 still in pain looking at my op report I see I have arthrofibrosis please help I don’t know what to do at this point if u know any doc in San Diego area thank you very much will be 53 in June if I had known this would have never had it done thought I would be out of pain
Hi, I’m so happy I found this site! I have had a RTKR and revision RTKR x 2, the last being six weeks ago in the past three years and only 48! I have apparently too much scar tissue which forms very quickly after surgery and my surgeon said that when he went in this last time the scar tissue was all around my prosthesis. I’ve had manipulations after the last two surgeries but so far I’m ok, he wants to check again in six weeks as the next six weeks as all sorts can change in that time. The pain I have suffered for the past ten years, especially the last five years has been immeasurable and no amount of main meds make a difference. It’s so good to read that there is a name for this excessive scar tissue! I thought I was strange and the only one to experience this. I just wish that at my age I didn’t have to have so much pain, it effects the whole of your life and I’m extremely lucky to have a wonderful, understanding and very helpful husband. I was going to ask my surgeon about this condition when I see him again in six weeks and see what he says. I wonder if it’s as well known over here in Australia? Thanks for listening to my rant x
I am in the same boat as u re pain with scar tissue pls csn we catch up and discuss this pls sent email. I live in Adelaide SA. Thanks
Hi Tracey, I’m from Sydney. I was fortunate after seeing 3 surgeons with no idea and walking out and not returning to find an excellent one who could identify my problem as AF. I was lucky, my logic was if I went in fit to the first surgery and came out that disabled how would I come out better from the next. One wanted to undo the first surgery, ACL Reconstruction, and IF all went well do a 2nd to put it back again. Another wanted to clean the tissue scarring out. Dr Tan, an Australian doctor at St Vincent’s Private hospital was a godsend to me. He was the first to order more tests before stating what he thought( though he already knew). He altered my PT treatment . I still suffer from the pain and problems of AF and the results of it, including Patella Baja, osteoarthritis etc but at least Someone could tell me why and suggest treatment. Unfortunately it was misdiagnosed for too long.
Lynn
How did the doctor alter your therapy. I too have AF but in the ankle. So debilitating I would like to know how you were treated differently
GF
http://globenewswire.com/news-release/2014/01/29/605688/10066054/en/Dr-Richard-Steadman-to-Retire-From-His-Surgical-Practice-at-The-Steadman-Clinic.html
The opinions expressed are strictly my own and are not intended to offend any person or group.
I have had 7 surgeries in the past year 2012-2013 all on the same knee. I have seen 6 doctors trying to find a treatment for Arthrofibrosis. The lists of doctors I have seen include the Mayo Clinic, Rothman Institute, Steadman Clinic, and various other orthopedic doctors. I have another surgery planned for next week to help with the pain of AF.
We all face the same problems but we all experience this horrible condition in different ways. We are dealing with the death of a lifestyle we once had and trying to find a solution to regain the lifestyle we lost.
After reading blogs and talking to the doctors all over the United States there are little to no options we have available to us. From a layman’s prospective unless you are diagnosed in the early stages with this condition there is almost nothing that can done. You never read about someone having Arthrofibrosis for some length of time and posting they were cured or no longer have the condition because of some miraculous treatment or surgery (if I missed this please let me know as soon as possible). As I understand it and have experienced it the more procedures you have on your joint including manipulations and certain types of physical therapy results in more scar tissue build up. By chasing the lifestyle we lost we are doing more damage to ourselves.
Because we are few in number compared to those that have a positive experience and because we do not speak as one voice to groups such as the American Academy of Orthopedic Surgeons there is no urgency or focus on this condition.
We must force this issue to the fore front. We must create awareness. We must find a way to gather as one. I would like to suggest we create a national chapter to deal with all the issues we face.
There will be a great deal of heavy lifting needed to build a national chapter. I am not married to one way of getting things done. I just want to get things moving. My only goal is to start an initial discussion on a national chapter and see where it may take us.
If anyone has an interest in working on developing this initial concept please contact me @arthrofibrosischapter@outlook.com
Does anyone know if ultrasound (not Tens unit) helps to break up arthrofibrosis? Thanks, Linda
I have torn both ACL right one 9 years ago and suffered arthrofibrosis but fairly mild and with PT manipulation of patella (not pushing it with therapy) I recovered 100%. I tore my left ACL left this time (surgery June 2012) and again developed arthrofibrosis severe this time and have had a second surgery for debridement (October 2013). Because of the issues I have plantar fascitis of the right leg due to my abnormal gait. My PT is amazing. He gently manipulates the patella 2/week for about 30 minutes each time (through all facets of the joint- absolutely no forcing it to bend), I use a Dynasplint at night and I use a total gym at the lowest level for motion 25 minutes per day (squats). I have gone from originally 80 degrees to 120 degrees (cold) and 130 degrees when massaged (not as stiff). I am tall so my gait is not completely normal yet but much much improved. It is a long road and no one who has not had arthrofibrosis does not really understand how painful and debilitating the disease is. I do not know if I will make it back to any activity beyond walking and cycling again but at this point walking is good. Good luck to all.
Linda,
I have tried everything, including ultrasound therapy. My AF is in my hip. Nothing works, and at this point I have been told by 4 orthopedic surgeons, including the chief of Ortho at Mayo, that it was as good as it was going to get. My answer is no, ultrasound did nothing for me.
No I am 100% sure it doesn’t. I had ultrasound before diagnosis with AF and it did nothing. I’ve never heard of it as a treatment for it. You need something much more ‘aggressive’ but controlled than this. Like The Graston Technique or a PT experienced in arthrofibrosis. If you’re interested in reading about my own history with AF, it’s all on the Kneegeeks website. My username is mum2xl.
Hi Lori
I don’t think so because I have plenty of ultrasounds and it did not break up mine. Ultrasounds let you see up close the problem(s) of that given part. The doctors can tell whether or not a problem is there. I hope that help you. God bless. But if you find out that it do tear them apart please let me know.
Yes ultrasound is supposed to help. I currently get it 3x a week. Definitely doesn’t keep me from building scar tissue but maybe keeps it from building up so fast. I am told it changes the cell structure of the tissue. I am still in progress so I can’t say it absolutely. That is the idea though.
First let me say I am not a surgeon. The opinions expressed are strictly my own and are not intended to offend any person or group.
I have had 7 surgeries in the past year 2012-2013 all on the same knee. I have seen 6 doctors trying to find a treatment for Arthrofibrosis. The lists of doctors I have seen include the Mayo Clinic, Rothman Institute, Steadman Clinic, and various other orthopedic doctors. I have another surgery planned for next week to help with the pain of Arthrofibrosis.
We all face the same problems but we all experience this horrible condition in different ways. We are dealing with the death of a lifestyle we once had and trying to find a solution to regain the lifestyle we lost.
After reading blogs and talking to the doctors all over the United States there are little to no options we have available to us. From a layman’s prospective unless you are diagnosed in the early stages with this condition there is almost nothing that can done. You never read about someone having Arthrofibrosis for some length of time and posting they were cured or no longer have the condition because of some miraculous treatment or surgery (if I missed this please let me know as soon as possible). As I understand it and have experienced it the more procedures you have on your joint including manipulations and certain types of physical therapy results in more scar tissue build up. By chasing the lifestyle we lost we are doing more damage to ourselves.
Because we are few in number compared to those that have a positive experience and because we do not speak as one voice to groups such as the American Academy of Orthopedic Surgeons there is no urgency or focus on this condition.
We must force this issue to the fore front. We must create awareness. We must find a way to gather as one. I would like to suggest we create a national chapter to deal with all the issues we face.
There will be a great deal of heavy lifting needed to build a national chapter. I am not married to one way of getting things done. I just want to get things moving if there is another demand. My only goal is to start an initial discussion on a national chapter and see where it may take us.
If anyone has an interest in working on developing this initial concept please contact me @arthrofibrosischapter@outlook.com
Is this me? I asked my OS about it on December 27th and he didn’t think so, but I do……there has got to be an explanation for it. I had torn Menicus ( lateral) and everything else other than ACL during High School Basketball. Been fine all these years, very active on water, snow and still basketball at 46 years old. I was actually kneeboarding in May of 2013. On May 31st I stepped in a hidden hole and my leg literally felt like it exploded. The swelling instantaneously went from my hip to my toes. MRI showed torn medial meniscus in which orthroscopic was performed July 1st. When I went back for two week check up I told the doctor something wasn’t right, the leg was locked up. He told me there was no was and go to PT, which I did. The leg was horribly painful and started locking up to the point the patella would slide to the inside and PT would stop for me to unlock it.
Took reports from PT back to Doctor showing where there was something wrong and they felt it was something they couldn’t address. Doctor refused to read or look at report, so I found another doctor. One X-ray and the new doctor went literally crazy. The ACL had been torn the entire time causes the tibia and femur bone to cut grooves in each other. I had asked for amputation on numerous occasions being told the pain was in my head. This pretty much destroyed it causing me to have a TKR. This leg had been frozen at 66 degrees flexion for months, so after the TKR it was still frozen which lead to a Manipulation under Anesthesia (MUA) Very painful also. I now have 95 degrees flex, but the scar tissue in the medial area makes me break out in sweat, painful to stand up from sitting, sleep is miserable and the inside is so tender to touch that a pillow is always between my knees. I am 4 months post op TKR and 3 months post op on MUA. What do you think? I just want it cut out or cut off at this point. I’m almost 6 feet tall and my legs are long so by the time they have rested a while ; standing up is like being stabbed on the inside on my knee. I can’t even speak to anyone or answer the kids after I stand because of trying to catch my breath from the pain.
I had surgery for a total knee replacement on April 1, 2009 just before my 59 th birthday. The day before was the last day of my real life, I rode my horse for the last time and had a normal great day. My prognosis for total recovery from the misery of knee pain was great. When I woke up from surgery I was a totally compliant patient anxious to experience a life without knee pain. From the moment I started PT the next day, I knew something was wrong. After 120 PT sessions and no explanation from my othropod, they said they couldn’t do more.,I went to Philly to a great orthopedic there for a second opinion and he said I had a long hard road ahead. I finally got on the Internet and found a name for this condition. Arthofibrosis. When I found the website thekneeguru, I found a lot of answers to my many questions. Honestly I was totally sad and disheartened. I did find the names of recommended orthopedic docs and I ended up at Steadman-Hawkins Clinic in Vail, Co. I was lucky enough to see Dr. Steadman who told me outright that I would never walk the same again and that I should have been directed to them much earlier in my process, at about eight months instead of them16 months out. When I told him my doctor wanted to,replace my knee again he could barely contain his contempt device. He told me to never, never consider any replacement again or I could end up in much worse shape. Long story short, this world famous surgeon(you can see an interview with him on Charlie Rose if you google it) agreed to give my leg a try with arthroscopic surgery. While the surgery became impossible to accomplish as he got into my knee, he did a manipulation and I stayed at his clinic for a month long PT marathon with his truly upbeat, expert team. They could not have been more professional and hopeful. You work twice a day, everyday for many weeks. His situation is unique…a doc who comes into PT to see how you are doing. Ultimately they got me able to walk much better, but my knee is still bent. After losing weight, I improved a bit more. There is absolutely no cure for this cursed disease, but the people at Steadman-Hawkins got me moving again. Yes, I have pain every day of my life but it is pain I have somewhat learn to control with OTC drugs and icing. I battle depression and see a shrink. My husband is most understanding of all my physical woes but I am convinced that if I hadn’t found Steadman-Hawkins, I’d be in a wheelchair for life. This is no picnic, but I have a little bit of my life back. If you can afford it, go there for an evaluation. No one will lie to you about your condition. No one will look down on you either although most of the patients are Olympians, professional athletes or wealthy foreigners. You’ll be just as special to those people.
Hi,
The last day of MY normal life was in July of 2006……just after my 61st birthday. I can honestly say I have not had a good day since. I, too, knew there was something wrong when I could not bend the knee enough to walk normally no matter what………….three months post-op they decided to do an arthroscopy to remove huge amounts of scar tissue to NO avail. It only got worse. Then the following year a partial revision was done with the same results. My question to the surgeons at the Hospital for Special Surgery was: “why have doctors NOT been able to find some way to avoid having this terrible condition happen in the first place?” Is there nothing they can do to inhibit excessive scarring? The stiffness I feel in my leg is horrible and never EVER gets better — only worse as the years go by. I am totally disgusted and I would never consider having my other knee operated on. Good luck to all my fellow sufferers.
Carole, I had 5 knee operations beginning in 2005 (double tkr at Northern Westchester Hospital in Mt. Kisco, NY) and the result was terrible AF in BOTH knees. I went to Hospital for Special Surgery and had Edwin Su who discovered one spacer was too large and replaced it and did an MUA on the other knee. In 2008 I had blood work which indicated I might be sensitive to one of the components so Dr. Su did a revision 5 months apart on each knee as a last resort but no luck. I just wrote up my long experience and want to say Dr. Su did excellent revisiions; the fault is, I believe in our brains overhealing; not knowing when to stop making scar tissue. the good news is an Indiana Doctor (Dr. Sevier) developed a physical therapy called Astym that uses acrylic tools to (in my case) gently break down excess scar tissue. his protocol for me was to be gentler and only treat once a week instead of twice a week and do this for 2 months and then rest for 2 months. And see how I did and repeat. I have been doing this off and on since 2011 and I can do much more than I ever could before the Astym. I am NOT perfect, but the level of pain is far less and I can do things I couldn’t do before. I don’t want to give the impression that I am perfect because I’m not and it’s not possible to break down all the scar tissue, but my rom went from 40 to 72. My knees once looked like bowling balls with the skin stretched terribly and now now it’s loose and much more normal looking. I’m on pain medication but cut the amount in half. If you want to check Astym out, to to http://www.astym.com and you can find a lot to read, you can call them toll free, and you can email them. Their response is excellent! I went from wondering how I was going to get through the rest of my life with so much pain to missing my normal knees but able to do much more! I am still going from time to time for treatment and do exercises.
