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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962 comments posted

  1. 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!

  2. 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!

  3. 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

  4. 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!

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

  6. 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.

  7. 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.

  8. 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?

  9. 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.

  10. Are there any AF specialists in the Boston,MA area that work with patients that have had a TKR and MUA? I’m almost one year from my TKR, and continue to be sidelined by my arthrofibrosis. I’m 58, and can no longer participate in the activities that I used to.
    Many thanks,
    Maura

    • Hi Maura. I’m from Boston and we interviewed several local surgeons trying to find someone with arthrofibrosis experience for my revision surgery. You would expect that Boston would have someone but unfortunately not. We had no luck whatsoever- we knew more about the options from our research than the surgeons we interviewed!. We then started a national search. The closest surgeon we found with relevant expertise was David Mayman at HSS in NYC, who has an excellent reputation and has run several trials on reducing regrowth after revision surgery. I ultimately chose to go to Cincinnati to Frank Noyes where I had an excellent result. He is the leading guy nationally in the arthrofibrosis world ( the other group is in Colorado but unfortunately they won’t work on you unless they did the initial joint replacement). I had a very severe case- was disabled and couldn’t walk without a cane. I am now hiking, biking, etc. I had minimal regrowth fortunately. So I’m glad I looked around. I hope that is helpful!

        • 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

    • 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.

  11. 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?

  12. 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

  13. 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.

  14. 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.

  15. 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.

  16. 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!

  17. 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 🙂

  18. 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.

  19. 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.

  20. 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

  21. 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.

  22. I knew Finn was a crap-shoot. And I accept full responsibility for the outcome.
    But his “team” are a bunch of weirdos. Finn & his minions are myopic. Like most “specialists” they work in a bubble.
    The implant he puts in is enormous and after you get it- there is no going back.
    When he put his “Finn Knee” (when I was opened) I only had 120 degree ROM.
    I can NEVER get better than 120.
    Get a second opinion from Dr. Frank Noyes- because they are watching the new stuff coming down. They are open to new options.
    Dr. Finn believes he has found the “answer” and is not open to recent findings.
    I would have been better not getting a “Finn Knee.”
    I’m permanently disabled thanks to his “Finn Knee.”

    • I have never written a bad review of Dr. Finn, but after reading your comments, I can’t let it go. I also thought Dr. Finn would be the miracle doctor that would get me out of horrible, 24/7, pain. The
      surgery/Finn Knee, was unsuccessful. I had the original TKR in New Jersey – Dr. Pizzuro destroyed my knee. I was black& blue from my waist to my toes. Horrific pain for months. I still have constant pain. During staple removal, I actually saw stars. The nurse told me I was being over-dramatic. p.s. – he’s no longer practicing
      Then 2 revisions. the last being in Chicago. At my initial visit with Dr. Finn I absolutely told him that I had a revision and scar tissue removal, and an MUA, but within 2 weeks my scar tissue builds up and cannot be budged. He did not believe me. As expected, scar tissue developed….tremendous amount of pain, Dr. Finn preformed a MUA….he was so determined to bend my knee that he tore a muscle in my knee. I was in and out of the hospital 3 times after that because the bleeding caused by that torn muscle would not stop. THEN Dr. Finn came to my room in the hospital, ON A SATURDAY, told me he needed to stitch the torn muscle, and so that I didn’t have any anesthetic medication, or it just didn’t work. It was so horribly painful! I went to Chicago from New Jersey. Each time I spoke with Dr. Finn, he said , I” I know you want to get back to NJ.” I ALWAYS responded, “if you can help me, I will stay as long as needed.” He could not admit that my surgery was a failure. I stayed in a hotel in the Chicago area for 6 weeks! I think his Office Manger’s name was Betty….dealing with her was ALWAYS an issue.

      • Not to lay it on thick here, but when my husband and I interviewed a bunch of surgeons for my revision surgery ( see prior posts) we would ask them their opinions of other surgeons in the field. They were all very careful not to directly criticize another surgeon, However, it was quite clear that the consensus was that his approach was too experimental/ unproven/ aggressive. We actually cancelled our planned consult with him as a result.

        Sadly, there currently does not exist a “ cure” for this disorder, and all the surgeons were quite clear that any intervention was “ last resort” with no guarantees. Given that state of play, it is very, very tempting to try a new approach which appears to have promise. Unfortunately, after hours of research and given my own experience, I think surgical removal / release of the bound -down tissue, followed by intensive ( but very light and targeted) PT, combined with anti inflammatory meds , is the best we have at the moment. It isn’t a “ cure”, but at least as the scar tissue grows back ( and it absolutely will to some extent or another), if you keep it stretched and pliable, you will have better ROM and less pain ( but you will not regain full flexibility or be pain free). It is hard to accept this, but I honestly think that is where we are. That said, I am bike riding and hiking- I have to take rest days in between, I am still icing/ dealing with pain and doing pt, and when really, really bad, I’ll do a course of prednisone. Not what I was expecting or hoping for when I got the initial TKR, but it is what it is…and better than nothing!

        • Thanks Robin you are most informative.
          I reached out to Dr Noles clinic for an appointment….at
          https://noyeskneeinstitute.com/ and referenced you. Donna responded almost immediately saying your a good example of there program!
          Already reading Dr Noles AF book on Amazon………..wow learning a lot more.
          Am 15 months out from TKR and suffered AF since. Now have a growing concern that I need to get active in PT/AF treatment so the AF does not get much worse..
          The TKR also accelerated my Peripheral Neuropathy limiting PT.
          My Peripheral Neuropathy is now improving from MSC Stem Cell Treatment
          in Mexico (Oct 2021). Also had an injection of collagenase and hyaluronidase for AF….in
          Mexico (Oct 2021) but this did not have big effect.
          My wife urges me to not mention any treatments in Mexico……it pisses
          American Doctors off……I never question my wife….???
          I live on an Island in Washington State but AF treatment even in Seattle has not been available.

          • I moved to Cincinnati for the summer to have my revision surgery with Dr Noyes and the physical therapy with his in -house pt team led by Tim. It has been a HUGE amount of work but I have no regrets. Just got back from a nice bike ride and have taken up yoga (modified so I don’t have to kneel :)). Before I had the revision surgery, my knee was completely bound down, my leg was stuck in one position, and I had very limited mobility. I really thought my life was over as I knew it! I truly believe that traveling to the right specialist and being prepared for a three to four month dedicated recovery is the way out of this. It won’t be easy but it is worth it. Ps I just weaned off lyrica which I was taking for the neuropathy; the pain kind of just resolved on it’s own; I think I dodged a bullet on that one! Best of luck to you and say hello to Donna and Tim!

            • Sorry, one more thought. Against all advice, I actually stopped PT for four weeks before my revision surgery. It wasn’t helping at all, and I felt it was just irritating the situation. My leg was stuck, and pushing through it just seemed counter- productive. But most importantly for me, I just needed a mental health break before the second surgery. I knew it was going to take every ounce of resolve to recover from yet another major surgery, plus the non- stop PT protocol afterwards. For me, it was the right call. I was in the right frame of mind going into the surgery, and worked on Tim’s PT protocol religiously and with a positive attitude. I think for me, a little break beforehand was the right call…( speaking of spouses, my husband disagreed with me on that one, but I am glad I ignored him!) Just some food for thought…..:)

              • Ps, I just returned my Flexinator this week ( my revision surgery was in July); I no longer need it! I’m at 120-130 consistently without any pain in the bend. Still general pain after a hard work out, but I’ll take that. I never thought this day would come. So stick with it; there IS light at the end of the tunnel….

                • Here is a most informative Arthrofibrosis research article.

                  “Pathological mechanisms and therapeutic outlooks for arthrofibrosis”

                  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6433953/

                  1. Fighting inflammation is a primary element of Arthrofibrosis Treatment.
                  2. Two types of Arthrofibrosis; active arthrofibrosis and residual arthrofibrosis.
                  3. Women have a naturally superior immunity response but once the immunity response becomes more unregulated become more prone
                  to OA, TKR, etc. Is Arthrofibrosis different in men than women?
                  4. Summary of Treatments: very extensive.

                  • Thank you, very helpful! A few thoughts:

                    -Consistent with their observations on inflammation, Prednisone does indeed do wonders for me (but I stopped it due to concerns over long term use). My surgeon prescribed fairly high doses of Prednisone immediately after the revision surgery, however, and he also had me on weekly injections of anakinra ( Kineret), which is an interleukin-1 blocker, for a few months after surgery. That now makes complete sense to me!

