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.


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1156 comments posted

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  16. 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

  17. 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!!!!

  18. 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?

  19. 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 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?

  20. 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! ❤️

        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.

  21. 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.

    • 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!

  22. 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.

  23. 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.

  24. 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!

  25. 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.

  26. 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.!

  27. 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.

  28. 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 if you need anything else!

  29. 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!

  30. 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.

  31. 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.

  32. 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.

  33. 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.

  34. Looking for arthrofibrosis ortho surgeon specialist ideally with expertise in biologic/regenerative medicine techniques.

  35. 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.

    • 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.

  36. 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.

    • 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.

  37. 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.

  38. looking for a doctor in Central NJ who specializes in treatment of arthrofibrosis following full knee replacement

  39. 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!

  40. 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.

  41. 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

  42. 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.

  43. 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.

  44. 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

  45. 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.

  46. 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.

  47. 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.

  48. 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!

  49. 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.


  50. 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.

  51. 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,

  52. 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.

    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.

      • 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.


        • 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!

  53. 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.

    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.


      • 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.

  54. 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.

  55. 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

    • 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.


        • 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.

  56. 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.

  57. 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 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.

    • 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.

  58. 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.

  59. 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!

      • 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.

      • 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

  60. 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. )

  61. 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!

  62. 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!!!

  63. 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!

    • 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!

    • 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
      The Noyes Knee Institute
      Mercy Health-Cincinnati Sports Medicine

  64. 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.)

    • 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.

    • 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.

    • 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.

  65. 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.

  66. 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!

  67. 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

  68. 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.

        • Hello Becky

          What medication treatment protocol was used for your knee??

          Thanks so much for sharing.


  69. Do you know of any specialists in Australia who have had success with Arthrofibrosis of the knee after TKR?

  70. 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.

  71. 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.

        • 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.

  72. 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?

  73. 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.

  74. 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,

    • 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!

        • 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.

  75. 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?

  76. 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

  77. 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.

  78. 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.

    • 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.

  79. 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.

  80. 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!

  81. 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 🙂

  82. 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.

  83. 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.

  84. 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

  85. 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.

  86. 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
 and referenced you. Donna responded almost immediately saying your a good example of there program!
          Already reading Dr Noles AF book on Amazon……… 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”


                  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…

  87. 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.

        • 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!

  88. 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

    • 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

    • 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 %

  89. 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?

  90. 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…

  91. 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.

    • 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!

            • 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!

  92. 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.

    • 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.

    • 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)

  93. 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!

  94. 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.

  95. 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.

  96. 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.

  97. 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.

  98. 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.

  99. 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

  100. 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.

  101. 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.

    • 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.

  102. 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!

    • 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.

  103. Facebook has an Arthrofibrosis page. There are some inspiring stories of recovery, if anyone is interested.

  104. 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

  105. 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.

      • 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-

  106. 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.

  107. 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.

  108. 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.



      • 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

  109. 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.

  110. 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.

    • 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.

  111. 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.

      • 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!

  112. Hallo
    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

  113. 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!

  114. 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

  115. 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.

    • 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.

  116. 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: ;Internet:
    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
    .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!

  117. 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.

  118. 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 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.

  119. 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.

  120. 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.

  121. 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,


    • 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-

      • 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:

        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!


  122. 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.

  123. Amazon sells Trebinese and Serrasota v 360 for dissolving scar tissue. Two bottles, $200., a one month supply.

    Anyone try it?

  124. 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.

  125. 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.

      • 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.

  126. 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.

  127. 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.

  128. 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.

  129. 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

    • 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.

  130. 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.
    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:

  131. 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?


    • 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


  132. 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

    • 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.

  133. 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.

  134. Anyone ever tired ultrasound treatments to break up scar tissue. If so,
    how did it work and the contact info for the medical providers

  135. 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 (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 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!

  136. 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?

  137. 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?

  138. 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 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.

  139. 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!

  140. 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.

  141. 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:(

  142. 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.

  143. 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

  144. 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 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


    • 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?

  145. 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.

  146. 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


      • 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.

  147. 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!

  148. 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.

  149. 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

  150. 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?

  151. 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.

  152. 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……

  153. 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.

  154. 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

  155. 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.

  156. 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.

      • 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!

  157. 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?

  158. 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.

  159. 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..

  160. 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.

  161. 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!!

  162. 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.

  163. I have arthrofibrosis after a tkr. My orthopedic surgeon just referred me to a pain management doctor. What should I expect?

  164. 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 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?

  165. 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.

    • 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.

  166. 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?

  167. 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.

  168. 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.

    • 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

  169. 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 :

    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