P.S. Carole, I wanted to add that I got my bad knees from excess cortisone shots from fluid build up from Graves Disease when I was in my early 20’s. The OS I was sent to kept draining my knees and injecting them with cortisone and my knees crreaked ever since and just got worse.I don’t have arthritis anywhere else.
I am a PT practicing in NJ and looking to refer a patient with severe arthrofibrosis to a specialist in the area (or out if necessary). She is s/p TKA and revision arthroplasty with manip after the primary TKA and an OPA debridement before the revision. Total AROM -10 to 85 and not functional! Healthy, active, young 60yo with total loss of quality living! Appreciate any thoughts!
Hi Erin,
Dr. Steadman at The Steadman Clinic is the best in the world when it comes to addressing arthrofibrosis. He recently retired from his practice and has been working with Dr. Steve Singleton to replace him for quite some time. My case was transferred to Dr. Singleton, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, and kindness. Dr. Steadman usually didn’t take TKR cases. **However,** Dr. Singleton may take on cases Dr. Steadman wouldn’t, including arthrofibrosis post-TKR. I recommend calling The Steadman Clinic.
Heidi
http://www.injuredathletestoolbox.com
After multiple surgeries and extensive PT resulting from a knee injury suffered when I was 17, I had a TKR in October ’08. I struggled to regain my ROM right after the surgery. My knee was very stiff and very painful and I was stuck at 90 degrees flex with limited extension. This was very frustrating because I didn’t have an issue with my ROM before the TKR and I didn’t even realize it was a possible outcome. Had open surgery 2 ½ years later by same OS to remove a lot of scar tissue, but it was a short term fix, even though I started PT the day of the surgery and pushed it hard. I could feel the scar tissue slowly returning.
Fast forward to present and I’m stuck at 90 degrees flex and limited extension (+7-10) with constant pain and stiffness again. This battle with Arthrofibrosis (it’s nice to at least have a name for it now) has dramatically changed my life and it’s a daily struggle….one that I feel like I’m losing. I feel disabled and I don’t like it!! I am so glad that I found this website – I now know that I’m not alone!
I really wish my OS would have referred me to an AF specialist after the first surgery!! Now that I’ve learned about AF, I’m very worried that it might be too late to “fix” it. I’m going to see an AF specialist ASAP.
Has anyone had any success at all in dealing with this monster? It’s getting harder and harder to deal with this and no amount of pain meds work anymore (I’m currently taking Oxycontin, Percocet and Cymbalta daily). And now I’ve been diagnosed with low testosterone due to taking all of these narcotics….great, just what I need! Can anyone recommend a good support group (online or in the Denver, CO area)? I would really like to talk to others that are dealing with this BS!! My wife and family just don’t get it and I don’t expect them to. I’m 47 and feel like I’m 80.
I am 41 and had a TKR October 22, 2013. I was seriously injured at Wal-Mart during black Thursday 2012 by a trampling. I had a scope in February 2013 that did not work for a meniscus year. Since then I have been diagnosed with arthrofibrosis of the knee and cannot seem to get past a ROM of 75. I have recently gotten a brace to make my knee bend. I am having severe pain in my lower right back and hip and it feels like my thigh bone is going to snap in half whenever I have therapy or work it at home. I don’t know what to do and am becoming so depressed and list. I am so written or when doing anything.I am in Memphis, TN. I had a manipulation under anesthesia back in November and the Dr could only get my knee to 90 degrees and said it was the stiffest knee he has ever seen..any suggestions on what I can do to help..I stretch all day every day in one way or another. When I sit with my knees bent in a chair my foot goes numb..I feel like I am going crazy. I can’t sleep at night because I can’t get in a position where I dint ache..please help. I am running out of money and hope.
Is there anyone in the Los Angeles area who knows what they are doing to treat arthofibrosis? I am desperate and really can make the trip out to the midwest.
Ondrea,
Were you able to locate an MD arthrofibrosis specialist in the Southern California area? Please let me know who you consulted with since I have a similar problem.
Thanks,
John
I am a 57 year old woman who had a TKR in January 2015 on my right knee. I have had limited flexion for many years due to MCL surgery and partial meniscus repair 37 years ago. At the time of the TKR, I had arthritic spurs, a tear on my meniscus horn, was bone on bone (diagnosed with osteoarthritis) and a golf ball-sized cyst on the back of my leg. After TKR, I had severe pain, not only in my knee and lower leg, but also in my ankle and foot (this ankle was reconstructed 15 years ago, but never had much pain before the TKR). The ortho let me have TKR outpatient surgery in which I went home after 20 hours with a nerve block still in effect. I had a blood drain and the PT who did my eval 3 days post op gave me exercises for home, but wanted the drain to come out before proceeding.I also experienced sever stabbing pain on my MCL surgery site and my mom went into the hospital 10 days after my surgery and passed away. The only time I could sleep for longer than an hour was in the CPM machine (which I kept for 6 months) because ortherwise, I felt my leg was in a vice grip at night. I had a hard time doing the exercises due to pain and ended up getting MUA 3 months post op. To avoid writing for ever, I will skip all the details in between the MUA and now. My doctor was frustrated and believed that I wasn’t pushing hard enough so he sent me for a second opinion. My new doctor has diagnosed me with arthrofibrosis and synovitis and wants to do another manipulation along with steroids and prolonged nerve blocks to help me go full board with PT for 5 days a week. He has had me back off on exercises (only once a day, instead of 3 xs) I have about 60% less pain, 40% less stiffness, and the swelling decreased almost 2 cm. Unfortunately, my flexion has decreased from 115 to 105 passively and from 105 actively to 95.
I believe I need to see another doctor who understands and has expertise in arthrofibrosis so he can advise me what to do next. The doctor I’m seeing now believes I’m prone to scar tissue and if he does LOA surgery, I could end up even worse off. I’m in the San Diego Area and can’t seem to find a doctor here. Please help!
I had ACLR October 2012, Scar tissue removal April 2013, and just had meniscus surgery this past Tuesday. I’ve had trouble with scar tissue the first two surgeries. I have been diagnosed with AF & was wondering are there any specialist near west palm beach, fl ?
Hi Jessica,
In terms of true patience (severely lacking in most so-called arthrofibrosis “experts”) , presence, expertise, research, rehab approach, there are two clinics in the world that are head and shoulders above the rest. There is one in the US (the other is in Norway). All of us arthrofibrosis-community folks have to ask the doctor question differently. The question to ask is, “Who is the best doctor to take my case?” rather than “Is there a specialist nearby?”
I’ve been a patient at The Steadman Clinic since October 2011, with my most recent surgery being 3 weeks ago. I’m light years better than I was, and so close to being normal. Over the course of surgery and several insfullations I got all my range of motion back-I was lacking a total of 22 total degrees of extension (compared to the other side) when I started seeing Dr. Steadman.
Dr. Steadman recently retired from his surgical practice. He has been working with his replacement, Dr. Steve Singleton, for quite some time. My case was transferred to him, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, kindness.
The level of competence and support at this clinic can’t be found anywhere else in the country. You will have a cohesive team to take care of you from the time you arrive until you leave.
Heidi
http://www.injuredathletestoolbox.com
I am 35 , five years ago I had Minor knee surgery. I have not been able to straighten my knee since. I have had numerous surgeries to remove scar tissue.. I even went to HSS where a doctor tried to straighten my leg using the Illizerov method. I developed a bone infection from one of the screws. To date I have not been able to work , I spend my days dealing with pain.
I am looking for a doctor who can treat Arthrofobrosis.. As you can see I have not been successful in treating the problem, I am in pain all the time . I have No life.
One doctor recommended amputation.. But another doctor recommended fusion. I just want to be able to walk or sit without pain.
Can anyone help me??
Allison
I heard good things about dr. millet and dr. laprade
I have had 4 surgeries on my right knee,just diagnosed with a.f.following tkr.I live in Chicago arfe there any doctors you can refer me to?
Sorry you are going through this Anne. We only know of 2 doctors with significant experience treating AF after TKR:
Dr Noyes
Cincinnati SportsMedicine and Orthopaedic Center
10663 Montgomery Rd
Cincinnati, OH
Tel: 347-9999
http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
John David Blaha
Taubman Center Floor 2 Reception B
1500 E Medical Center
Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
1-800-211-8181
http://www.uofmhealth.org/profile/745/john-david-blaha-md
Please whatever you do, do not see Dr. Blaha. He told me there was no such thing as arthrofibrosis. He was rude and very condescending. I would not send anyone I know to see him. He wasted tons of my insurance money and 3 months out of my life doing test after test and basically told me nothing. Just a rude and arrogant person. I still live with this nightmare and I do not trust a surgeon in this entire world. You should take this John David Blaha’s name of this referral sheet. You are sending someone who might have to pay for a worthless and degrading visit to a useless physician.
I have had knee replacement & since have developed a fibrosis knee. Dr has done manipulation, scope, & open surgery. Also, countless hours of therapy. Do I need a referral to see the dr in either Cincinnati or Ann Arbor? Or is there a dr in Missouri or Kansas that specializes with arthrofibrosis? Thank you, Leann polen
Sorry you developed AF Leann. We don’t know if you need a referral. It may depend on your insurance. We suggest you contact
Cincinnati SportsMedicine and Orthopaedic Center
10663 Montgomery Rd
Cincinnati, OH
Tel: 347-9999
http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
John David Blaha
Taubman Center Floor 2 Reception B
1500 E Medical Center
Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
1-800-211-8181
http://www.uofmhealth.org/profile/745/john-david-blaha-md
We don’t know of any specialists in Kansas or Missouri.
Im 24yrs old & in 2012 i developed an infection in my right knee. In result of the infection i had surgery in which the knee was washed out & cleaned to remove the infection. I then had PT which didnt help any. Eventually i developed a completely stiff knee, i cant bend it or straighten it at all. I cant walk at all and have been on crutches for a year. My knee is stuck at a bent position. I have visited numerous doctors & each one of them has told me that i have arthrofibrosis and its nothing that can be done for me to get the movement and flexibility back. If anyone can give me any advice i would greatly appreciate it also i would appreciate it if anyone knows of any doctors or surgeons who can assist me in my problem. I live in Maryland by the way. Thanks alot.
Hi J,
I’m just checking to make sure you saw my friend Victor’s post on the “Share Your Story” section of this site. He’s awesome! Give him a call.
All My Best,
Heidi Armstrong
http://www.injuredathletestoolbox.com
Have you tried hospital for special surgery in NYC? Dr Thomas Wickiweicz He couldn’t cure me but he did an arthroscopic release and I went from 88 ROM to 108 You are so young to have this condition. I think a phone call to Dr Wick is worth a try.
Best wishes
Laura
Dr. Wickiweicz of HSS did TKRs for two friends who both loved him. However, when I called for an appointment his office said he was no longer accepting any insurance, but would need $15,000 up front. So I used another HSS physician, who has left me after three procedures including a TKR with arthrofibrosis and in effect washed his hands of any further help.
There are indicators known or merely suspected for identifying a patient who will develop arthrofibrosis following a TKR, a manipulation, or a laparoscopic scar tissue removal procedure, all three of which I had during 2014. The apparent indicators are: a strong immune system and very good healing without infection. Another suspected indicator is that you tolerated the synvisc knee injections well, which I did for the year prior to my TKR.
I have the name of a surgeon in another city who uses an entirely different technique, and I am going to be flying out for an appointment soon. I am also going to check out two New England surgeons. In addition, there is a German surgeon who may be the answer for those of you with the money to travel that far. I will report back to this web site on my findings.
The orthopedic community has failed in its obligation to its patients to predict and treat arthrofibrosis, tending to shrug and make the patient feel guilty for not exercising enough, not taking enough P.T., etc. We who suffer from arthrofibrosis should speak up loud and clear. Mere physical removal of excess post-surgical or manipulation scar tissue is simply not enough.
So sorry you are going through this. You should contact
Dr Shelbourne
Shelbourne Knee Center
1815 N Capitol Ave, Ste 600
Indianapolis, IN 46202
Phone
1.888.349.5633 (toll-free)
317.924.8636
http://www.fixknee.com
Also please look for a rheumatologist that has an interest in or treats Inflammatory Arthritis. Here is one at Johns Hopkins http://www.hopkinsmedicine.org/allergy/faculty/bingham.html
Bingham, Clifton O. III, MD (Rheumatology)
Research Interests
Targeted Biological Therapeutics in the Treatment of Autoimmune and Inflammatory Diseases
Chronic Autoimmune Urticaria
Inflammatory Arthritis (Rheumatoid arthritis, psoriatic arthritis)
Appointment Phone
410-550-8089
I had a total knee replacement 9 years ago. and I dont know why but it never was right. Last year I went to an orthopedic doctor in kansas city, I live in Chanute Kansas and we have no one here. He said I had arthiobibrosis on my knee and I only have 40 percent motion. He had me go to physical therapy and said there was nothing he could do for me. The physical therapy lasted 5 weeks and they said since they could not do anything for me they would have to quit as medicare or my insurance would not pay. I am in so much pain 24/7 nothing helps. all kinds of pain meds have been tried but most make me sick. From morphine to percocet to arthritis meds, nothing helps. I can not live like this .. I wish and pray that someone out there could help me. I also have duprytrens contracture in both feet and in one hand and have severe degenerative bone disease all over my body.Who do I go to? What do I do.. I sure wish there was something for me! I am utterly sick of the pain and it is almost unbearable. 8 years of this.