                    – At my surgeon’s suggestion, I am starting to work with a rheumatologist to address ongoing and underlying inflammation concerns ( which was also discussed in the paper). The rheumatology community does not currently seem to be particularly well educated on arthrofibrosis. I plan on forwarding this article to her, and suggest others do the same if they are working with specialists who are unfamiliar. It dawns on me that we need to advocate for better understanding of this condition within the medical community ( particularly if, as the paper posits, arthrofibrosis is more common than the existing studies suggest).

                    -One thing that caught my eye after reading the paper- I had a collarbone break around 5 years ago that required a surgical plate. Although I followed the PT religiously, I nonetheless developed frozen shoulder. I had thought it was just “ bad luck” at the time. But there MUST be a connection here. Note I don’t scar particularly easily or develop thick scars on my skin, which is something medical professionals always ask.. This got me wondering:
                    -how much more research is needed to identify patients BEFORE surgery who are at risk for a fibrotic response?
                    – could a predisposition for developing arthrofibrosis in the JOINTS Indicate a higher risk for developing fibrotic responses ELSEWHERE in the body, such as the lungs?
                    These researchers appear to be trying to move the needle on these questions…
                    Thx

  23. 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!

  24. 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
      neuropathy.

    • 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 %

  25. 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?

  26. 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…

  27. 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!

  28. 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)

  29. 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!

  30. 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.

  31. 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.

  32. 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.

  33. 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.

  34. 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.

  35. 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

  36. 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.

  37. 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.

  38. 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.

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

  40. 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

  41. 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-

  42. 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.

  43. 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.

  44. I had a knee replacement in January of this year 2020. I went under and have had 5 MUA’s and Arthroscopic on my knee to get rid of the Scar tissue. To this day, I still cannot bend or straighten my knee correctly. I can’t stand for very long. No can I sit for very long. Sleeping is so difficult. I have been on pain pills since January. Soon I won’t be able to get them at the end of this year. It has been a long road. I don’t know what to do. I don’t think the Doctor knows what to do. I wish I could find some help.

    • Wendy I really feel for you–I know from experience that lack of good sleep just magnifies all the negatives. I have had 34 joint surgeries, 14 each knee and 2 and 4 shoulder. I am 54, when I was 18 found out I had a massive case of Osteochondritis Dissecans (similar to Avascular Necrosis) where the bone defect was 10 times the size of a normal OCD defect. I had several major surgeries between 18-33 to try and save the bone but due to large size of the defect all ultimately failed. At 33 I had a TKR in both 6 months apart–less than a year later the Arthrofibrosis hit me fast and hard. I had physical mobility but was and still is quite painful. I had 6 surgeries after the TKR on each to clean out the “clunk” but it turned into groundhog day, over and over. I was taking 1 step forward then 2 back so it was decided to continue that path was foolish.

      I wanted to give you my background because this procedure may be an option for you: I met a Doctor who thought out of the box and his thinking was treating the AF cells that wildly reproduce like cancer cells. So I had 1 final arthroscopy to clean out the fibrotic material then 18 hours later that fresh bed was hit with radiation to try and kill off those cells–it made a lot of sense unfortunately I think because I had had so many surgeries and so much trauma that my body was already in hyperdrive however I would still recommend at least having that conversation because it may be an option for you.

      I hope you find something that helps.

      Sincerely,

      Jeffrey

      • Jeffrey,
        My 3rd surgeon also said the radiation was better than using tourniquets. Also, the aggressive physical therapy contributes to my AF. They try so hard to get those numbers, they are too aggressive and are creating the bleeding inside ….this more scar tissue

  45. 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.

  46. 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.

  47. 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!

  48. 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

  49. 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!

  50. 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

  51. 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.

  52. In February 2020 I had a full one replacement. i live in Canada.
    By now, November 2020, I have not had any significant improvement in pain, redness and some swelling of my knee, especially after physiotherapy treatments with stretching and bending, which have again and again just aggravated my knee, I have last month scoured the internet and have found some significant new research of Arthrofibrosis in Germany.
    I have contacted Dr. med. Philip Traut, who has done a lot of research over the last 6 years in Arthrofibrosis, coming from his experience with patients who have suffered from Arthrofibrosis after knee replacements.
    Facharzt für Orthopädie
    Facharzt für Physikalische Therapie und Rehabilitation Praxis für orthopädische Beratung und Begutachtung Agaplesion ev. Klinikum Schaumburg
    Klinik für Unfallchirurgie und Orthopädie
    32545 Bad Oeynhausen, Germany
    Mail: praxis@dr-traut.com ;Internet: http://www.dr-traut.com
    I talked to Dr. Traut for over an hour on the phone and he has sent me his latest research articles as well as other relevant material.
    It is interesting to see such new research and such a different treatment model for Arthrofibrosis, especially when there is no literature or research in Canada or the US yet.
    Also interesting is the fact, that this research comes from Heart- Fibrosis research and is also being looked at in the latest research of lung respirators and intubation for Covid patients. ( Cytokine storms etc.) The other fascinating aspect is the connection to the bio-chemical, triggered by the Mind-body connection.
    You will find several articles by Dr. Phillip Traut, especially his “Lexicon Contribution to the Orthopedic Surgery Professional Organization” ( BVOU) in Germany.
    I have translated several articles into english. It gives a pretty concise summary of his new model of treatment for Arthrofibrosis.
    Yy knee feels like it has an iron ring around it.
    Dr. Traut calls it a “Schraubstockknie” , a “ vice-grip knee”.
    That’s what my knee still feel like even now. If I had known then what I know now, my life would be quite different today.
    The new Model of Treatment does not try to break up the scar tissue with heavy exercises, but will let the knee heal first through gentle exercises, QiGong, warm water Epson salt baths, Ayurvedic treatments, Pulsating electric Magnetic Field Therapy etc. Less is More!!
    For me a full healing is probably no longer achievable, but if I can spare any other patient the pain and disability I have gone through the last 8 months, this research will be worth it.
    there is also a long research article about these new finding by 3 Australian and Chinese researchers:
    Pathological mechanisms and therapeutic outlooks for arthrofibrosis
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6433953/
    .So I really hope, that you will look further into this new research and be aware of the the implications of Arthrofibrosis and how it can affect about 10% of patients already in the early stages of recovery. With early detection it can be prevented.

    • My takeaway from the research is NOT to take ibuprofen. I have been on it since January.
      Thank you for the information!

    • Thanks Maria for your comment. I live in Germany working for the Air Force. I have an appointment with Dr. Traut on 2 Feb for arthrofibrosis in both knees. Left TKR was done in March 2018 with severe scar buildup. My Air Force surgeon did one MUA and after the scarring returned in weeks, she recommended going to a joint center of excellence. I saw 4 German docs and all confirmed it was arthrofibrosis. I saw the one for about 4 months but was on heavy doses of OxyContin. The rationale is that the scarring is our bodies natural reaction fighting pain therefore you have to minimize/eliminate pain; thus the narcotics. The other three ortho surgeons wouldn’t touch my knee. They all said the chances were higher that after a revision it would be worse. I stumbled across Dr. Finn at Weiss Memorial Hospital in Chicago. After three flights from Germany to Chicago last year, I finally got a Finn Hinge knee replacement. Up until that time, my ROM was 45 degrees at best and I lived with constant pain. After the hinged knee was put in on 19 Sept, I went to 75 degrees when I was released. I had two additional MUAs over the next 2 months. I’m n 29 Oct last year, Dr Finn also replaced my right knee with a regular prosthetic. I had skin infection complication following the surgery which prevented any therapy until I flew back home to Germany in November last year. All in all, I was there for 2.5 months and in the hospital 4 times. Today, I have between 110-120 degrees ROM the n both knees. However, my knees are as big as cantaloupes. Both are stiff and there are nights that are tough to sleep from the pain. But, in saying that, I can walk endlessly and for the first time in years, I can pedal the exercise bike with full rotation for 30 minutes. I’m convinced the hinged knee freed up my left knee. Now, I’m hoping Dr. Traut can help me manage the scar tissue that is enveloping my knees and make life better. I’m not not 3 and 4 months out of surgery and I’m concerned the scarring will start reversing the ROM I’ve gained. I’ll let you know how my appointment goes and any advise provided. Stay healthy!

  53. 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.

  54. I’ve had rsd/crps since 2000. In August I fell depressing tibia under knee. And during fall my foot and ankle hit concrete with foot landing upside down. A few days later I got in to orthopedic, foot,and ankle dr. Knee was in brace.to await surgery. Foot and ankle in excruciating pain rsd. I know. Ball of foot,heel,top,of foot and ankle. Pain and swollen. Now it’s time today to begin 25% pressure on knee injury with walker. Throughout this whole ordeal I have been fighting to keep up with knee therapy as I fight swelling and redness after elevating with ice and elevating each nigh at sleep 1ft. Above heart. In a.m. foot almost looks normal. As soon as I lower it it begins to swell,turn red the longer the foot is down in sitting position. Today after first time on walker I was told to keep foot flat on floor as much as possible and do exercises for knee recovery. That was this a.m. its 3:34 I sat down foot too swollen ankle too. Elevated with ice. And see tiny red dots all up to mid thigh. Is there any hope for recovery. I have no pain but am on hydrocodone for knee. Do I have pitting edema.

  55. 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.

  56. 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.

  57. I have had moderately severe arthrofibrosis in my left knee for a couple of years following 40 years of osteoarthritis in that knee. After I injured the knee in 1977 it locked up (typical for a torn meniscus) and I could not bend it or fully extend it at all for about 6 weeks. Without health insurance at that time all I could afford was Physical Therapy which did restore full function of the knee. However, the torn meniscus was not surgically repaired and I believe that the tear caused full thickness degeneration of the articular cartilage which was confirmed when I had a medial menisectomy in 1980 when I re-injured it water skiiing (kneeling on a so-called “boogey board”). I have had osteoarthritis ever since that surgery.

    Anyway, with that history a couple of years ago the arthrofibrosis began and after only a couple of months the range of motion was very limited (flexion and extension were both very limited by the fibrotic “thickening” in the knee joint capsule). I went to PT and after a few months of hard work the ROM had improved to almost normal (full extension but flexion limited to 90 degrees) but the knee was very uncomfortable. I was very worried about it. Then, my 16 year old nephew had a complicated fracture that required surgery and his surgeon insisted that he use a “bone mending” device. Huh? I was mystified and wondered, what the heck is a “bone mending” device and can it mend cartilage? Could it help with my problem? So I researched it a lot and tried a particular PEMF device (Pulse Electro Magnetic Frequency device) that was a waste of $300 but I did return it for a full refund. My knee continued to deteriorate so I did more research and tried a different PEMF device for a bit over $500 (I think it is now something like $625). The first night I used it the fibrosis diminished significantly. As it turns out, for some people PEMF does significantly reduce inflammation. With continued use and physical therapy my knee functions at about 85% in my own estimation and that might turn out to be my new baseline. I have continued with the PEMF every night all night. It seems like I might have to continue long term as I skipped one night and the fibrotic “thickening” began to return immediately with some immediate (within 12 hours) loss of ROM.

    That’s the short version. I’m not marketing anything so if anyone is interested then send me a reply and I can link you to some resources for PEMF but there are many charlatans out there. BTW, thus far the pemf does not seem to have helped the root cause of my osteoarthritis at all, which is to say, it does not seem to have regenerated any articular cartilage as some people (and some animal studies) claim it will. Who knows, maybe over the years it will but at this time all I can do is claim that it seems to have significantly reduced inflammation and therefore it has improved ROM and alleviated much of the discomfort. The pinpoint pain where the meniscus is located is still there like it has been for forty years. But the fibrosis inflammation was crippling so if this is the best I can do I will take it and be grateful.

    Best wishes to all,

    Robert

    • Hi-

      Would a PEFM device help after a TKR? Manipulation didn’t work.
      How does it work and where did you order it?

      Thank You-
      Jennifer

      • Hello Jennifer. Sorry for the delay, I kept checking for replies but it seems like everyone is so interested in surgical interventions that my information on PEMF fell on mostly dead ears. The ground breaking work on PEMF has been done by an electrical engineer named Dr. Robert Dennis. He is open to correspondence and he has some presentations on YouTube.

        To answer your question, yes, it can be used after TKR.

        Here is a link to a PEMF discussion group started by Dr. Dennis: https://forum.fluxhealth.co/t/clean-break-hip-and-clavicle-collarbone-both-with-internal-fixation-treating-with-pemf/1109

        From that page you can link out to shop for devices. I recommend the M1 device as it is very portable and effective. I also stated using the more expensive C4 device once I ascertained that the PEMF treatment works for me. The C4 device has 4 coils (the M1 has 2) but it is bulkier so I use it an night with four coils around my knee.

        One more thing—do not be fooled by all the high powered commercial PEMF devices. I believe Dr. Dennis is correct that it is not a matter of power but rather the wave form. Most high power devices use sinus rhythms that do not work in my experience.

        Best of luck!

        Robert

  58. 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.

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

    Anyone try it?

  60. 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.

  61. 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.

  62. 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.

  63. 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.

  64. 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.

  65. In Aug 2018 I had ACLR which resulted in Sepis of right leg (bone, joint and blood infections). 2mths later diagnosed with Arthrofibrosis. Had 2 surgeries to remove scar tisse as well as manipulation under anesthesia with worse results.On 4th surgery surgeon was determined to scrape ALL scar tissue as it came back worse with considerable nerve & tissue damage. That final surgery resulted in a life long progressive chronic condition called CRPS. I have never regained use of right leg due to complications. Im non weight baring as deep bone & nerve pain prevents me from using it. I’ve tried lots of various techniques to relieve chronic pain and mobility.
    I’ve tried to research all my complications together. Im contacting you for information or possibly information on long term treatment. I have severe atrophy & contractures in leg so ROM is nil. Its now been just over 2 yrs dealing with complications. Quality of life has been taken away.
    Thanks for your help
    Connie

    • I feel the same. No quality of life. I can’t walk far and have to use an aid. I am unable to drive and in pain from sitting and standing too long. It’s debilitating.

  66. I have had a total knee replacement in February 2020 and now, after 7 months I am still in much pain and whenever I do exercises “through the pain level” it gets worse. I found a lot of answers in an Austrian and German forum about Arthrofibrose. http://www.arthroseforumaustria.at
    Dr. Phillip Traut, Bad Oeynhausen, Germany, has a lot of advice, but unfortunately it is all in German. They are way advanced in their research: their main advice is: very gentle exercise; do NOT aggravate the built-up scar tissue. A lot of the problem comes from the chemical imbalances and signals the body gives to the trauma area of the operation, namely that the body thinks, it is traumatized again by the heavy exercises and builds up renewed scar tissue. A vicious cycle.
    The motto: “work through the pain” is totally wrong. it will constantly aggravate the pain again and will not allow the scars tissue to heal.
    This is the only article in english that I found: https://www.disabled-world.com/health/orthopedics/arthrofibrosis.php

  67. I have read most of theses comments and can totally empathize with everyone. I was wondering where’s the list of surgeons who specialize in this surgery. I see the Steadman Clinic but who else? From my understanding you have to have a poor range of motion for them to consider surgery. If it’s just the pain and inability to walk pain free, you are referred to pain management. Does this sound right?

    Pat

    • Hi Pat. I just had surgery with Dr. Hackett at the Steadman clinic. I have arthrofibrosis from an ACL reconstruction and then diagnostic knee scope 11 months later by another surgeon. Original ACL was March 2017. I had Full extension, even equal hyperextention to the other leg and nearly full flexion going into this surgery and yet I was MISERABLE from all the scar tissue, particularly in the anterior interval /fat pad and in the suprapatellar pouch. My ACL graft was also shot and not in the proper position so he took care of the scar tissue (he said there was a lot!) and reconstructed the ACL with a donor graft. I can not tell you how happy i have been with Dr. Hackett and his team and my experience here so far. I’m at risk for it returning, of course, but they have an extensive protocol to prevent that. According to a local PT here, Dr. Hackett is most like Dr. Steadman was in his approach to arthrofibrosis. POD1 redo-ACL and scar tissue surgery and I had over 100 degrees flexion, full extension and a quad that fires with no extension lag. My swelling peaked about 48 hours post op and I’m continuing to improve. POD3 today. Just wanted to say you definitely don’t need to have bad ROM for arthrofibrosis to be considered for surgical treatment. Dr. Singleton in Ft Worth Texas had also recommended surgery for me for the arthrofibrosis (not the ACL recon though). Best wishes to you.