So sorry you are in pain Deborah. You should look for a rheumatologist that has an interest in or treats Inflammatory Arthritis. Here is one in Kansas:
Dr. Aruna Baratham, M.D.
ARC-KC LLC
Allergy and Rheumatology Clinic of Kansas City
(913) 338-3222
Leawood Office
8401 West 125th Street.
Overland Park, Kansas 66213
(913) 338-3222
http://www.arc-kc.org/#!physicians/cipy
Dr. Baratham treats a variety of rheumatic conditions in adults and allergic/asthma/immunologic conditions in patients of all ages. Her key interests include treating inflammatory arthritis, rheumatoid arthritis, gout, asthma and allergic rhinitis. Dr. Baratham is active in medical research to help further the knowledge about and treatment of these conditions. She approaches patients with an understanding of the special issues facing patients with chronic diseases and with determination to help patients achieve health and wellbeing.
We only know of 2 doctors with significant experience treating AF after TKR:
Dr Noyes
Cincinnati SportsMedicine and Orthopaedic Center
10663 Montgomery Rd
Cincinnati, OH
Tel: 347-9999
http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
John David Blaha
Taubman Center Floor 2 Reception B
1500 E Medical Center
Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
1-800-211-8181
http://www.uofmhealth.org/profile/745/john-david-blaha-md
Hi, I was amazed at finding this website. I’ve searched for a long time for sites related to Arthrofibrosis For years I’ve struggled with weight issues, and in turn have had a lot of problems with my knees. I’m told I have arthritis in both knees and am told that I’m now bone on bone. About 3 years ago, I woke up and I could not move my left knee without extreme pain. I was unable to walk or put any weight on it. It was stuck in a bent position. I called my knee doc and went for an appt. He did xrays and couldn’t see anything…we discussed knee replacements and I was told that he really did not like doing replacements on someone my age…I was 50 at the time. So we decided on Arthroscopic surgery so he could see exactly what he was dealing with. Unfortunately the day before my surgery I ended up in the hospital with blood clots in both lungs. Therefore my surgery was postponed. I had to wait 6 months because of the meds I was on. So during this 6 month period, my knee stayed bent, but some of the pain did go away. I wasn’t able to put much weight on it still without pain. When I finally went in for the surgery, afterward my Doc told me that it was the worst looking knee he had ever seen.(and he’s done thousands of surgeries) He told me that he repaired some tears and removed as much of the scar tissue as he could. And I was diagnosed with Arthrofibrosis. He said he was able to straighten my knee on the table but there was no guarantee that I would be able to straighten it again. I was sent home, and had some in home therapy. And eventually was able to go to rehab. I regained some of the motion. I’m now able to walk a bit with a walker but for anything long distance I need a wheel chair. It is difficult for me to find anyone to travel with me if I can find a specialist. My problem is, even though I have one of the best Orthopedic surgeons around, i’m in a small area, and I’m the first case he’s seen, and I was the first case that my physical therapists had seen. They were really at a loss as to what to do for me. I’m wondering if there are any specialists with in an hour or 2 of where I live? I’m in Coudersport, Pa. Or what your thoughts are on having a knee replacement with this disease? Or will it just make matters worse. I really need help…I’m too young to be in this shape…:(. I need some place that is not too far away as it is hard for me to get anyone to travel with me too far way, and I’m not able to afford the trips or to stay away from home….Any suggestions are greatly appreciated. I want my life back.
Thank You
Tina Daughenbaugh
70 Bryant Hollow Rd
Coudersport, Pa
16915
814-274-7080
Im 24yrs old & in 2012 i developed an infection in my right knee. In result of the infection i had surgery in which the knee was washed out & cleaned to remove the infection. I then had PT which didnt help any. Eventually i developed a completely stiff knee, i cant bend it or straighten it at all. I cant walk at all and have been on crutches for a year. My knee is stuck at a bent position. I have visited numerous doctors & each one of them has told me that i have arthrofibrosis and its nothing that can be done for me to get the movement and flexibility back. If anyone can give me any advice i would greatly appreciate it also i would appreciate it if anyone knows of any doctors or surgeons who can assist me in my problem. I live in Maryland by the way. Thanks alot.
Hey,
I had ACL surgery October 2015, and had 2 surgeries for arthrofibrosis after that. I just had my 3rd surgery a week a ago, and i’m already looking for a different surgeon. Unfortunately my leg still looks and feels the same as before. I heard doctor Millet is great. Some say doctor LaPrade is good too. Hope you’re doing well by now
Hey,
I had ACL surgery October 2015, and had 2 surgeries for arthrofibrosis after that. I just had my 3rd surgery a week a ago, and i’m already looking for a different surgeon. Unfortunately my leg still looks and feels the same as before. I heard doctor Millet is great. Some say doctor LaPrade is good too. Hope you’re doing well by now
Im 24yrs old & in 2012 i developed an infection in my right knee. In result of the infection i had surgery in which the knee was washed out & cleaned to remove the infection. I then had PT which didnt help any. Eventually i developed a completely stiff knee, i cant bend it or straighten it at all. I cant walk at all and have been on crutches for a year. My knee is stuck at a bent position. I have visited numerous doctors & each one of them has told me that i have arthrofibrosis and its nothing that can be done for me to get the movement and flexibility back. If anyone can give me any advice i would greatly appreciate it also i would appreciate it if anyone knows of any doctors or surgeons who can assist me in my problem. I live in Maryland by the way. Thanks alot.
Hi, check under the practitioners tab on this site. Also, you will find a lot of information on arthrofibrosis at http://www.kneeguru.co.uk
Hey J,
Your story resonates with me as it is EXACTLY what happened to me. I had a ‘trivial’ scope on my left knee. 4 days later…massive Staph infection, emergency lavage…aaaaanndd…..stuck in bed on IV drip and a permanently frozen knee. Long story short I am 25 months out and a total of 6 surgeries and finally I think I may have turned a corner.
Here’s my advice: find the money, fly to The Steadman Clinic in CO and see Dr. Steadman. He is the world expert on this condition (which is very serious and hard to resolve).
I’m open to talk if you have questions. I’ve been through it. I get it.
512-653-8318 cell
This is SO CRAZY! Victor, I was about to reply to him, then call you to see if I could connect y’all!
Heidi
http://www.injuredathletestoolbox.com
I fell and broke my right knee in September 2012.
This knee already had an arthroscopic surgery in 1989 due to breaking the dashboard of the car in an automobile accident. That arthroscopic surgery was needed to remove a plica which continued to be inflamed after months of PT. I developed significant scar tissue and required a manipulation. I have known that I have osteoarthritis for years, but live a healthy lifestyle and was doing fine until the accident in Sept. 2012.
At the time of the accident my xrays did not show a break, but by January 2013, I was having constant problems with my knee giving way, and essentially being lame in my right leg. At that juncture I chose to visit Sports Medicine at University of Iowa in Iowa City, IA. I was told that my knee cap was broken in two and due to the condition of my knee my only recourse was a TKR. I did not want to have the TKR, because I am only 62, and had hoped to stave off the possibility until I was older. Prior to accident I was walking 5 miles a day and swimming.
I finally agreed to do the TKR; it was done July 23rd, 2013, and of course, I made scar tissue. The manipulation was Sept. 3rd and I am still in PT. The surgeon was aggressive with CPM, etc. due to my previous history. But nonetheless here it is mid October, and I am only bending on my own at 90 degrees after working out.
When I asked about ArthroFibrosis, my surgeon said “yes, you make too much scar tissue.”
I live in Southeast Iowa. Are there any doctors specializing in AF in Iowa or nearby states? Thanks so much. Want to do everything I can to be as active as possible. I am into eating an organic diet, no processed foods, etc. Appreciate your assisitance.
Nancy, my TKR was done Jan. 2013, had a manipulation in March. Constant PT, it is now Oct. and still only at 83 rom, there were gaps in between at PT cause worker’s comp denied them did PT on my own still cannot peddle all the way around on bike, but bend is gradually getting better. Try pool therapy, it might help. I am 63
Rick, Thanks so much. I love swimming. Grew up in CA, so I will definitely try pool therapy.
In March 2005 I had partial knee replacement surgery. Because of complications with the cement used in the partial replacement, in January 2006 the partial was removed and a total knee put in. This time with screws. My doctor said because of all the prior surgeries I had over a period of 15 years on this knee, and then having these back to back replacements this is one factor that contributed to me developing arthrofibrosis. He tried removing the scar tissue, manipulating the knee, and extensive therapy but no go. Scar tissue grew back. Also in my situation I have not regained any feeling on the right side of my knee. It was my right knee that was replaced. My pain level that I have day to day depends on my activity. I have noticed since moving back to cold weather that the knee aches a lot more. Doctor says in my case that there is nothing that can be done but to deal with it. I’d like to hear if anyone may have similar problems.
See my comments further up and wait for my report back. There probably IS something that will resolve the problem, and I am actively looking into it.
An athlete my whole life, maintained high level of fitness and health. Knee pain so had bilateral TKR and instead of being better, am now a cripple. Excessive scarring was immediate causing much pain and limited flex. Next had manipulation under anesthesia. Scarring, swelling, pain even worse and still limited flex and pain relief. Next had arthroscopic lysis of adhesions with epidural for pain management. Side effects of the drugs were horrible altho pain was managed. However, flex still not there. Epidural removed and dealt with withdrawal from fentynol plus significant pain and swelling got worse. Doctors have no solution and my life is ruined. Willing to travel anywhere to help, just want to walk again without pain. One doctor recommended another TKR with radiation to address arthrofibrosis at the cellular level. Surgery still experimental and high risk surgery with 50/50 chance of improvement. Looking for a doctor that can help.
Stephan, curious as to what did you do for rehab after these interventions. My ROM decreased once I started PT after TKR. After MUA I worked hard with PT to get the leg bending and rather than improving, it got worse week by week. When I had arthroscopic lysis, I’d lost trust in PT and followed the recommendations outlined by Kirk Kokomyer on the kneeguru website. Aggressive PT actually encourages proliferation of arthrofibrosis. Anyhow I ended up victorious though have the aftermath of recurrent synovitis which I can live with.
Stefan,
I have been a patient of Dr. Steadman’s since October 2011. I cannot recommend him more highly Dr. Steadman will also treat arthrofibrosis after a TKR, however he is particular about taking cases of this nature. I’d suggest calling The Steadman Clinic and see what they say.
All My Best,
Heidi Armstrong
http://www.injuredathletestoolbox.com
Heidi,
What was your circumstance and what are your results from Dr. Steadman? Can you please share some details?
Thank you!
Hi Laura,
My full story is at http://injuredathletestoolbox.com/why-i-understand/. I can walk now (or before my most recent surgery!); I got all my range of motion back-I was lacking a total of 22 total degrees of extension (compared to the other side) when I started seeing Dr. Steadman.
Dr. Stadman recently retired from his surgical practice. He has been working with his replacement, Dr. Steve Singleton, for quite some time. My case was transferred to him, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, kindness.
Heidi
http://www.injuredathletestoolbox.com
Heidi,
I live in Evergreen Co. which is in between Vail and Denver. I was a patient at the Steadman Clinic in Denver for 13 years. I agree that Dr. Steadman is great BUT he does NOT take any patients with AF after a TKR, he will take patients with AF though. I know this because I called him and if they would help anyone you would think it would be a previous patient.
Lori,
You’re right. He was very particular about taking TKR cases. That said, in my time there, I met two cases he took on. Also, he recently retired from his surgical practice. He has been working with his replacement, Dr. Steve Singleton, for quite some time. My case was transferred to him, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, kindness. **However,** he may take on cases Dr. Steadman wouldn’t, including arthrofibrosis post-TKR.
Heidi
http://www.injuredathletestoolbox.com
I had an ACL reconstruction, micro fracture surgery, exterior+interior meniscectomy on 1/3/2011. Ever since the surgery I have been unable to extend my leg even though I completed the 4 months of PT. Up until today I always assumed that because a resident Doctor performed my surgery(at the time I had no health insurance therefore Medical only uses certain Doctors) and that he may of “messed up” somehow and I would just have to deal with it but after reading up on my situation I believe that Arthrofibrosis is the cause. I now have a pretty decent insurance plan and was wondering how do I go about “fixing” my knee? Is this considered a pre-existing injury that will not be covered my insurance? Any advice would be greatly appreciated! THanks in advance
Jeff, check your policy. When I had a prior illness then changed insurances, I had to wait 6 months before claiming a prior illness, however injuries maybe different.
Hi Jeff,
There are very few doctors in the country who treat arthrofibrosis. If I could start over again on my journey, I would have left Austin and gone straight to Vail to see Dr. Steadman. I got there eventually, but it took a year. I cannot recommend Dr. Steadman more highly; I’ve been a patient of his since October 2011.
Heidi Armstrong
http://www.injuredathletestoolbox.com
Heidi, I had TKR April 2012 and now have a serious case of arthofibrosis, 95 degree max flex and daily aches and pain. I spend about six months of the year in Breckenridge and have been to the Steadman clinic (other doctors) for elbow and shoulder issues but not the knee. Can you be more specific what Dr. Steadman did for you? I have been told that nothing really works making a knee right again oncne scar tissue has developed. Also, would you be willing to share where in Austin you had surgery? Mine was with Austin Bone and Joint Clinic.