      • Hi Sarah, if I could ask what made you choose Dr. Hackett over Dr. Singleton? I’m planning on seeing Dr. Singleton for my knee, it’s much like yours in that there’s pretty much full rom, but my knee always feels dense, heavy, and like it’s full of scarring – I know something’s wrong. I’m just curious because I heard Singleton is known for well known for treating arthrofibrosis. Just want to see the best surgeon I can. Thanks

        -Derek

  68. 8-30-20
    So folks. How come I don’t see any possitive remedies for this issue?
    Can anyone really fix this issue?
    Let’s here from you?
    Call me if you have gotten over this horrible issue
    732.666.1723

    • I had bilateral TKR in 2005. I have had four MUA and scar removal surgeries on one of my knees (the other did fine) I went through therapy each time, pretty aggressive usually, to no avail. I do not have chronic pain but I am very active and tend to fall a lot, tripping over anything and everything if I am not extremely careful. I have yet to hear anyone offer a success story of fixing this terrible condition. I realize this ranks way below finding a cure for cancer but it sure affects your lifestyle. I would love to hear from anyone who has beat this.

      • Yea me too. I sent all of my surgery records to the Hospital for Special Surgery, Complex Joint Reconstruction Center in NYC, to see if anyone there can help me.

        They have a group of doctors that get together for special cases like ours (for a $500.00 non refundable fee)

        My case was brought up last Monday, I’m waiting for an answer. I’ll keep everyone informed

    • Arthroscopic surgery and removing all of the fibrosis helped tremendously. Rehab was tough though, lost a lot of muscle and never played again(rugby) but at least I don’t have knee locks or kneecap dislocations anymore at random times. I’m sorry but I do not know any doctors in that area. It was a simple enough surgery, the biggest issue was the diagnostic, as I spent 8 years with it before they found it.I hope you get well.

  69. 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.

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

  71. Hi all.

    I had ACLr surgery at the end of April 2020, and had an MUA in early June. Due to the bucket handle meniscus tear, I was unable to achieve much flexion prior to surgery. Post-op, I was at about 50-60° and remained stagnant. With the MUA, I reached 90° until three days later and I dropped all the way down to 20° with severe, debilitating pain and swelling that no amount of icing, elevating, or pain meds could help with.

    PT was extremely aggressive with me, and I’m 100% convinced that it exacerbated my arthrofibrosis. I would spend the entire hour of each session literally sobbing from the pain, to the point of being unable to control my breathing (which is no easy feat, because my pain tolerance is extremely high). I’m not sure when the CRPS happened — if it was a slowly building thing or if it came after my MUA — but the pain is constant, small touches hurt, going too hard with PT leaves me in waves of pain that take an entire week to settle down, and icing makes it swell more (because of the CRPS).

    I am now 10 weeks post-op from surgery, and my OS has taken me off of PT, so I am now doing everything from home, and will soon be seeing a pain specialist for the CRPS.

    I can actively bend my knee to mayyybe 30-40° at most right now and extension hovers around 0°, with small improvements each week. Because I’ve gone so long without flexion over 100°, I’ve had a lot of hamstring tightness and pain when I DO bend, and the feeling sticks around when it’s straight.

    For those of you who have had a rough time, I’d like to mention a few things which have helped me:
    – ordering Chang Shan from hawaiipharm.com (I take a full dropper three times a day)

    – alternating between baths with CBD (gotta have at least 200mg to help — I bought mine from kushqueen.com) and epsom salt

    – before bending, massage behind the knee and alongside the outer part of the knee where your hamstrings are so that you loosen them up

    – I have two towels that I use to help with bending. I fold one towel in half so that it forms a narrow rectangle, and roll it up so that it makes more of a cylindrical pillow. Let your knee rest on it for as long as you comfortably can and take breaks to stretch for extension. (If even this is uncomfortable, try it with a pillow under your foot to decrease the flexion angle and get the knee used to the bend.) I’ve found this to help with unblocking some initial stiffness, and after a while, you might feel more smoothness when you try to actively/passively bend. I sometimes sleep like this and when I wake up to use the bathroom, I stretch it out and then go back to sleep with the knee bent on the towel. After you get used to one towel roll, wrap another towel around it to create more width, and keep going! I’ve been able to achieve more from this than anything else (stationary bike is a hard no). Once my knee can bend to at least 50-60° again, I plan on prone hangs off a wedge pillow for support.

    – as for extension difficulties, this is out of my ballpark, since it’s the one thing I’ve been able to retain, but my advice is to gently stretch as frequently as you can.

    – if you have hip or lower back issues from not being able to walk properly for a long period of time, it helps to either stand (braced against a counter for support) or lay down on your good side, and do side leg raises. Do the raises 3-5 times a day in sets of ten, and if it’s tolerable, do side leg raises where you rotate the leg clockwise and counterclockwise.

    I am doing my best to stay positive in spite of each diagnosis (I thought the arthrofibrosis was rough, but then the CRPS bowled me over completely), and it’s hard because I’m only in my late 20s and I’m usually very active. I am planning on 2-3x a week visits for some water therapy and crossing my fingers that this will help, too.

    • JJ,
      I had surgery for arthrofibrosis of my right knee three weeks ago. I am 63 and developed arthrofibrosis after a knee replacement 14 months ago. I can say that the scar tissue goes nowhere. SO, I had the lysis and MUA to get rid of the scar tissue. I was at 7 extension and 91 flexion before surgery. Now at 1 and 122 flexion. But, it is still work and I agree that PT is really a thing that must be managed carefully. I had my arthrofibrosis treatment at The Steadman Clinic in Vail by Dr. Goden. My PT is 4 weeks of Range of Motion work only. SO, no strengthening. I’m still on a CPM machine 6 hrs a day and ice machine (NICE) for several hours a day and all night long.

      PT is limited and it is really a fine line to cross. Steadman Clinic gives very specific PT protocol and it must be followed. I’d call them if you can to see if you can get in there. I know insurance issues can prevent this. I had to drive 10 hours to Vail, CO. This is one of only a handful of doctors who know how to deal with arthrofibrosis. MUA only will not get rid of it and may make it worse.

      Please let me know if you have questions or anything.
      You can email me

      • Hi JJ,
        I wrote to the clinic two years ago, in Greenville, NC and they said they did not see patients with AF caused by TKR. Since they were the only doctors that have treated AF at the time. It was quite upsetting. I have been in a in for years. Thanks for posting this. I will contact them again.

        • Specialist are listed under Practitioners on the home page.
          I didn’t notice this at first either.
          Good Luck!

  72. 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?

  73. 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?

  74. 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.

  75. 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!

  76. 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.

  77. 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:(

  78. 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.

  79. 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

  80. I am losing all hope. The Arthrofibrosis is back. I would like to know if anyone in this group has had success with arthrofibrosis? If so, what has worked? I am feeling desperate and hopeless, but mainly just tired of the pain. I had a TKR in 5/2018. MUA 8/2018. 4/2019 Conversion Knee Arthroplasty with a hinge. 12/2019 Replacement of the knee component of the Conversion prosthesis. I have had my knee aspirated more times than I can begin to remember (7 times from 1/2019). I have followed PT to the letter. I have taken Losartan to see if it would help(it did not). My ROM for extension has drastically improved from the last surgery. My flexion has gone from 115-65 in 6 weeks. My surgeon and rheumatologist decided to attack the arthrofibrosis as an auto-immune disease. I was supposed to start Methotrexate and Colchicine, but with the current state of the world, the rheumatologist has suggested I wait on immune suppressants. I am beginning to feel the best solution might be to remove the leg from the knee down. Honestly, I am looking for hope.

    • Hi! My story is a few comments down but I’ve had arthrofibrosis for 2 years. I started methotrexate 8 weeks ago but have yet to have surgery (won’t until this pandemic is over). Nice to hear someone else is on this course. I’ll certainly share my results.

    • I had TKR May 2019 and developed arthrofibrosis after about the sixth week due to a lupus flare.

      Since I live in rural WY the surgeon was inot knowledgeable about this. I went to Denver for consult.

      I am at 100 flexion and not full extension. So my gait is off and hip pain, knee and ankle pain are bad.