Richard,
I haven’t been on this forum in a while, so I’m sorry for the delay in responding. Dr. Steadman disrupts the joint as little as possible. I had two failed surgeries in Austin, TX, in December of 2010 and March of 2011 with Earl Kilbride. Though I had a raging case of arthrofibrosis, he didn’t diagnose it and used a debrider to break up and remove the scar tissue (the worst thing he could have done).
I’ve learned that almost all surgeons use a debridement tool to remove scar tissue. This tool cuts up and disrupts the extensive vasculature of the scar. In my case, I had two surgeries with Dr. Kilbride who used this device. It dug me a deep, deep hole in December 2010. When I woke up from my surgeries and the surgeon said he had to tourniquet my leg I knew I was in trouble. The debrider is responsible for the proliferation of my scar beyond what it originally was. The bleeding creates an environment for the scar to grow right back–with a vengeance. Dr. Steadman doesn’t remove the scar; he releases it using a teeny tiny heat probe that cauterizes the scar as he releases it. His goal is zero bleeding during surgery.
All that said, Dr. Steadman retired from his surgical practice recently. My case was transferred (through a meeting with Dr. Steadman) to Dr. Steve Singleton who did my surgery 3 weeks ago. He is every bit as competent (same surgical philosophy) and present as Dr. Steadman. I recommend him highly.
You can reach me through my website.
Heidi
http://www.injuredathletestoolbox.com
Hi Heidi,
I am british living the UK. 20 months ago I had TKR of left knee followed by 48 hours on a CPM machine in bed (constant passive motion) to prevent Arthrofibrosis, then 6 weeks physio. Unfortunately, I have got it and after 3 procedures of MUA ( Manipulation under anaesthetic) and 6 weeks physio + the CPM each time, all to no avail. I am stuck on 10/90 flexion and extension as was after the TKR.
My surgeon and the physio guys say nothing further can be done for me. I am a 65 year old, retired from the Royal Air Force having served 25 years, and injured my knee during military service.
I am afraid that I am not in a financial position to hope for treatment at the Steadman clinic, but maybe the clinic you mention in Norway could be a possibility, so please can you let me have the details of it and address etc?
Best Regards
Michael
Hi Michael,
Try Marc Strauss or Lars Engebretsen at Ulleval Hospital.
Heidi
http://injuredathletestoolbox.com/optimal-recovery-from-chronic-injury-in-three-steps/
Hurt on the job in 2001, finally had to have a TKR in Jan. 2013, then manipulation in March. Still only got to 70 rom. Aug.2013 my surgeon says I’m at MMI with severe arthofibrosis , and my temp total compensation stopped. I did qualify for social security disability, but how long can arthofibrosis last.
Four months ago I had TKR and have had little success in gaining more than 98 degrees of flexion in the treated knee, despite diligent attention to doing the recommended PT. I would like to understand more about the treatment that the doctors recommended on your website are doing. I do understand that they perform an arthroscopic surgery on the arthrofibrosis, do they cut the adhesions or is there another way of freeing the knee from the stiffness caused by them? Your answer would help me to make decisions about a course of treatment. I find that the pain, inflammation and lack of flexion are seriously affecting my life. Your help would be most welcome
I need to find a AF specialist and i live in Reno , nevada ?
Eric,
You are really, *really* close to the best AF specialist in the world. Dr. Steadman saved me from an uncertain future of disability. I cannot recommend him more highly.
All My Best,
Heidi Armstrong
http://www.injuredathletestoolbox.com
I see most stories here are about knees, my problem is my ankle, so I thought I’d share my story for any other ankle arthrofibrosis sufferers. For more on my story, castinblue.blogspot.com.
Almost a year and a half ago I broke my ankle in a stupid fall down my stairs. Unfortunately for me, I had some complications leading me back for revision surgery 5 months later (my third surgery). During that surgery my orthopedic surgeon also found dense adhesions throughout my ankle, which he cleaned up. Due to my other issues I was in a cast for a 6 weeks, so naturally my scar tissue came back. In February this year I had some hardware removed as well as arthrolysis to deal with the scar tissue again, and I felt great for about a month. It then became obvious to me that the scar tissue had returned.
A month ago, anxious to try anything, I had a cortisone injection, which was great – for three days. My surgeon said that very brief improvement suggested it would be worth trying the arthrolysis again, this time doing both the back and front of ankle. I was a bit skeptical about the chances of keeping the scarring at bay, but agreed to try it. My surgeon told me that he thought the scarring wasn’t that bad, that it had just built up in a few key places.
WRONG! He got into the front of my ankle and found what he later told me was the worst scar tissue he’d ever seen! He couldn’t proceed with the arthrolysis because he couldn’t get the arthroscope in, and instead did an open medial arthrotomy to clean it all out. He did not do anything at the back of my ankle because he did not want to risk nerve damage by doing open surgery there.
I felt vindicated that I was right. But my big problem is that I find it hard to believe that the scar tissue isn’t just going to come back, given that it’s come back before. I am working really hard on my ROM, as much as I can whilst still having stitches that are quite restrictive, but I feel like it just might be doomed. I am told that my ROM will never be great (narrowing of the joint space is also restricting me) but the current feeling that my ankle is not “gunked up” is great and I would love to keep it.
Melanie,
I recommend calling the Steadman Clinic and talking with Dr. Clanton, a renowned foot and ankle surgeon. Dr. Steadman treats arthrofibrosis of the knee, and perhaps the two of them could team up on your case.
All My Best,
Heidi Armstrong
http://www.injuredathletestoolbox.com
April, thank you for sharing. May I ask how old you are? I am 32, and it turns out 32 might not be young enough to recover from the sever ankle sprain I suffered almost a year ago. My ankle is now very stiff with limited range of motion, and the lack of range of motion is giving me problems in my knee and hip. I am trying to gather information about arthoscopy to see if it would improve my range of motion. Prior to the injury, for my whole life I have been extremely active, playing soccer and basketball and hiking. The injury has been devastating to me and my psychological well-being. Thanks for anyone who can reply to this with any testimonial that might help me learn more about arthroscopy.
I meant my previous for Melanie, with the ankle injury. Melanie: thank you for sharing. May I ask how old you are? I am 32, and it turns out 32 might not be young enough to recover from the sever ankle sprain I suffered almost a year ago. My ankle is now very stiff with limited range of motion, and the lack of range of motion is giving me problems in my knee and hip. I am trying to gather information about arthoscopy to see if it would improve my range of motion. Prior to the injury, for my whole life I have been extremely active, playing soccer and basketball and hiking. The injury has been devastating to me and my psychological well-being. Thanks for anyone who can reply to this with any testimonial that might help me learn more about arthroscopy.
I had a total knee replacement in 2006 with almost immediate scar tissue problems. 2 months post-op had MUA which did not help. In 2007, I had a partial revision with removal of large amount of scar tissue completely surrounding the knee. Again, despite all my efforts and MUCH physical therapy, the scar tissue became worse than ever. Now, 7 years later, I am still unable to bend the knee enough to sit comfortably, cannot walk down stairs but one step at a time, the knee is basically”frozen”…….both surgeons who operated on me have not responded to any of my emails; one surgeon who agreed to see me told me point blank “scar tissue is like cement. Once it’s there, it’s there for good!” (not what I wanted to hear). I have tried everything in an attempt to give me some relief from the agonizing stiffness I have suffered all these years and nothing has worked. I have been told “no forced bending” and that any therapy I receive should be “gentle in nature” by a surgeon who was good enough to answer my email. I am really at the end of my rope trying to get some relief. I am sure my family is tired of hearing me complain but the knee replacement has truly ruined my life as I am unable to do much of anything I did prior to the surgery.
Is there any help for patients like me?
I have just had TKR july. and aug 29 a scope to clean out arthrofibrosis. as soon as i got of the the steriod dose pac the fibrosis came back in 4 days and locked my knee down to about 90 degree flexion and -5 degree extenson. Im an athletic trainer amd this is causing me to not ne able to work on my feet doing a game.
my address is 8301 nw 37 Bethany. Ok
please send me any info on this problem.
Thank You.
Sharie.
Hi there,
I had an acl reconstruction done in jan 2012. After a very traumatic situation with the physiotherapist over flexing my knee 5 days after the surgery I have developed arthrofibrosis inside the joint. I had a scan done last year which showed the AF, and another last week that has shown it had spread. I have tried many different medications, a pain patch, manipulation under GA and used a CPM machine. None of which have worked and as I said has worsened. I am now at the point with the consultant that they do not know what to do. I am 23 years old with two young children and really hope their is something that I can do to improve my situation presently. My knee is 15deg off straight and can be bent to 70deg with pain. I really would like to hear what other people have tried? How bad it could affect the knee? And is there a specific consultant in England that may be able to help me as I know the consultant I have does not specialise in AF and wondered if you could tell me whether there is anyone that could help me. Thanks in advance
Hi Shontel,
I’m always amazed at the dearth of knowledge in the physio community about arthrofibrosis. I’m sorry you had such a bad experience with physiotherapy. To answer your question: I had two failed surgeries in Austin, TX, in December of 2010 and March of 2011. Though I had a raging case of arthrofibrosis, my surgeon didn’t diagnose it and used a debrider to break up and remove the scar tissue (the worst thing he could have done). Scroll down a bit and see what I wrote to Rd3 about debridement. If you choose to stay in the UK for surgery, chances are your knee will be debrided/you’ll have a lysis of adhesions using the debridement tool. In that case, there’s a good chance your knee will get worse. As crazy as it sounds, I cannot urge you enough to save money and go see Dr. Steadman in Vail, Colorado. He’s the best in the world, and were it not for his skill I’d have no chance of living a normal life. My full story is here: http://injuredathletestoolbox.com/why-i-understand/
All My Best,
Heidi Armstrong
http://www.injuredathletestoolbox.com
I tore ACL, MCL, and PCL from a skiing accident on Feb 2012. I waited three months for MCL to heal. Then, had a ACL reconstruction surgery. I developed major scar tissues after the surgery and ROM was 20 degree on extension and 80 degree on flexion after three months of the surgery. I tried jazz brace, biking, rowing machine including three times a week Physical therapy. No additional ROM after three months of the surgery but a lot of pain during exercises. Based on my doctor recommendation, I had arthroscopic surgery to remove scar tissues on October 2012. I faced the same battle with scar tissues. I only gained 10 degree on both flexion and extension. No more progress after three months or so again. Now, I’m stuck with stiff knee at 90 degree on flexion and 10 degree on extension. I visited two different doctors within last 5 months and they both told me to have 2nd arthroscopic clean up. However, their recovery plan is no different than what I’ve done for two previous surgeries. They told me I have arthrofibrosis and I’m only 29.
I noticed your recommendation on Practitioners but Dr. Shelbourne is in Indiana and Dr. Steadman is in CO. I live in Seattle so wondering if there are any other doctors closer to Seattle that I could see? Many thanks!
Hi Jenny,
There are very few doctors in the country who treat arthrofibrosis. If I could start over again on my journey, I would have left Austin and gone straight to Vail to see Dr. Steadman. I got there eventually, but it took a year. I cannot recommend Dr. Steadman more highly; I’ve been a patient of his since October 2011.
Heidi
http://www.injuredathletestoolbox.com
Hi Shontel,
I’m always amazed at the dearth of knowledge in the physio community about arthrofibrosis. I’m sorry you had such a bad experience with physiotherapy. To answer your question: I had two failed surgeries in Austin, TX, in December of 2010 and March of 2011. Though I had a raging case of arthrofibrosis, my surgeon didn’t diagnose it and used a debrider to break up and remove the scar tissue (the worst thing he could have done). Scroll down a bit and see what I wrote to Rd3 about debridement. If you choose to stay in the UK for surgery, chances are your knee will be debrided/you’ll have a lysis of adhesions using the debridement tool. In that case, there’s a good chance your knee will get worse. As crazy as it sounds, I cannot urge you enough to save money and go see Dr. Steadman in Vail, Colorado. He’s the best in the world, and were it not for his skill I’d have no chance of living a normal life. My full story is here: http://injuredathletestoolbox.com/why-i-understand/
All My Best,
Heidi Armstrong
http://www.injuredathletestoolbox.com
I tore my ACL and had surgery in May 2012. I never gained back my ROM so after months of PT and using a CPM my surgeon did a manipulation in Sept 2012. The week after surgery I was doing good. My ROM was improving but after two weeks of going to PT 5 days of week my ROM did not improve. I was diagonised with Arthofibrosis. I continured to do PT with limited results and my surgeon had me go see a sports Chiropractor who worked on my ROM. I had little improvement and found out that I had hip and back problems as well. After months of PT my surgeon decided to go in and do a scope and clean everything out. I had a significant amount of scar tissue in my knee. I started PT again and made progress with my ROM but now 5 months later PT is not helping me anymore and my main problem is I can only get my extension to 7 degrees after 30 minutes of PT. On a normal basis I walk around with a bent knee probably close to minus 14 degrees and I favor my knee. I limp constantly and need to get up every couple of minutes otherwise my knee tightens up. I know I can’t live like this the rest of my life as I am a active 35 year old woman. Any suggestions on next steps?
Hi April,
Our stories sound similar. My full story is here: http://injuredathletestoolbox.com/why-i-understand/
In total, I had a 22 degree flexion contracture (my knee was 12 degrees short of 0 and 10 degrees from the same hyperextension as my non-affected side).
If you choose surgery, be aware all arthroscopy is not equal, so I’d say beware, and only do it with the right surgeon (read: Dr. Steadman). I have had arthrofibrosis since a comminuted lateral and medial tibial eminence fracture that extended to my medial tibial plateau. I’ve learned that almost all surgeons use a debridement tool to remove scar tissue. This tool cuts up and disrupts the extensive vasculature of the scar. In my case, I had two surgeries in my hometown from a surgeon who used this device. It dug me a deep, deep hole in December 2010. When I woke up from my surgeries and the surgeon said he had to tourniquet my leg I knew I was in trouble. The debrider is responsible for the proliferation of my scar beyond what it originally was. The bleeding creates an environment for the scar to grow right back–with a vengeance. Dr. Steadman doesn’t remove the scar; he releases it using a teeny tiny heat probe that cauterizes the scar as he releases it. His goal is zero bleeding during surgery.
I highly, highly recommend seeing Dr. Steadman for treatment.
All My Best,
Heidi Armstrong
http://www.injuredathletestoolbox.com
I developed arthrofibrosis after total knee replacement 11/15/2010. I had a lot of pain and swelling. I was bending at only 85 degrees. A sure way to make it worse was having a physical therapist push knee painfully. Nothing made it bend better.
My surgeon did a manipulation at 8 weeks. I felt so much better after. My knee felt untethered. But soon the bend started to decline. Four weeks later I underwent arthroscopic lysis.
This is a practically a miraculous intervention but it still took weeks to start bending beyond 90 degrees. My bend is fine today.
What’s so so important is to not be aggressive in PT after any intervention. I only used the CPM, I iced and elevated much of the day, and twice a day I did long slow stretches which I held. I kept this up for two months, at which point I was bending about 110. After that I put no effort into bending and have about 130 degrees now. Extension lag of 10 degrees also slowly disappeared as the flexion improved. SLOW and GENTLE is my mantra for arthrofibrosis.
My doctor in Maine had done an internship at the Steadman clinic and knew what to do.
Yes, the key I see here is that your doc had trained with Richard Steadman. your surgeon knew about the gentle approach and I want to tell you very few know this. They lay on the PT heavily and then it is over for the patient. I was not as lucky, butI am truly happy for your success. The right doctor without a huge ego is everything.
Could you please share the information on the Dr. in Maine that helped you?
Thanks
We have had three surgeries for Arthrofibrosis. Our first at the Steadman Hawkins Clinic in Vail with Dr. Millett. So far so good. We are so appreciative of the help that we have received from the Arthrofibrosis Foundation. There are so few doctors out there that have accurate knowledge in the field of AF. The Foundation has provided us with education, funding, support and doctor referrals. We are finally receiving the correct treatment.
Hello. I have NOT had knee surgery, but have arthofibrosis on the left knee. I did have a bad fall on left side ankle in a soft cast 12 years ago. Why would a fall from 12 years ago cause this? Can it be caused by a general over reaction I have had physical therapy twice, once six years ago and it really helped. And just now, for 20 visits. I’d lose my flexion over night it seemed! How do I get this overnight again? It’s so much better after the PT mobilizes and I can get from70 degrees flexion to 90 in one session…but then seem to lose it overnight!
I did work at a library for YEARS and constantly did knee bends to get books, etc. in order to save my back. Bend at the knees, saves your back! Could that have contributed? Only minor arthritis.
I’m a teacher, and need to be on my feet all day. This is SO depressing! Painful constantly and limiting.
Anyone know of doctors who know this condition in the Chicago area? I’d like to avoid surgery if possible. physical therapy really was starting to help, but now back in school and cannot get there in time.
I am terrified of surgery, terrified of the stories I’ve heard. Won’t the problem be exacerbated by surgery–more scar tissue??
Thanks!
PS My fall in2001 was down marble stairs, landing on left knee and twisting left ankle badly. I was lucky nothing was broken. NO treatment then for the knee, only Pt for ankle after a soft cast for six weeks. The knee was never right after that, but could manage with exercise, biking in particular. Around 2006 I could no longer bike since I fell off bike due to loss of strength, not knowing I had undiagnosed hyperthyroidism. I am not a doctor, but I believe my knee got very bad after hyperthyroidism. Once diagnosed and treated, it seemed to settle down a lot from 2008-2012, but has been very painful even with lots of PT and exercise since then. I can no longer bike, since I cannot turn the bike pedal around even after 20 PT sessions. Very hard to teach on a second floor like this and be on feet all day. Can thyroid issues affect a joint like this? Could be a coincidence, but when the thyroid was hyperthyroid, every movement to the knee resulted in pain.
I am so sorry to be so wordy. Thyroid treated successfully with medication, and I’ve had normal blood tests ever since the first month of medication for hyperthyroidism. I am just baffled as to the cause of my condition since I’ve not had knee surgery,but a fall for which knee was NOt treated, and a “bad knee” when thyroid was untreated–and years of library work with many, many knee bends to try to save my back. Thank you for your patience.
had double tkr 2 years ago and have full rom in both knees.however stiffness and pain in both knees.7 ortho docs say it is arthrofibrosis.but every site on the net deifines it as causing severe restriction of knee movement.can this be a correct diagnosis.
Owen: I also had full ROM after knee surgery to repair a torn lateral meniscus and quadriceps tendon. However, I was experiencing intense stiffness and pain directly under the lower medial and lateral incisions. With these complications I was unable to progress with PT to build my quadriceps size and strength up again. 8 months after the surgery, the surgeon performed a 2nd surgery on my knee. He said that I had considerable arthrofibrosis in my knee and then cleaned out all the excessive scar bands. So yes in my case I did have full ROM but despite that the knee joint was extremely stiff and painful. Now two months after the 2nd surgery I am feeling a little better but the knee joint is still very stiff and painful. I feel like the arthrofibrosis is coming back again??? Does anyone have any suggestions I how I can proceed from hear? Finally, I should mention that I am only 30 yrs of age…and am a competitive xc ski racer and mountain bike racer. I am not ready to give up on my life yet because of arthrofibrosis.
I had a TKR in 2008,was doing well till 2012,when my knee began to stiffen. Xrays showed bony growths behind the new knee–what my orthopod called ” a doorstop AF? I can’t flex past 80 degrees, can no longer ride a bike. Now he says I need double hip replacements, as the cartilage is gone on the same leg as the TKR and 90% gone on the other. I’m very afraid of developing more AF around the proposed THR. Is this common? I am in a lot of pain in the hip,but am petrified of becoming more immobile after this proposed surgery. Help!!!
I had a TKR on my right knee on 1/4/13 and my recovery was very slow and after much physical therapy because my ROM stopped at 95 degrees. My surgery performed a MUA on 4/10/13 which did help and I had 10 days of intense PT. After that my surgeon had me continue with more PT to gain the strength required in my muscles to gain the required ROM. I am able to walk down stairs, but find that I am now still in pain 6 months after my surgery. I think I have Arthrofibrosis as my knee has a constant “tight band” feeling that does not go away and gets worse after a busy day or with activities like cleaning the house. I have not called my surgeon to ask if they think I have this condition, but do not live too far from one of the doctors who specialize in this condition. Would it be in my best interest to contact Dr. John Blaha who is in Ann Arbor, MI for a consult or do I have to have a referral from my surgeon ? I keep being told by my doctors office that “I will eventually get better”, but my quality of life now after my TKR ( still have to have a left knee replacement done) has been horrible and depressing for me as I keep feeling like I am never going to get better. Looking forward to some positive answers to my concerns. Thank you.
Had acl surgery 6 months ago in Toronto. Passively can get to 150 and 5 degree extension. Actively around 130 ish. Any advice on if I should do arthroscopic surgery?
Hi There,
All arthroscopy is not equal, so I’d say beware, and only do it with the right surgeon (read: Dr. Steadman). I have had arthrofibrosis since a comminuted lateral and medial tibial eminence fracture that extended to my medial tibial plateau. I’ve learned that almost all surgeons use a debridement tool to remove scar tissue. This tool cuts up and disrupts the extensive vasculature of the scar. In my case, I had two surgeries in my hometown from a surgeon who used this device. It dug me a deep, deep hole in December 2010. When I woke up from my surgeries and the surgeon said he had to tourniquet my leg I knew I was in trouble. The debrider is responsible for the proliferation of my scar beyond what it originally was. The bleeding creates an environment for the scar to grow right back–with a vengeance. Dr. Steadman doesn’t remove the scar; he releases it using a teeny tiny heat probe that cauterizes the scar as he releases it. His goal is zero bleeding during surgery.
So, to answer your question, if you are going to see Dr. Steadman, an arthroscopy may be helpful, but if you’re going to see just about anyone else, it’s likely they will dig you a deeper hole. Good luck!
All My Best
Heidi Armstrong
http://www.injuredathletestoolbox.com
Following my ongoing, painful experience with arthrofibrosis of the right knee I wanted to post a few things that have helped me with the pain and seem to be contributing to slow progress in flexion and maintaining extension of around 5º. I bought a floor pedal machine (looks like bike pedals on a small frame that sits on the floor) for $30.00 on amazon.com. I try to use it every time I’m sitting down. It would easily fit under a desk for people at work. The floor pedals can be used by people with less flexion than a standard, stationary bike requires.
I go to the pool twice a day, hang onto the edge and sort of just kick my leg around, or alternate between bending my knee up in front of me as hard as I can, then kicking it out, straight behind me. After 20 minutes in the pool, a HUGE amount of stiffness is relieved. Even moving this little bit has been tremendous is relieving pain and helps clear the fogginess of a terribly sedentary life. I also purchased a used CPM machine on ebay.com and am excited for it to arrive tomorrow. I don’t know about everyone else, but I loose a lot of flexion/extension overnight while I sleep. I’m hoping to alleviate this problem with the CPM machine.
I’ve been dealing with arthrofibrosis since a 01/2013 following a ski injury and two related surgeries. It is a terribly painful, constant and depressing state! I’m currently not working, I’m a nurse and unable to care for patients. Since I’m unemployed I’ve got all day, every day to work on my knee. I understand different people have different amounts of time to put into therapy, but the bike/pool combo has given me the most hope of any treatment I’ve tried. I hope it helps!
I am going to take some of your advice. I had a total knee replacement in 2010. The surgeon repaired some ligaments at the same so they immobilized my leg for the first to weeks instead of putting me directly on a cpm machine. I was on Medicaid so my physical therapy was limited. I had one manipulation and they told me I would have to just live with the stiffness and the pain. I’m only 56 and am on disability and receive Medicare. I am too young to live like this. Since you are a nurse you can understand how frustrating it is when you reach out to doctors for help and they show no compassion and they just tell you to live with it and there is nothing more they can do.
Hi Jessica,
Those are some really good tips. I’ve had arthrofibrosis since November of 2010. Dr. Steadman in Vail saved me from being disabled for the rest of my life, though I still have a way to go and one more surgery in January. I can’t recommend him more highly. He is an incredible surgeon and an even more incredible human being. He’s one of a kind.
All My Best,
Heidi Armstrong
http://www.injuredathletestoolbox.com
I had surgery for a tibia plateau fracture on Dec 1, 2012. Things seems to be going well until the orthopedist increased my brace to from 30 to 90. I accidentally jam my leg against the side of the desk as I was swinging my leg out from under the desk chair which pushed the knee joint way up and I heard a crunching sound. I immediately felt pain in my knee and called the orthopedist. I got an appt the next week and they took xrays and said everything was in place and not to worry about the pain, that it would subside. It is now 7 months after my surgery, my knee looks like a melon and I cannot walk on my own as my leg will not straighten and when I try to walk with the walker the pain in my knee gets so bad the knee just buckles. I have been through PT with no improvement and I am currently doing aqua-therapy but it doesn’t seem to be helping. I did research on arthrofibrosis it sounds just like what I have. Please let me know if there are any orthopedic surgeons on the main island of Oahu in Hawaii who can help me. Thank you.
So sorry you are going through this Rose and that you have so much pain. Sorry we don’t know an AF specialist in Hawaii. We suggest that you read as much as you can about arthrofibrosis so you understand what to do and what not to do. how to treat it. There are many articles listed on this cite. There is also a lot of information on the Knee Geek website http://www.kneeguru.co.uk/KNEEtalk/index.php?board=9.0.There is a tutorial by Dr Noyes. In general, you want to do everything you can to reduce swelling and inflammation. Staying off the knee, ice, anti-inflammatory diet etc. You can ice 6 or more times a day. 10-20 minutes on. 1 hour off. Look into a game ready machine. Click on the products tab above. All PT should be done in a pain free zone. You don’t want to do anything to make you knee “angry.” You should try to see Dr Millett in Vail Colorado if at all possible. We hope this helps!