      I may go to Mayo Clinic. I believe you can check out the x10therapy.com website for info on a machine that is getting good reviews. Maybe you can get your doctor to check it out.

      • I live in Florida and I have a phone consultation this morning about th x10. Fingers crossed this is something that will work.

      • I have had AF for 6 years now. I have had the x10, set up in my home for over 6 months, it helps with flexion, – and +, but not AF. I have also had the SAM Unit ( Ultra Sound) Ortho Pods ( MIcrowave unit) opioids for 3 years, Custom fitted Load bearing braces.
        I have had 8 procedures, serveral MUI’s , Blocks, and short of getting a Spinal Stimulator, which is useless at this point, my Flex is -60/-10.
        I have been to specialists at Johns Hopkins, Sanai Hospital both is Baltimore ( Dr Delanois is the best< and MUSC in Charleston (don”t waste your time)
        CBD oil and brace work so I can walk to the mail box, but other than that, they did recommend amputation, but you still have pain with that. So keeping comfortable is key. It does not go away, therapy makes it worse because every time they try to get their numbers, they create bleeding which makes more scar tissue. My nerves have been damaged by therapy and surgeries. There is no cure. They told me to stay comfortable…”get the gummies, they are best” was my latest recommendation from a specialist and “watch the birds in your yard and enjoy the rest” from my pain mgmt doctor. really??? I am too young for this life..

    • I’m in the same boat as you but at least your. Doc is trying something mine is not. I to have been wanting amputation above knee my quality of life sucks leg is stuck at 68 flexcion and 5 on extension if I don’t keep my straight leg brace on my fibrosis gets so bad I can’t walk and I have to use wheelchair they also won’t give pain meds so I drink my self to sleep I guess it’s ok to be an alcoholic. I’m sorry your in this same sinking boat I hope you get better care then I

      Cheryl

    • You and I pretty much have the same story, except for when we had our surgery. A few weeks ago, I felt like amputation might be the best option too, because I was at wit’s end just like you. I regrouped and realize that keeping the leg is most important. I have been using Icy Hot menthol patches that normally are used for your back. I use them on my knee, and they give me a lot of relief. I also soak my leg in Dr. Teal’s Pink Himalayan salt or Epsom salt. I am sending positive energy your way. If I learn of any other things we can do, I will share that with you when I can. Until then, I wish you hope, patience, and strength to deal with the pain.

    • Hello, I am so sorry to hear about your horrible experiences. I have had arthrofibrosis for over 3 years now. I may have missed this in your earlier comments, but have you gotten an MRI done recently?

  81. 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.

  82. I had a total knee replacement 27th Feb 2018
    After physio and realising my knee kept swelling and stiffening up my surgery said I might have arthrofibrosis, I’ve had no examinations or tests to prove or disprove this diagnosis
    I’ve had two MUA’s and a steroid over the first 18 months, my surgeon then suggested replacing the 10mm liner with an 8mm liner, I have become sceptical as to he’s suggestions
    Am I right to doubt him, or should I let him keep trying things?

    • I’m in a similar predicament. My surgery was in 2015 and had 2 MUA’s still doing poorly. Recently saw a surgeon that suggested doing a low dose of radiation shortly before surgery to keep the scar tissue from forming in the area. I’ve researched that idea and it’s been successful for those that have had it done. I haven’t scheduled anything yet as he wants me too do a blood test and bone scan to make sure I don’t have an infection or any loose parts. So to answer your question, talk to your surgeon about this procedure and if you’re ever in doubt get a second opinion. Hope everything works out for you!

      • I too have read slot and a Dr Finn in Chicago does the radiation low dose and read lots of good things have happened good luck. Please let us know how things turn out for you

        Cheryl

      • This is absolutely correct!!! I was told the same thing should I decide to have a fourth revision, which I will not. But this will stop the bleeding the tourniquet causes. Also, PT techs need to stop pushing the knee to get better numbers, they are creating the inflammation, but they are not taught to do this. Inform your doctor to make sure they do not over end the knee. They are not breaking the tissue, but creating more.

  83. 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!

  84. 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.

  85. 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

  86. 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?

  87. 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.

  88. 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……

  89. 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.

  90. 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

  91. 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.

  92. 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!

  93. 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?

  94. Had a TKR 1/30/19. MUA 3/5/19. Revision 6/5/19 was supposed to be to replace prosthetic but found arthofibrosis. Cleaned out then. Very aggressive PT 3 times a week starting 5 days after surgery. Slept in flexion splint at night and extension splint at least 5-6 hours daily. Arthofibrosis has returned. Seeing specialist in Dallas for second opinion to replace prosthetic with hinged type mechanism to reduce/eliminate arthofibrosis. Constant pain in knee and hip. Need other knee done but may just live with that pain instead of another TKR.

    • Hi Drenda. I have a similar story. RTKR 2018 / MUA 11/18 / Revision 2019 to replace the poly component with a slimmer piece (this improved extension) / Arthroscopy to remove adhesions 2019. All of this and flexion max is 86. I had 110 pre op. I have not heard of an alternative device that could limit AR. If you are still monitoring or posting on this site please let me know what you have found.

      • Robin, after seeing specialist in Dallas, he ordered a three phase bone scan. Went over it with him last week. He found the prosthesis is loose on both sides in several places. He is replacing the prosthesis. He isn’t convinced there ever was arthofibrosis. Said he would be able to tell me more after surgery. He is booked so far in advance that I am having to wait four weeks for the surgery (2/6). Can update you after surgery.

        • I would like be to know the outcome of your 2/6/20 procedure! I had TKR in 2012 with tightness of scarring and pain. In 2016 had a Total Knee Revision due to knee becoming unstable because of problem with the replacement becoming loose. After that surgery, developed severe Arthrofibrosis and my flexion is at 11 degree and bend is less than 90 degrees, and bending continues to be reduced. Knee is extremely painful, my leg has now become a serious disability.
          Looking for some options out there to give me a knee with improved mobility.
          THANKS!

  95. Post TKA one year. This is my second tka on the same knee in 11 months. Very aggressive arthrofibrosis formed very quickly. Did manipulation twice, months if therapy, surgeon says nothing else he can do. Rom about 70 and a great deal of pain.
    Very frustrated. Surgeon attitude is I’ll have to live with it..
    Ray

  96. 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.

  97. 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!!

  98. 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.

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

  100. i had a total knee d ios,replacement at only 43 years old.I have arthrofibrosis and complex regional pain syndrome. I had a closed manipulation 6 months post op and my surgeon didn’t ever see me again.my pain is 24/7! i have 90 degrees rom. i cant do stairs its awful on my lower back and hips.i am barely able walk having crps and arthrofibrosis any ideas to help me?

  101. Hi. First of all I am sorry we are all suffering!

    I had a TKR September 29, 2019. I had a MUA on November 4, 2019. One week and still using a CPM approximately 8 hours a day. I can feel my knee stiffening up again. Did anyone have a very aggressive PT routine seeing a therapist 5x a week for two weeks after a MUA?

    Has anyone had any success with cryotherapy?
    I live near Cleveland, Ohio.
    Phyllis

    • Hi – I had very aggressive PT in Chicago – Dr. Finn — no success, and even though I asked him (Finn) to do the MUA sooner, he refused. Later he performed a MUA, and was so determined to get my knee to bend that tore a muscle deep within the knee area. I kept bleeding when I exercised so I had to stop PT for bit….VERY DISAPPOINTING a supposed 2 week stay lasted 2.5 months away from home, which I would have been fine with if all was successful…but not. I have pain 24/7…warm to touch, hugely swollen. Cannot walk down stairs properly no running at all, disabled for life.

      I tried so many different pain reduction therapies, including cryotherapy. It did not help me at all. My main concern is when I m older…what will be??? Take care.

  102. 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?

  103. 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.

  104. 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

  105. Gluten-Free diet can help minimize scar tissues.

    I had TKR back in December 2016, followed by severe arthrofibrosis condition which lasted through one MUA and three other surgeries to remove extensive scar tissues, only for the tissues to come back just weeks following all surgeries. I now feel the best I felt for years mainly due to the article provided by Mary in July :
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6433953/

    It is a long article, summary is you need to control and reduce inflammation which triggers growth of the scar tissues. I started gluten-free diet, low sugar diet and to my surprise the scar tissues are not as thick and painful anymore. for the first time in almost three years I can move without pain or with very little pain. I strongly recommend for everyone who is suffering from this debilitating arthrofibrosis condition, to try controlling body inflammation though diet and focusing in anti-inflammation foods (banana, peppers, probiotics, Omega 3-6, generally use gluten-free products which can now be found in most grocery stores) replacing bread, bagels with gluten-free alternative can make big difference to minimize scar tissues, as well as for your general health.

    I wanted to share my experience, hoping that I can help others going through the pain and anguish I have gone through for 3 years.

    • Thanks for posting this. I had a TKR Feb 27 this year. I required a MUA on April 10. Currently, I only have about 90 degrees flexion, but thank goodness, I have 0 extension. I don’t walk with a limp, but I have issues with other things. I now will have arthroscopic lysis of adhesions on Oct 28. Keloids run in my family and I was looking for any pointers. I’m going to try this diet, maybe even starting pre-op.

      • Hi Shayla,
        Just came across your post from October saying you were about to have arthrolysis surgery and wondered if that’s been done and what the success was. Hopefully you come back to this site and find this reply. I’m considering asking for it but thinking it will come back no matter the effort put into rehab.
        Bob Munson

  106. Muscles all over your body need love and attention to improve full body function and motion. Our beautiful Myofascial Tools case holds 4 of our sleek myofascial release instruments that are designed to treat fascia dysfunction.

  107. My husband had tkr in 2007 and they redid it in 2008 because of the pain & stiffness. He had several MUAs but still only has 70% and lots of pain.Finally diagnosed with arthrofibrosis. He recently had a bad reaction to Cipro which tore his rotator cuff, messed up tendons, etc. He can’t lift his arms. They don’t know how to treat this and I’m beginning to wonder if he could have arthrofibrosis set in his shoulders. He is in extreme pain. Just wondering if you’re a candidate for it the first time if it would appear in the shoulder.

    • Sherri, arthrofibrosis in the shoulder is “frozen shoulder.” I had it following rotator cuff surgery even though I did all the pt at home and at the clinic that was ordered. All the research I found pretty much stated it could last 2 years. I couldn’t lift my arm all that time but eventually my shoulder returned to normal without doing any special therapy or surgery. I now have a frozen knee following a replacement even though I followed all instructions for home exercises and clinic visits

  108. I’m researching this for my dad. He had a knee replacement 2.5 years ago, followed all orders and PT and was in severe pain with swelling constantly (also did manipulation). Another surgeon talked him into another replacement 2 months ago and was hoping for better results. Lots of scar tissue removed during surgery, but he’s no better now than before (did another manipulation 3 weeks ago). He’s gone from an active, healthy, busy 74 yr old, to a depressed, near handicapped man. He has a super high pain tolerance in general, but he is miserable now. He’s in Chattanooga and I’m in Atlanta. Are there any specialists in the metro Atlanta area to recommend?

  109. I had RTKR back in August of 2017 and I haven’t been the same since then. I did my PT and no matter what we couldn’t push past 75 so thats when we did my first MUA and my OS felt very positive because he got my bend to at least 90 so I was hopeful but I didn’t keep the ROM. I went with some more PT for another couple of weeks and then he did another MUA. Im now about a year into this new knee and Im miserable. Both of these MUA’s did nothing so I was directed to a pain management clinic and they wanted to try a genicular nerve block on the knee so I could push through and guess what, it didn’t work either. I went back to my OS in March and we said I wasn’t at the 2 year mark yet so just give it more time. Well i was taken to the ER back in May because my other leg was in excruciating pain and was told I have a bakers cyst behind the left knee and to go see my OS. Im obviously putting more on my left leg to compensate for the right. He told me i have arthrofibrosis and theres not much he could do . I practically begged him to do one more surgery on my right knee to cut out the scar tissue and start the healing all over. He agreed and on June 26, 2019 he went in and found something that he wasn’t expecting. He said the tendon that he cut for my initial surgery was blocking my scar tissue from breaking up.He said he removed the tendon but I feel that Im not getting any better. The pain is excruciating and my left knee is killing me. Im so afraid of ending up in a wheel chair. Im in Michigan and if anyone knows of any specialist in arthrofibrosis, please let me know.

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  111. Hello group,
    My story is similar to many of yours and I am looking for an arthrofibrosis “specialist” in the Boston area (there should be many here, but no one “advertises” that specialty and good luck finding…)

    I am 52 and had TKR on March 5. Within a month it was clear that I had egregious arthrofibrosis and had MUA on May 20 which did help a bit. He said he removed more scar tissue than ever w other patients so I don’t know if that indicates how bad my reaction is? I have new scar tissue at the arthroscopic sites.

    I can’t break past a 75 degree bend (w constant work) and pain is constant. I won’t go into how awful this is – you all know!

    My surgeon who is renowned for this work (I went to him cause other PT patients where I go have the “best outcomes” from him) but he seems to have little interest in the small % of patients like me, who don’t have great outcomes. He just keeps saying that I have a “low threshold of pain” – as if 1. that matters and 2. that’s a reason to dismiss me.

    At first he was very confident that – no matter what – we would get to full ROM, but now he’s kind of throwing his hands up and saying that with another MUA we might get to 90 degrees and ‘that should be good’. Would that be good for him??? He initially said a revision might be the solution and now he’s even questioning that. Is that because the scar tissue cycle will just return after a revision?

    Do any of you have that experience – should that be a concern?

    I’m scouring pubmed and other sites to look at how scar tissue can be limited – no luck yet. I thought of seeing a rheumatologist, but no one is available for months and surgeon says that’s a waste of time. I have lost ability to work (concentrate) and my life is sh*t, as you all know. Any help pointing me to research (I will look at Nature.com) or more importantly – SPECIALISTS in the Boston area (or NY? I will travel!!!) would be greatly appreciated.

  112. I had. 4 surgeries on knee 1 replacement. Broke femur in manipulation..set femur surger 3 partial replacement. Then. A 2nd tkr only can bend 70+ degrees and losing bend…

  113. Hello,

    I am a physical therapist and I have seen several cases of arthrofibrotic knees after TKR. Everything you all have described in these forum posts is the classic clinical picture of arthrofibrosis. I would just like to offer a suggestion of a direction to look/research for possible help. The one thing I have seen that helps arthrofibrotic knees in the post-op (still healing, not long-term down-the-road) period is something that falls under the generic term of instrument-assisted soft tissue mobilization (IASTM). There are many “brands” of it out there. The most well-known is Graston, but I will caution you up front to be wary of Graston as it is “can be” what I would call “aggressive”. I say “can be” because it depends on the practitioner delivering the treatment. Some of them tend towards aggressive treatment and you absolutely don’t want that with AF. However, some are most judicious in their approach and have an understanding of the nature of AF. I am attaching a link to an article of a case study of treatment of an AF knee after a patellar tendon rupture repair by one of these judicious Graston practitioners. The results are pretty impressive. Another “brand” of IASTM is AYSTM. AYSTM does not have a reputation as an aggressive treatment. There are other “brands” out there, but all of them utilize the same general premise of using a tool to break up scar tissue and adhesions. Practitioners of Graston & AYSTM must go to training seminars and pass a clinical proficiency test to become a certified practitioner. It is VERY expensive to get AYSTM certification. Graston is much less expensive. There are many more Graston practitioners out there. But again, beware, many of them cater to a younger athletic population and can tend to be aggressive, so if you find one, be sure to ask a lot of questions about their technique and about their experience with AF. You can google AYSTM and find their website and down at the bottom is a link for finding certified practitioners. You can do the same for Graston. The last “brand” I want to tell you about is more of what I would call a homemade brand. It is not well-known. It is a physical therapist out in CA who specializes in treating scar tissue and he calls his “brand” ASTR. He has a YouTube channel with hundreds of treatments of actual patients with various diagnoses and you can get an idea of what IASTM is and how it is done. His name is Joseph Jacobs and you can do a search for him on YouTube. One treatment I found impressive is called “5 months of frozen shoulder”. The ROM gained with one treatment is impressive to me. All this said, I am not a certified IASTM practitioner. I have a colleague treating a patient with an arthrofibrotic knee and was looking for the article I have attached below to send her when I discovered this blog and decided to just post this information in the hope that it may be helpful to some of you.
    Blessings,
    Lisa Milstead