I had a TKR done this recent April by a well known orthopedic sports medicine surgeon here in Fla. When I was released from recovery shortly after surgery and taken to a private room in the orthopedic wing of my local hospital, I was in extreme pain in spite of a nerve block and pain management. I immediately knew something was not right with my right leg after this procedure was done and mentioned this fact to anyone who would listen. I basically was told that this was “normal” and that things would improve. The next morning, the orthopedic physical therapy people came to my room and asked me to try to stand up and walk to the door with their assistance. Upon getting up, my right leg immediately buckled and I almost fell. Gradually, I was able to make it to the door under duress and asked to be taken back to my bed, where I was placed in a CPM machine. I kept telling anyone who would listen, that my knee wasn’t right and that something internally wasn’t feeling right, with a lot of tightness, swelling, redness, and pain being very evident. I ended up staying in the hospital for 4 nights, with frequent, aggressive therapy being the norm. The pain was immense and unrelenting in spite of quite a few different pain medications, some, which I had to stop due to stomach problems. I had elected to do home therapy upon being released from the hospital, and was seen by a licensed physical therapist daily for the first 3 weeks of my treatment. He noted how quickly my knee would stiffen and swell upon completion of my therapy in spite of application of ice and a heating pad. This continued for a total of 5 weeks with little progress in ROM and flexion. When I saw my surgeon for follow up after the surgery, I mentioned what was going on with the knee, to which he suggested that I do outpatient physical therapy at his facility on site. I agreed to do this and immediately ran into problems with getting my knee to do what was required and requested. I was pushed beyond my pain limits, exhausted, and frustrated as my knee continued to limit my mobility. This continued for another month, with more than a few contentious moments between my therapists and I over how much I was being pushed beyond my pain tolerance in order to achieve the acquired degrees of flexion and ROM. Most of them were nice and offered encouragement regardless what I was dealing with. A few others where not so nice and suggested I “suck it up’ and ” don’t be a wimp” if I want to walk again. I decided that there was more to it than those kind of comments and went to see my surgeon again. My surgeon suggested I consider a total manipulation under anesthesia. He explained what this was and what it would do to help with ROM and flexion. I immediately agreed to this and scheduled a date for it to be done. When the procedure was completed, I was awoken in the recovery room of the hospital and immediately started screaming, the pain was incredible, unlike anything I had felt before. I begged the nurse to give me anything, it was that bad. When my surgeon was told of this development, it was decided that instead of this being an outpatient procedure, I would be admitted into the orthopedic wing. He told my wife that he had felt the scar tissue break and that he could manipulate my knee to 130 degrees. When I was released from the hospital 2 days later, my knee again, was an angry red, bent and swollen and very painful, with again limited ROM. After again, more outpatient physical therapy, for another month, with little improvement, I decided that enough was enough and went to see my surgeon again. He suggested that I give some thought into trying a different approach with a different type of therapy. I was told about a brace called a “JAS brace, which I wear for 30 min a session, 3 times a day. This brace is supposed to stretch the arthrofibrosis in my knee to the point of allowing me to gain more ROM via regular physical therapy. I made it clear to my surgeon that I was done with that type of therapy and have now modified my activities to purchasing a bike training stand and riding my bike stationary. At first, I couldn’t do it, instead half wheeling with my good leg. I am presently trying to get the other leg to do what the good one does and do a complete cycle on the bike. I continue to use the JAS brace as part of my therapy with some improvement. Right now, I don’t know what the future will bring, I’m not giving up, but I can tell you that my life style had completely changed since I was told that I have arthrofibrosis and which is the reason why my leg is the way it is. Before this procedure, I was 66 years young, enjoying hiking, playing in a senior softball league, going to classic car shows, etc. Now, I’m 66 years old, with a painful, swelling, bent leg, having to get around with the use of a cane and cursing myself for agreeing to have the knee replacement, even though it was probably necessary. That’s my story, for what it’s worth.
I am sorry to hear of so many people with arthrofibrosis problems. Have you heard about a machine called the Flexionator from the company ERMI? (http://getmotion.com/). At 7 weeks after TKR, my doctor recommended the use of this machine as I cannot bend past 60 degrees. This is a machine you can use at home to increase the ROM for your knee. It is used by professional athletes and they swear it works. The results are not instant, but over a period of 1-3 months, I am told the results are great.
My insurance company picked up the tab for the rental of the machine, and the ERMI does not make you pay a co-pay. I have only been using the machine for a week, but have hope this will help get my life back. I wanted to pass on the information. Ask your physician about renting one.
Hi Harry,
Thank you for sharing your story. I’m battling the same thing you are. Have you considered seeing Dr. Steadman in Vail? If it wasn’t for him, I’d be completely crippled. I cannot say enough about him.
Heidi Armstrong
http://www.injuredathletestoolbox.com
Agree with Heidi. Dr. Steadman got me out of a wheelchair and walking again although I limp. I have pain every day which I control with ice, massage amd OTC pain killers. Dr. S is a living miracle, honest and will not mislead you. I suggest people watch his interview with Charlie Rose by googling him.
S,
Sing it, Sister! I love his interview with Charlie Rose, but I can’t find it free online anymore. If you have the link, will you please send it to me: heidi@injuredathletestoolbox.com
Heidi
http://www.injuredathletestoolbox.com
Harry, how are you doing? I’ve been trying again to get enough flexion motion to do stairs normally. I’m 2.5 years post op from a TKR with arthrofibrosis issues. I’m thinking it may take something like you’ve described – some serious daily stretching time. So, how are you doing now? Did 30 min. daily do the job? If you did it over again, would you do it differently? Any comments about 15 minutes twice a day, 10 minutes 3 times a day – more time, less time?
My husband had a total knee replacement three months ago and like the others on this site is experiencing a lot of pain due to arthrofibrosis. His surgeon diagnosed this after a knee manipulation under anesthesia that didn’t work. He is now treating it with a JAS brace where my husband controls the amount of pressure to gain his range of motion. His doctor is very good, but I was wondering if there is another doctor in Florida who may treat arthrofibrosis as a specialty. He/she may be able to offer more suggestions in order to get his range of motion back.
Thank You,
Sorry your husband and you are going through this Carol. We only know of 2 doctors with significant experience treating AF after TKR:
Dr Noyes
Cincinnati SportsMedicine and Orthopaedic Center
10663 Montgomery Rd
Cincinnati, OH
Tel: 347-9999
http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
John David Blaha
Taubman Center Floor 2 Reception B
1500 E Medical Center
Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
1-800-211-8181
http://www.uofmhealth.org/profile/745/john-david-blaha-md
The closest AF specialist to Florida we know of is:
Dr Jason Folk
200 Patewood Drive #C100
Greenville, SC 29615
OFFICE (864) 454-SHCC
FAX (864) 454-8265
Dr. Folk is a sports medicine specialist with expertise in arthroscopy, including complex hip and knee repair and reconstruction. He is a graduate of the University of Texas Southwestern Medical School where he also served his residency. He completed his fellowship training at the Steadman Hawkins Clinic in Vail, focusing on arthroscopy, sports medicine, and knee and shoulder reconstruction. Dr. Folk is a physician for the U.S. alpine ski team.
http://steadmanhawkinscc.com/meet-our-doctors/jason-w-folk-m-d/
Dr. Steadman will also treat arthrofibrosis after a TKR, however he is particular about taking cases of this nature.
Heidi Armstrong
http://www.injuredathletestoolbox.com
Hello Foundation snd Thank You for your wonderful site!
I had right TKR 3/17/2014, & MUA and 3.5 months of PT. My ROM is stuck at 10/95 and HUGE pain and stiffness from day one. MUA only set me back in the stiffness and pain dept. and 2 months later, I am still at same flexion, no better! I was finally given the AF diagnosis recently.
I am also desperately searching for AF specialist (after Tkr is the problem)
I have called Dr J Folk in SC and was told most definitely that he does not take AF (after TKR) patients. I see that you have recommended him for this TKR patient and I am wondering if I have to try there again as maybe I got the wrong information from an uninformed employee? I was very specific with details and had the negative response. I also asked if he could at least recommend another OS that might be able to help and she replied with he “doesnt know of any” How is it that you recommend Dr. Folk, did he once take AF patients and maybe no longer does?
I will try again if you are sure he does.
I also tried Dr T. Gill in Boston and was told by his assistant that he does not take AF patients. (Are we that hopeless?) I also replied with a request for a recommendation and I am still waiting for a reply. HELP
I again thank you for any further/newer information.
Denise,
Possibly, the reason you’re encountering hesitance is because a TKR resulting in arthrofibrosis is considered its own issue, separate from arthrofibrosis as a result of any other trauma. Step 1 is to make sure that your prosthetic is the correct size and is placed properly. There are cases where arthrofibrosis arises because of an ill-fitting or ill-placed prosthetic. Not all orthopedic surgeons do TKRs (and/or revisions), so those doctors may be hesitant to see you.
These doctors would be good for your case:
1) Jay Rodrigo in Waco, Texas (yeah, I know…**Waco**). http://www.sw.org/Dr-Juan-J-Rodrigo
2) Fritz Boettner at the Hospital for Special Surgery in New York City
I know and have spent time with Dr. Rodrigo. He is an excellent surgeon and has the patience and disposition to work with cases like ours (not straight forward break-fix cases).
If you’re interested in seeing Dr. Rodrigo, email me at heidi@injuredathletestoolbox.com. I can call him and let him know you’re coming his way.
Heidi Armstrong
http://injuredathletestoolbox.com/optimal-recovery-from-chronic-injury-in-three-steps/
Denise,
Possibly, the reason you’re encountering hesitance is because a TKR resulting in arthrofibrosis is considered its own issue, separate from arthrofibrosis as a result of any other trauma. Step 1 is to make sure that your prosthetic is the correct size and is placed properly. There are cases where arthrofibrosis arises because of an ill-fitting or ill-placed prosthetic. Not all orthopedic surgeons do TKRs (and/or revisions), so those doctors may be hesitant to see you.
These doctors would be good for your case:
1) Jay Rodrigo in Waco, Texas (yeah, I know…**Waco**). http://www.sw.org/Dr-Juan-J-Rodrigo
2) Fritz Boettner at the Hospital for Special Surgery in New York City
I know and have spent time with Dr. Rodrigo. He is an excellent surgeon and has the patience and disposition to work with cases like ours (not straight forward break-fix cases).
If you’re interested in seeing Dr. Rodrigo, email me at heidi@injuredathletestoolbox.com. I can call him and let him know you’re coming his way.
Heidi Armstrong
http://injuredathletestoolbox.com/optimal-recovery-from-chronic-injury-in-three-steps/
You and your husband should seek a second opinion. There are joint replacement specialists who will remove the arthrofibrosis via arthroscopy. I had this procedure with complete success (although the first month of recovery is touch and go and requires avoidance of any PT that stirs inflammation). I also suggest the bonesmart.org forum.
Hello,
Greetings!
My father underwent TKR in the year 2010 and after 2.5 years he was diagnosed AF and he underwent MUA in the year October 2012, Everything was fine till now but again he is diagnosed with Artho-Fibrosis where the tissues have re-developed around Knee.
Could you please suggest a better solution for this and a doctor who treats better AF in INDIA.
Thank you in advance for your answer.
Rgds,
Amar
Sorry Amar, we do not know of any doctors in India.
I had arthroscopic removal of arthrofibrosis. It works! Here is a research article published by doctors in India: http://www.ncbi.nlm.nih.gov/pubmed/7880347
I slipped and broke my patella 4/2012, it has been a nightmare every since. Nine surgeries later I’m only able to extend about 10 degrees and flex about 78 degrees on a good day. Right after surgery it seems to be hope, I have good ROM but that disappears within a month and ROM declines. I have just come across sites tonight that give my condition a name. I read a site before finding this one and I believe it was reading from my medical record file. My question are there any Specialists in San Diego,CA area?
Sorry you are going through this Crystal. There are no orthopedic surgeons who specialize in arthrofibrosis in San Diego but there is a very good rheumatologist:
Dr. Ken Pischel
SCRIPPS CLINIC TORREY PINES
10666 N Torrey Pines Rd
La Jolla, CA 92037
PHONE NUMBER
858-554-8819
A rheumatologist at Scripps Clinic, Dr. Ken Pischel’s research and clinical interests include the mechanisms of inflammation and the pathophysiology of rheumatic diseases such as rheumatoid arthritis, lupus, vasculitis and osteoarthritis.
http://www.scripps.org/physicians/5004-ken-pischel-md-phd
But after 9 surgeries, maybe another surgery at this point is not the next step. A rheumatologist can attempt to treat inflammation with oral medications and injections. Since Arthrofibrosis is an inflammatory condition, a rheumatologist may give you some relief.
My husband had a total knee surgery on Aug 17, 2011. He developed AF but his doctor never did do anything, no MUA or arthroscopic surgery to try to correct or alleviate the situation. He has been in so much pain from day one until now and the pain medication only helps a little. The limited mobility made him homebound, he feels so depressed, and our quality of life have changed dramatically. We went to another doctor for a second opinion and he was diagnosed with AF and RSD. He had done therapies and nerve blocks but of little help/short acting relief. Then he is back to square one. We lived in Gilbert, AZ and I would like to know if you happen to know of a good doctor near our area that we can go to for my husband’s case. Thank you and appreciate any help and advice from you.
Sorry your husband and you are going through this. We only know of 2 doctors with significant experience treating AF after TKR:
Dr Noyes
Cincinnati SportsMedicine and Orthopaedic Center
10663 Montgomery Rd
Cincinnati, OH
Tel: 347-9999
http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
John David Blaha
Taubman Center Floor 2 Reception B
1500 E Medical Center
Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
1-800-211-8181
http://www.uofmhealth.org/profile/745/john-david-blaha-md
I have very little motion in bending my knee, when I sit my leg will remain extended. This condition just makes matters worse for me, Both my hips are dislocated, I also have scoliosis, so walking is very painful and very tiring, sitting or standing for long periods is very difficult. I walk with a cane which is now affecting my wrist. Please help, I live in Florida now, used to live in NY.
I have been living with this problem since 2003. Is there a doctor in Florida. I am tired and in total physical pain. Please help.