  114. In July 2017, I fell “up” some stairs, jamming my forearm into the stair rise. I had excruciating pain in my right shoulder and it was difficult to lift my arm for a week. Then, lying on the bed, I could not lift my arm at all. MRI showed the rotator cuff completely torn off. Surgery seemed to go fine with a reattachment. But, my scapula was winging out severely. I was religious with my PT and the therapist even taped it down. It didn’t hold it down, popped right back up. The orthopedist said it was due to arthrofibrosis. In addition, my range of motion with my shoulder was low. So 5 months later I undergo surgery for breaking up the scar tissue. I was told that my shoulder would be yanked every which way to release the tension. In the process of this type procedure, which is very aggressive, the surgeon shredded my bicep! (My bicep was fine during the first surgery of my shoulder). So I awoke finding out that he had done a bicep tendonesis, cutting and tacking my bicep on the shoulder.
    My range of motion in my shoulder is better but behind my back is low, stuck. I have a quirky motion when I use my right hand to point and my teres major is extremely taunt. In certain positions when I sleep, my ring finger goes to sleep. AND, the scapula is worse! It will not flattened. I have tried deep tissue massage, cupping, exercises and chiropractic help. My bicep is tight and feels like plastic.
    My frustrations include all of the aching pain and the orthopedist saying there is no scapula surgery that has been found to correct the winging. Possibly, in the arthrofibrosis release surgery, did tendons get twisted out of position causing the scapula to wing, the teres to tighten and some nerve damage??? Has anyone else experienced this? Thanks for reading-

  115. Hi everyone,
    My story is the same as others, mine dates back to 2016 & “life changing” is an understatement. I am in Australia. I have read every study and any info available & asked many questions as well & now being on my third surgeon. I have a couple of questions that do not seem to be able to be answered even though I think they are simple. 1. Has anyone gone from minimal flexion to 100 degrees after treatment & what was that treatment.
    2. The “handful” of surgeons specialising in Arthrofibrosis, what are the specialising in? As all I find is studies & reports but no conclusion, this makes “me” a specialist in this field. I am so frustrated as everyone else is on here & my heart aches reading your stories even though I am in the same position. Wishing you all a good day.

    • You should go to the website nature.com and type in Arthrofibrosis. An extensive new study with several hundred references was published in January 2019 and released on the web in March 2019. I’ve had numerous surgeries and have progressively gotten worse. It appears that they’re doing studies on this condition but don’t really have a treatment or cure. The specialist out there aren’t really specialists as they want to do more surgeries, which often makes the problem worse. Good luck! I posted this information in May in an article I placed on this site. I feel like I could now be a specialist about this condition/disease.

      • Thanks Marilyn, I have read these studies as per your earlier recommendation. I agree with you regarding the surgeries, I ask lots of questions now & real answers are limited. Kieron

    • Hi Kieron. I know this is way out there since it is November 2019. But I had no where to go to answer my questions and consider myself an expert(my ortho actually said I know more than he does!!). I had a simple MCL sprain but think I developed scar tissue that froze it in about a 2-5 degree from extension in Dec. 2018. Had decent ROM until I tried PT for it and started losing ROM along with major pain. AN MRI confirmed nothing but healed MCL. I was diagnosed with ARthrofibrosis and frozen knee. My frozen knee was at 8-85 degrees. So I left it alone and rested iced and did not much and in June it started to thaw and I am now at 2-127+ ROM. I think that I still have scarring that hurts when I try to stretch into 0 degree extension or try to get back hyper-extension or even try to exercise. But too much of that puts me back in such pain and swelling I am limping again. I am afraid the scar is still active even though my phase of frozen is thawing…The pt and surgeon think I should be back to normal soon. I am not convinced. I am seeking out someone in January, new insurance. Although I have very good ROM,I still have lots of pain. I expect a surgeon would only work on me if I have less ROM, which is why I was dismissed from his practice. I need to find someone too. Have you had any luck?

  116. Hi everyone

    I had a tkr back in February 2017 and I was never right after it. I Never recovered properly and was left with a very stiff knee – my rom would have been 15 to 75 on a good day. My surgeon performed 2 MUA’s over the following months before agreeing that the knee needed to be redone. I had a revision surgery in February 2018 by a different surgeon and whilst it’s a little bit better it’s still a long way from right. My rom now is about 10 to 85 unassisted. Life is very hard, walking is extremely difficult and whilst I try to be positive most of the time there are days when it’s very depressing. I was only 52 having the first surgery so quite young really. My physio is great but within one day of treatment the whole thing stiffens up again. I’m living in Ireland and I’m wondering if anyone on here knows (and would recommend) a surgeon here who treats arthrofibrosis.

  117. Hi Everyone- I am new to this condition after a lateral bucket handle meniscus repair. I am in SO much pain and PT has made some progress but not very much. I have limited range of motion- less than 90 degrees. Im so swollen and spend my life in pain meds of the couch with ice. Just doing basic activities exhausts me and leaves me in so much pain. I am getting worried about work as I’ve been off since February. I can’t afford to continue this way. Just wondering how you manage to work through the pain and/or what did you do to continue your life. This has been such a difficult process and I’m really getting worried that I am going to stay this way. Thank you ahead of time!

    • Cameron Arthur says:

      June 1, 2017 at 1:10 am

      Tricia

      I couldn’t have said it better myself. After six surgeries in six months four of which have been huge open procedures, I’m left with huge amounts of pain due to the arthrofibrosis and a very minimal range of motion even after the most recent surgery included a major cutting into my quad muscles to gain A little extra movement. I believe my surgeon is a great surgeon or I wouldn’t have allowed him to do all of the surgeries but I know there are many people out there that question how hard we have worked and how much pain we are in and have no idea and no right to question that if they haven’t experienced this condition firsthand. I have had shoulder surgeries in the past and part of my lung removed which required cutting through all of my ribs etc. and I consider myself to have a pretty good pain tolerance so therefore when I say this is off the charts at times, I absolutely mean it and expect my surgeon and other professionals etc. to understand and believe me. When you feel like that doesn’t occur at times, that Just adds insult to injury and it’s so difficult to even take one day at a time with this condition when you are only 48 years old, great condition, have always stayed in shape and did everything and anything they asked for the surgeries including hundreds and hundreds of hours of physical therapy, done exercises on a regular basis, CPM machine etc. I spent two weeks out of the last month in the hospital and several weeks altogether but have never ever refused to do anything they’ve asked or required and quite the opposite have worked my butt off to get better and will continue to do so but it’s so difficult just to keep from being depressed etc. in addition to having this horrible disease and incredible pain. I can’t even get clear-cut answers out of my doctor as to what the future holds or next step is except I really believe I need a much better degree of pain management as it’s almost intolerable at times even with the medication they provide. I just don’t believe that the nurses or maybe even the surgeon themselves realize how painful arthrofibrosis and all of these things are since they say I’m the most difficult patient they’ve ever had and don’t deal with Arthur fibrosis very often. I even hear these things from physical therapy etc. from physical therapist that I’ve been doing the job 25 years that don’t even know what this disease is all about. Some of them have never even heard of that yet they believe that you should be able to push your knee past thos I even hear these things from physical therapy etc. from physical therapist that I’ve been doing the job 25 years that don’t even know what this disease is all about. Some of them have never even heard of that yet they believe that you should be able to do all of the exercises and improved range of motion greatly. It’s almost incredible to me to think that those people wouldn’t know anything about this horrible condition. I think they are so used to normal surgeries that they can’t wrap their brain around the fact that this could be so painful. I limp when I walk now, I compensate with my other knee that is starting to bother me, my lower back hurts as well, and I think it’s only going to get worse. It scares the crap out of me to think that my right knee may need work or that my back is going to be affected etc. You mentioned missing work and I have missed the last month and probably a few months out of the last six months. I’m very fortunate to have a job that I’m in the office the majority of the time so that I can do my work from home by email etc. but that won’t last forever obviously. I also feel like my surgeon is probably ready to ditch me at a certain time as I’ve already seen the attitude in the office surrounding him and the people that really make the decisions about writing pain medication etc. changing gradually. Even though I’ve spent tens of thousands of dollars on these surgeries and do everything that’s asked, it just feels as though I am becoming that problem patient that they could do without and that is the worst feeling in the world as most of you know the deal with this condition. I believe first and foremost in order to keep from being totally depressed and keep some optimistic thoughts, you have to have a surgeon and their team that are totally on your side and believing you do you have incredible amounts of pain and if they aren’t the ones that can assist you in reducing that pain, then they need to send you some place that specializes in it for pain management. I can’t seem to get that through to them and I’m scared to death that I will just be cast away eventually here once there are no more surgeries on the horizon. I don’t know how to describe it but I know most of the readers on here will understand that first and foremost we want our surgeons and other doctors and nurses to absolutely believe us when we say we are in pain that is the most unbelievable unbearable that we have ever experienced in our lives and need their support and assistance probably more than we even need medications. This is the biggest challenge of my life for sure. We all know it’s a living hell. I apologize for the long rant as well but the last thing we need is for others to question our dedication and commitment to working for just a little less pain, better motion, and a little relief from this hell.