Search the website kneeguru.co/uk There is a tremendous amount of info on arthrofibrosis as well as a list of orthopedic surgeons with experience in dealing with arthrofibrosis.
Sorry you are going through this Irene. The closest AF specialist we know of is:
Dr Jason Folk
200 Patewood Drive #C100
Greenville, SC 29615
OFFICE (864) 454-SHCC
FAX (864) 454-8265
Dr. Folk is a sports medicine specialist with expertise in arthroscopy, including complex hip and knee repair and reconstruction. He is a graduate of the University of Texas Southwestern Medical School where he also served his residency. He completed his fellowship training at the Steadman Hawkins Clinic in Vail, focusing on arthroscopy, sports medicine, and knee and shoulder reconstruction. Dr. Folk is a physician for the U.S. alpine ski team.
http://steadmanhawkinscc.com/meet-our-doctors/jason-w-folk-m-d/
Please go to http://www.getmotiom.colm
ERMI (End Range of Motion Improvement, Inc.) is a range of motion device company based out of Atlanta, GA. Since 1991, these devices have been helping patients who suffer from motion loss of the knee, ankle, shoulder and elbow. These patient controlled devices are for patients that are stalling with traditional PT methods. ERMI devices are specifically designed to mimic physical therapy in the home for 1 hour per day, to prevent scar tissue formation. ERMI devices are ultimately used to avoid costly manipulations. They are used immediately after a motion restoring procedure to ensure the best functional outcomes.
Had arthrofibrosis in 2009 after left knee ACL recon in 2005. Had serious extension and flex deficits in left knee. Went to see Dr. Dragoo at Stanford and he performed a “bloodless” surgery where scar tissue was released without disturbing blood vessels. Knee has almost 0 degree extension and fairly good flex. What helped was the countless hours of knee exercises every day and the mental strength to have faith that it would help and it did. Also, I started going to the gym regularly to strengthen the calves, quads, hams. Back to playing tennis and basketball after so many years of suffering.
I had tkr in 09 followed by mua then lysis and revision finally in 2011. Surgeon commented on heavy scarring. I can’t straighten my leg out and am in constant pain. Recently diagnosed with patella baja. The new ortho surgeon recommends doing an alteration to the femoral component to re-establish my joint line. I feel that this is more likely an issue with arthrofibrosis. I’m in the Orlando FL area. Please recommend someone.
Sorry you are going through this. We only know of 2 doctors with significant experience treating AF after TKR:
Dr Noyes
Cincinnati SportsMedicine and Orthopaedic Center
10663 Montgomery Rd
Cincinnati, OH
Tel: 347-9999
http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
John David Blaha
Taubman Center Floor 2 Reception B
1500 E Medical Center
Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
1-800-211-8181
http://www.uofmhealth.org/profile/745/john-david-blaha-md
Bilateral tkr dec 26 2012 right leg arthrofibrous need to release need help. Should I have orthopedic
Dr release it with arthro surgery or I there omens special in the boston area thank you
Sorry you have AF Carolyn. The only doctor we have have heard of in Boston is Dr.Thomas J. Gill, but we do not know if he has much experience with TKR. Here is his contact info:
Thomas J. Gill
MGH Sports Medicine Center
175 Cambridge Street
4th Floor
Boston, MA 02114-2723
Phone: 617-726-7797
Fax: 617-726-6950
http://www.massgeneral.org/doctors/doctor.aspx?id=16864
Hi,
I was searching the web about cases of arthrofibrosis and this site seems interesting. However, I am not from the US and just wondering if you have any sister organization or any partnership with some other organization that helps patients with AF problem.
I do have problem with my knee after ACL reconstruction and after a 2nd release of arthrofibrosis there was no luck at all.
Thanks!
Sorry Alvic, we do not have a sister organization or a partnership with an international organization.
My full story of my 2.5 year battle with arthrofibrosis can be found here:
http://injuredathletestoolbox.com/why-i-understand/
I had a femur tumor resection in 2011 since I have had 5 surgeries on my right leg. Prior to my first surgery I was riding 30miles a day, I have no rode my bike since 1/2013. I have been diagnosed with arthrofibrosis. I would love some tips on how to get on my bike again. This really sucks.
Patty,
Have you considered visiting the Steadman Clinic in Vail? Dr. Steadman is the best in the world.
All My Best,
Heidi
http://www.injuredathletestoolbox.com
Hi Heidi,
Your story really resonated with me. So many things in common. I have had 10 surgeries on my left knee, from scopes, ACL repairs, total knee, total knee revisions, and manipulation under anesthesia. I am finally in Chicago to see a specialist on scar tissue. It was not discovered until after my TKR 4 years ago. I am praying I don’t have to have as many surgeries as you to fix the problem, but its good to know there is some hope for me even if I have to endure more surgery. I have carved out a life for myself in my current condition. I work out 5 days a week (premedicated with pain meds of course), mostly zumba, walking on the treadmill, and body sculpting. I can’t ride a bike, nor can I wallk, sit, or stand for more that 15 minutes without pain in my knee and IT band. I also get a lot of swelling in my knee and my foot tingles and becomes hyper sensitive. I have not been able to work since 2012 so I do travel a bit more, but I would like to not have a limp, possible wear a small heal, and definitely not be in pain and taking pain meds whenever I want to exercise, travel, or take a walk.
Thanks so much for giving me hope!!!!
Joe, we are so sorry you are going through this. We recommend that you contact an AF specialist. Click on the ” Practitioners” tab for their contact information. We don’t know of any specialists in PA so you will have to travel. We are sorry to say this, but please keep in mind that after 32 surgeries, even an AF specialist may not do another surgery and another surgery may not be the next step. We suggest that you click on the “Products” tab, read the books on how to reduce inflammation and look into the products such as Udo’s Omega 3-6-9 oil. You should also look for a rheumatologist.
We did a quick search for rheumatologists in PA that may be able to help treat an inflammatory condition like AF and the following doctor treats Inflammatory Myopathies:
Joseph L. Enama, M.D.
Penn State Hershey Rheumatology
500 University Drive
Hershey, PA 17033
Tel: 800-243-1455 / 717-531-5384
Fax: 717-531-8274
http://www.pennstatehershey.org/rheumatology
The Penn State web site also explains that Penn State Hershey Rheumatology physicians diagnose and treat arthritis, immune disorders of muscles, connective tissue diseases, and a variety of soft tissue inflammatory conditions.
Specific conditions that are evaluated include rheumatoid arthritis, systemic lupus erythematosus, spondyloarthropathies, vasculitis, gout, infectious arthritis, scleroderma, osteoporosis, and inflammatory muscle diseases.
Consultation and ongoing clinical care are offered. This division is active in research studies of rheumatologic disorders, autoimmune, and experimental therapeutics. Penn State Hershey Rheumatology also provides extensive patient education.
Penn State Hershey Rheumatologists have received numerous awards for their participation in Central Pennsylvania Arthritis Foundation educational activities and projects.
The following doctor treats inflammatory arthritis, Crystal induced arthritis; Pathogenesis and treatment of synovitis; osteoarthritis; synovial fluid; ankylosing, spondylarthropathy:
H. Ralph Schumacher
Professor of Medicine
HUP Clinic: 8 Penn Tower
34th & Civic Center Boulevard
Philadelphia, PA 19104
VA Medical Center, Arthritis Clinic
University & Woodland Avenues
Philadelphia, PA 19104
Office: 215-823-5979
Fax: 215-823-6032
Email: schumacr@mail.med.upenn.edu
The Penn website says that Penn rheumatologists are known nationally and internationally for their clinical expertise and research scholarship. Many faculty members serve as chairs and committee members of national and international rheumatology organizations including the American Association of Immunologists, the American College of Rheumatology and the National Institute of Arthritis, Skin and Musculoskeletal Diseases.
Rheumatology at Penn Medicine has a long and distinguished history. Penn physicians pioneered the study of arthritis and wrote many of the early American textbooks on rheumatic diseases. This rich tradition of clinical excellence continues today. Penn rheumatologists evaluate and treat autoimmune diseases and conditions of the musculoskeletal system. Their driving mission is to deliver outstanding care to patients, superior education to trainees and to further the advancement of rheumatology treatment through research.
Locations & Physicians
Ruth and Raymond Perelman Center for Advanced Medicine
(On the campus of the Hospital of the University of Pennsylvania)
1st Floor, Suite 300S
3400 Civic Center Boulevard
Philadelphia, PA 19104
Penn Presbyterian Medical Center
3910 Medical Building, Suite 200,
3910 Powelton Avenue
Philadelphia, PA 19104
Pennsylvania Hospital
800 Spruce Street
Pine Building, Suite 1C
Philadelphia, PA 19107
Penn Medicine Radnor *
250 King of Prussia Rd
Radnor, PA 19087
Penn Medicine Valley Forge
1001 Chesterbrook Boulevard
Berwyn, PA 19312
http://www.pennmedicine.org/rheumatology/locations.html
We hope this helps!
I tore my ACL and meniscus in a ski accident 1/21/13, surgery 2/13/13 and scope and manipulation 4/8/13. I have swelling and obvious scar tissue growth surrounding the incisions near the joint. I go to PT 3 times a week, it is aggressive per my orthopedic surgeon. My knee cap is losing what little mobility it had; I am lucky to extend to 5 and fight for 115 flexion. I suspect arthrofibrosis, but am unsure how to address it. I live about an hour from Pittsburgh, PA…
We are very sorry to hear about your ski accident. We strongly recommend that you contact Dr Millett’s or Dr Shelbourne’s office as soon as possible. Dr Noyes is another possibility. Click on the ” Practitioners” tab for their contact information. We don’t know of any specialists in Pittsburgh so you will have to travel. If you need financial assistance, please apply for an Arthrofibrosis Foundation grant.
Hi Teresa,
How are you doing now? Did you seek treatment? If not, let me know and I can provide you with guidance.
All My Best,
Heidi Armstrong
http://www.injuredathletestoolbox.com
My 17 year old daughter had Acl Reconstruction and Meniscus repair after a sports injury in December. She has severe AF and has had 2 manipulations with clean out and capsular release in the last 3 months. Starting PT same say as surgery and she attends 3 days a week. Looking at a fourth surgery in 5 months. Any recommendations. We’re located in Las Vegas, Nevada
We are really sorry to hear about your daughter. We strongly recommend that she sees an AF specialist and that you contact Dr Millett’s or Dr Shelbourne’s office as soon as possible. Click on the ” Practitioners” tab for their contact information. We don’t know of any specialists in Vegas so you will have to travel. If you need financial assistance, please apply for an Arthrofibrosis Foundation grant.
I am so thankful that I found this site. With the help of a grant from the Arthrofibrosis Foundation we were able to make the trip to Vail to see Dr. Millett and his team. After a complete exam and medical record review it was determined that another surgery will be needed. We are confident that my daughter will be in great hands at the Steadman Clinic and she will get the specialized care that is needed to treat her Arthrofibrosis.
There are not alot of Orthopedics out there with the knowledge to treat this condition. The Arthrofibrosis Foundation has provided us with a great deal of information and support. I can not wait to provide update as we continue this journey.
MK,
I hope your daughter is doing well and that she found some relief from her AF. Will you please let us know how she is doing?
Hi everyone, I had NO Idea this foundation even existed..My original injury was a torn ACL 1986, the pain from the stiffness and from the 32 surgeries on my left knee only, all Arthrotomies…Please, is there someway of helping me get some form of Quality life back, I hope you can help me…I wouldnt be afraid to bet that MY Case will be one of the Most Difficult to remedy and I also hope I am WRONG. Please HELP ME, I want to play with my grandchildren and cant..Here is also my cell number (570) 933-1130 Eastern Time…
SINCERELY,
Joe McGinley
1201 Poplar St
Kulpmont, Pa, 17834
570-933-1130
I had TKR surgery Dec 10 2012 and have range of motion between 64 and 74 with therapy assistance. I have been told by a second opinion that is arthrofibrosis. He did not give me the confidence that he could deal with this issue. I would like to know if there are any Dr. in the Omaha NE or surrounding area that are in the handful of surgeons you mentioned.
Thank you for any help you can give.
Sorry you are having problems. We only know of 2 doctors with significant experience treating AF after TKR:
Dr Noyes
Cincinnati SportsMedicine and Orthopaedic Center
10663 Montgomery Rd
Cincinnati, OH
Tel: 347-9999
http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
John David Blaha
Taubman Center Floor 2 Reception B
1500 E Medical Center
Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
1-800-211-8181
http://www.uofmhealth.org/profile/745/john-david-blaha-md
I’m still needing to know if there is a specialist in the Denver area. Thanks.
We hope your surgery went well!! Dr Millett is one of the most experienced (and one of the very best) doctors treating AF but his experience with AF after a TKR may be limited. Since he is close to Denver, we would highly recommend that you contact his office.
Dr Millett
The Steadman Clinic – Vail, CO
181 West Meadow Drive, Suite 400
Vail, CO 81657
Phone: (970) 476-1100
Fax: (970) 479-5835
We have found that seeing a rheumatologist can be very helpful and you are in luck, one of the best is in Denver ( but it can take awhile to get an appointment):
Kathryn Hobbs, M.D.
200 Spruce Street,
Suite 100
Denver, CO 80230
phone 303.394.2828
fax 303.320.0242
http://denverarthritisclinic.com/our-providers/kathryn-hobbs-md
I had a TKR 2/26/13 and I am having MAU tomorrow by my orthopedic surgeon. I’m pretty concerned about the outcome despite his optimism. I live close to Denver and wonder if there is a specialist near if needed.
Thanks!
We hope your surgery went well!! Dr Millett is one of the most experienced (and one of the very best) doctors treating AF but his experience with AF after a TKR may be limited. Since he is close to Denver, we would highly recommend that you contact his office.
Dr Millett
The Steadman Clinic – Vail, CO
181 West Meadow Drive, Suite 400
Vail, CO 81657
Phone: (970) 476-1100
Fax: (970) 479-5835
We have found that seeing a rheumatologist can be very helpful and you are in luck, one of the best is in Denver ( but it can take awhile to get an appointment):
Kathryn Hobbs, M.D.
200 Spruce Street,
Suite 100
Denver, CO 80230
phone 303.394.2828
fax 303.320.0242
http://denverarthritisclinic.com/our-providers/kathryn-hobbs-md
I have arthrofibrosis following a TKR. Do you have any specialist in Houston,TX? Thanks!
No sorry. We only know of 2 doctors with significant experience treating AF after TKR:
Dr Noyes
Cincinnati SportsMedicine and Orthopaedic Center
10663 Montgomery Rd
Cincinnati, OH
Tel: 347-9999
http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
John David Blaha
Taubman Center Floor 2 Reception B
1500 E Medical Center
Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
1-800-211-8181
http://www.uofmhealth.org/profile/745/john-david-blaha-md
Robert,
I am in Houston. I have artthrofibrosis I would like to speak with you concerning what steps you have taken as of today. Please email me if you have an interest in talking
Gary,
I’m in Austin. There isn’t anyone in our area that treats arthrofibrosis properly from a surgical perspective. I recommend calling The Steadman Clinic and setting up an appointment with Dr. Steve Singleton. He took over Dr. Steadman’s (who has been my surgeon since October 2011) surgical practice and did my surgery 3 weeks ago. He is every bit as patient, present, and skilled as Dr. Steadman, and a very worthy successor.
Heidi
http://www.injuredathletestoolbox.com
AF after a TKR, aggressive PT then a MUA, which did not help. I then had a total knee revision about a month later. After aggressive PT and daily visits by a nurse as well as several machines to help with the range a motion I only have a 40 degree flexion. Its been two years and several consultations with doctors who all agree not to touch me in fear of loosing the straightening of my leg. I just turned 52 and my life has totally changed as I live in pain everyday and have a leg that will not bend more than 40 degrees…
Any suggestions? I live in Los Angeles California and have been looking for someone who understands AF. Thanks
We are so sorry that you are going through this! All PT should be in a pain free zone. “Aggressive PT” can cause more inflammation. Unfortunately, we understand that treating Arthrofibrosis (“AF”) with a TKR is more challenging than AF in a normal joint. We only know of 2 doctors with significant experience treating AF after TKR:
Dr Noyes
Cincinnati SportsMedicine and Orthopaedic Center
10663 Montgomery Rd
Cincinnati, OH
Tel: 347-9999
http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
John David Blaha
Taubman Center Floor 2 Reception B
1500 E Medical Center
Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
1-800-211-8181
http://www.uofmhealth.org/profile/745/john-david-blaha-md
There is an AF doctor in Northern California, but we don’t know if he has experience with AF in TKR.
Colin Eakin, M.D.
Palo Alto Center
795 El Camino Real
Palo Alto, CA 94301
Main phone: 650-321-4121
http://www.pamf.org/sports/staff/eakin.html
If possible, you should see one of these doctors. In addition, you should try to limit or reduce inflammation every way you can. Ice, and elevate as much as possible. Try an anti-inflammatory diet and Udo’s 3-6-9 oil. Look at the products and books listed on this website. There is evidence that Omega 3′s can reduce pain and inflammation. You should also find a rheumatologist. There may be medications or injections that may help.
I have been suffering from arthrofibrosis since 2010. This was the last major knee surgery I had. It all started in 2008 when I had a rt. medial partial knee. This surgery was painful from the start. Come to find out later the joint was put in on an angle and was digging into my knee cap for a year. When that was discovered the next doctor did a total knee replacement and that had problems from the start. Come to find out later, the pain that I was having from the first partial knee, the doctor told me to tape the knee cap over which caused all this pressure on the rt. lateral knee. Anyway, I feel it changed the whole dynamic of my knee and it would not hold the total knee replacement in place. It was so extremely unstable it just flopped around in my knee space, of course causing a lot of pain. Well the next Dr. told me the knee was totally unstable and needed to be stabilized. He goes in there March 2010 and put these rods and whatever in there, still had horrible pain. Well a couple months later he says basically he forgot to do something and went back in there again. Well finally it felt pretty decent until the physical therapist treated me like a new knee and worked the heck out of it and blew that out of the water. Now it is 2013, the pain is practically unbearable. Every modality that I try just makes the pain and ROM worse. I feel like my life has been taken away from me. I never leave the house. I am so depressed because I feel that I may have to live the rest of my life like this. I am constantly taken pain meds. that really just takes the edge off, very temporarily. I have a profoundly handicapped 32 daughter that I have been unable to take care of and I refuse to put her in a facility. She has only lived this long because of the wonderful care and love that she gets in her home. I just feel there is no hope for me. There was a mention of Dr. Blaha out of U of M. If this is at all treatable I want to go to a physician who specializes in this kind of disorder. HELP!!
We are so very sorry that you are going through this! Unfortunately, we understand that treating Arthrofibrosis (“AF”) with a TKR is more challenging than AF in a normal joint. We only know of 2 doctors with significant experience treating AF after TKR:
Dr Noyes
Cincinnati SportsMedicine and Orthopaedic Center
10663 Montgomery Rd
Cincinnati, OH
Tel: 347-9999
http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
John David Blaha
Taubman Center Floor 2 Reception B
1500 E Medical Center
Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
1-800-211-8181
http://www.uofmhealth.org/profile/745/john-david-blaha-md
If possible, you should see one of these doctors. In addition, you should try to limit or reduce inflammation every way you can. Ice, and elevate as much as possible. Try an anti-inflammatory diet and Udo’s 3-6-9 oil. Look at the products and books listed on this website. There is evidence that Omega 3’s can reduce pain and inflammation and depression. All PT should be in a pain free zone. “Aggressive PT” can cause more inflammation. You should also find a rheumatologist. There may be medications or injections that may help.
In January of 2010, I had a TKR of the left knee. There were complications right away. It just didn’t feel right. When I went for my first follow-up appointment, I was told I had massive scar tissue. I was in physical therapy for a long time. To make a long story short, I had a second KR in Feb. of 2011 and a smaller component was used. Same thing – scar tissue build up right away even after the doctor spent an hour removing the old scar tisse. I have had three manipulations under anthesia and arthroscopic surgery all to no avail.
I am totally discouraged as a result of how Arthrofibrosis has changed my life. It has turned me into and “old” 67 year old. I can no longer do the activities I used to do – nice, long walks, aerobics, exercise classes. I walk with a noticeable limp. The slightest movement or even rubbing gels or ointment on the knee causes the scar tissue to tighten up.
It has been three years since I have been able to wear hosiery. I can’t wear regular dress slacks or my suits with knee length skirts because they irritate the knee (and also the knee would not be a nice sight to behold) so I pretty much wear long skirts most of the time to camouflage my bulging knee. I can’t even line my feet/legs up together because the left leg protrudes at least 6-12 inches from the right leg. The winters get pretty cold here and with skirts, the knee just gets tighter. Occasionally I will wear yoga/sweat pants to work with a nice jacket.
My life has totally changed since Jan. 2010. My orthopaedist has done all he can and he still sees me. I am now dealing with Hyalgen injections in my right knee because it is starting to bother me. There is no way I could have a TKR on this one because I would pretty much be a totally crippled if I did because we’re 99.9% sure that I would have the same problem with scar tissue in this knee.
Because of life circumstances, I must continue to work. There are no specialists in Arthrofibrosis here in the Rochester NY area. My insurance company finally let me go out of network to Hospital for Special Surgery in NYC. The doctor there said he would have done everything my current orthopaedist did. The insurance company would not allow me to go back for further treatment – just a consultation. I tried to pursue it, but finally got so tired of dealing with the whole matter that I gave up.
The nice weather will be here soon and I don’t walk well with a cane. My doctor has prescribed a rollator which I plan to pick up this week because it is pretty much like pushing a grocery cart which takes a lot of pressure off the knee.
I don’t know why I’m rambling on and on, but since I saw your website and read about Dr. Noyes in Cincinnati, I just thought I would post these comments.
I guess I’m pretty much doomed to live the rest of my days like this and pray that the right knee doesn’t get much worse.
Thank you for listening.
Knee replacement 10-23-2012, 2 MUA December 2012 and January 2013. ROM – ext: 25-30 (15 with person on top of leg pushing), Flex – 95 (102 with person on shin pushing). PT, have reached what they think is all they can do. Is more PT going to help or continue to form more scar tissue, till the knee freezes up? I would really appreaciate any suggestions on what I might do. Also on codone for long period of time, major loss of muscle mass and weight. I’m struggling
We are so sorry you are suffering with Arthrofibrosis. It is very important that you see a doctor that has extensive experience with AF and AF in a TKR patient if possible. We understand that Dr Noyes in Ohio has substantial experience with AF in TKR patients:
Cincinnati SportsMedicine and Orthopaedic Center
10663 Montgomery Rd
Cincinnati, OH
Tel: 347-9999
http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
Aggressive ( painful) PT is not recommended in most AF cases. You don’t want to do anything that makes the knee red, hot, and swollen.
Where are you located?
Northern Virginia, about 17 miles from the White House.
Unfortunately, you are going to have to travel from Northern Virginia to see a specialist. Since the treatment of Arthrofibrosis requires very specialized care and there are only a handful of orthopedic surgeons in the world who have a significant amount of experience treating this condition, many AF patients travel long distances to be treated. This is one reason the Foundation was established. We have also heard very good things about Dr. John Blaha. He has experience with arthrofibrosis in TKR.
John David Blaha
Taubman Center Floor 2 Reception B
1500 E Medical Center
Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
1-800-211-8181
http://www.uofmhealth.org/profile/745/john-david-blaha-md
Where did you have your surgery? Have you sought a second opinion such as at the Anderson Clinic? I am sure someone in the D.C. area performs arthrolysis (arthroscopic lysis of arthrofibrosis). You need to call around and see who does. Another idea: JohnHopkins.
I am suffering from arthrofibrois after a total knee replacement 8 months ago and would like to find a doctor in North Carolina to help me with this problem. I would appreciate any help in this matter. Thank you…..Kay Roach….
We are so sorry you are gong through this. We do not know of an experienced Arthrofibrosis specialist in North Carolina but there is a Steadman clinic in South Carolina:
Dr. Jason W. Folk
Steadman Hawkins
Clinic of the Carolinas
200 Patewood Drive #C100
Greenville, SC 29615
OFFICE (864) 454-SHCC
FAX (864) 454-8265
We understand that Dr Folk is very experienced with AF. Dr. Folk is a sports medicine specialist with expertise in arthroscopy, including complex hip and knee repair and reconstruction. He is a graduate of the University of Texas Southwestern Medical School where he also served his residency. He completed his fellowship training at the Steadman Hawkins Clinic in Vail, focusing on arthroscopy, sports medicine, and knee and shoulder reconstruction. Dr. Folk is a physician for the U.S. alpine ski team. http://steadmanhawkinscc.com/meet-our-doctors/jason-w-folk-m-d/. We are not sure of his experience with TKR.
We understand that Dr Noyes in Ohio has substantial experience with AF in TKR patients.
Cincinnati SportsMedicine and Orthopaedic Center:
10663 Montgomery Rd
Cincinnati, OH
Tel: 347-9999
http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
We realize that you were looking for a doctor in North Carolina, but there may not be a doctor in North Carolina with extensive experience dealing with Arthrofibrosis in TKR patients. Since the treatment of Arthrofibrosis requires very specialized care and there are only a handful of orthopedic surgeons in the world who have a significant amount of experience treating this condition, many AF patients travel long distances to be treated. This is one reason the Foundation was established. We hope this helps!
I’m adding an affirmation for Dr. Frank Noyes. He was my surgeon this past January for TKR. He’s treated me through this challenging time as I developed AF. His practice works closely with the PTs I see even making “rounds” weekly among the PT patients. Working with my PT he suggested Blood Restriction Therapy who’s has been helpful for strengthening but has helped to not inflame the knee more. He’s tried several therapies during the time I’ve been recovering and getting my ROM. He recently referred me to a Rheumatologist he works closely with. I saw her yesterday. She drained fluid from my knee, injected steroid and put me on 5 medications. They include Methotrexate, Prednisone, a NSAID, Metformin, and Folic Acid. This is a protocol that she’s done for several of Dr Noyes’ patients with great results. The research on this is coming mostly out of Duke University.
Patients come from all over the country to see Dr. Noyes and he does do surgery for many AF patients. In my case he wouldn’t be willing to do that on me before a year and a half. He preferred for me to try the medication route first.
His office moved this winter and he is now located at:
Mercy Health-Cincinnati Sports Medicine
4700 E Galbraith Rd, Suite 300A, Cincinnati. Ohio 45236
513-347-9999
He does Virtual Visits as well.
I have recently moved to the Washington / Baltimore area and would like to know if there are any doctors in the area that could help me with arthrofibrois?
I also went to the area thinking I was going to Johns Hopkins, however I saw a specialist at Sana’a Hospital. Dr. Delanois. He is the only doctor in & years, besides the Steadman Clinic, that has ever heard of AF. I thought he was fabulous. Look him up