      I’ve read so many stories on here of people in such incredible pain like I am and I just want to say that I wish you all the best and hope that your pain and situations get better with time. I really really pray to God that there are more advancements in this area in the future to help not only us but others that will experience the same nightmare. Others have always said and I agree, that I am one of the most optimistic positive people yet I struggle daily to maintain any optimism that this will get better yet I know I have to keep working hard to try to get another degree of motion and heal. I can’t imagine living in this kind of pain forever and you have to struggle to keep your mind from going to some very dark places. I’m sure anyone that has this condition can relate to exactly what I’m saying. Once again I apologize for the length of this but felt like it was somewhat therapeutic to even respond because you’re post was exactly what I was thinking today and just felt like I needed to agree with you.

      I’m going to continue on one day at a time and try to improve the situation but at times I really wonder how it will all turn out or how I’m going to manage the pain and all that goes with it for the rest of my life. It’s so difficult to even go day today, hour to hour, minute to minute so it’s very difficult to understand how that will all work out but I pray to God it does as this is just the worst nightmare of my life as it is for many on here.

      I wish you all the best as I do everyone else and hope your pain gets better and injury improves. God bless and I appreciate your post as I do everyone else’s!

      Reply

      mike stanton says:

      June 8, 2017 at 10:31 am

      Cameron no one and I mean no one besides the souls that have to deal with this can grasp the diverse dimensions we visit. from pain to depression to the nightmare that it is. you have captured everything that is wrong and then the deer in the head lights stare we receive when we try to explain it. I am off the meds so that I can concentrate at work and of course I am functioning at a level of pain that is incredible. No boo hoo’s I just gotta make it thru life I am 57, kid in college, retirement? After two years the mind game that plays out just to manage the day…wow you get it. This brings no comfort but you are not alone. .

      Reply

      C.Arthur says:

      September 4, 2017 at 6:32 pm

      Mike

      First, thank you because when I wrote that I WAS SO UPSET, hurting, frustrated, scared, mad, and every other adjective to describe this horrible nightmare that ONLY you guys would and will understand ( so basically what I’m feeling right now as well LOL ) and that I still feel today BUT am trying to manage a little better than I did that night I wrote my original post!!! Hahha.

      If it weren’t so painful and crazy it’s almost not beleiveable and since I’ve always been such positive person, I can almost even make it laughable since my post was borderline CRAZY that night and I even thought “oh my gosh I shouldn’t have written this and how do I get it deleted?!” Haha. So thanks for at least understanding my and OUR frustration as it’s like therapy and we all know dealing with this disease and situations it’s managing the depression, darkness, and all of the really horrible times even more than it is trying to figure out the mechanical dysfunction of the knee! I’m just so glad I have an outlet to express it where my “friends” understand it. I’m so thankful for this site and all of you!! I have learned so much from others and continue to hope!

      I did want to update and share with others the fact that I haven’t really lost any more motion and I’m so excited that I am actually going to see Dr. LaPrade at Steadman Hawkins clinic in Vail Colorado In two weeks and I think he’s one of the best surgeons in the country for this particular disease. I feel very fortunate that I was able to get in to see him. I am knowledgeable enough about this disease now that I don’t believe he can probably do anything to help the situation but at least I will have some closure and maybe a plan to keep the other knee, my hips, lower back etc. and good enough shape to avoid any procedures with them. As we all know, the knee starts to affect the rest of the body quickly!! So my best advice is to be proactive in those areas with chiropractic care, massage therapy, physical therapy, and just plain hard work on her own in order to avoid any other issues. The pain that sometimes is almost unbearable as well so you need to find a really good solid pain management doctor that understands and believes you! I think the key is on the part of believes you.

      In addition to going to get to see the new orthopedic surgeon, I also located a fabulous pain management doctor that really seems to believe and understand the mechanical issues of the knee that cause pain. He is actually the first one that I actually looked at my knee. He diagnosed it with chronic regional pain syndrome as well so I think many of you probably have that in addition to arthrofibrosis. He is it least actually trying to find ways to better manage the pain without just medication. We tried the new DRG implant for a week but I didn’t feel like it was providing enough relief to have it permanently implanted yet. But, it may provide relief to many others in the future. We have tried the common nerve blocks and injections but obviously the mechanical parts and problems cause many nerve and pain issues. Tuesday we are trying some ketamine infusion and I know it probably won’t help much for the pain but the research shows it may help with mood, depression, other things that the pain obviously contributes to. It’s very expensive but if I provide some relief or even placebo effect, I’m going to try. Anyway, it’s at least nice to see that a doctor believes me/us and then actually feels like a partner in the process to reduce the pain. Anyway, I apologize for the rambling but I appreciate your response and I’m glad to see that it wasn’t way too much as I cringed once I sent and reread it! Hahah. This nightmare sometimes causes those types of reactions I guess.

      Best of luck to all of you and thanks again mike!! I’ll keep you guys posted on my journey and look forward to reading about some more successes on here!!

      Reply

      C.Arthur says:

      September 4, 2017 at 6:55 pm

      Mike,

      I forgot to and must reiterate what Rick said that I CANT believe you do this without meds!!! Kudos to you my friend as I’ve tried and done it at times BUT I can’t imagine doing it totally without for long term BUT I think it further reinforces how strong people are that deal with this disease! That point alone and this website totally motivate me to continue every minute, hour, and day when sometimes it just feels like you can’t go on any further. It’s like, what’s the other option? There is no option other than to move forward right? My flexion doesn’t seem to be losing much thank goodness but my extension is getting tougher and tougher to maintain so I feel for you as well! I remember my Surgeon saying to me that I had to maintain the extension and I always thought the flexion was the most important but I know they are both important but I just really remembered him emphasizing extension. Anyway, I just wanted to applaud you once again on the fact that you do this without medication! Keep fighting and try to stay positive as I am hopeful that there will be more advancements in the way of pain management or at least understanding etc. for this disease in order to find some answers in the future!!! They have to do more research and education in this area!! Stay strong and god bless!

  118. I’ve had a total of six surgical procedures on my left knee after ACL Reconstruction. My initial surgery was almost 3 years ago. My flexion and extension have never returned to anywhere near normal! I walk with a limp and have developed a bad bunion and had to have a strayer procedure (where they partially cut thru your Achilles Tendon). I’ve had physical therapy after each surgery (without much, if any improvement) and my numbers are 70 and 30. I live with constant pain! I did find a new study with supporting evidence that helps me understand this condition. It’s located on the website nature.com. Type in Arthrofibrosis in the search area and a see an excellent study on this condition/disease that was released on 3-26-19. This article explains that those with ACL Reconstruction have up to a 30% chance of developing this condition/disease. Everyone should read this before having a ACL Reconstruction. I was told that I’d be back to my normal life within 6 months after my initial surgery. Instead, my life has drastically changed! I wish I hadn’t had the surgery!

  119. I had a total knee replacement Nov2017. I kept telling the Drs. about this extremely hard marble shaped scar tissue substance sometimes small and getting inside the knee. Sometimes preventing any movement at times, very little movement. Sometimes large and attached to portals. Most times the small ones gather along the incision. I had to have revision surgery March 13 2019. Having same problem. Four Drs. None with any knowledge of this type substance. I have Parkinson’s they want to blame that. My neurologist completely denies that as Parkinson’s related.

  120. I had my right knee replacement surgery back on December 5, 2018. From day one after the surgery, PT, Bending, ROM, & Pain were problems for me. My surgeon ordered an MUA for my knee on January 14, 2019. Fast forward to today where my ROM is 85, and my extension is 12.My poor knee simply does not bend properly or extend properly. My 2nd opinion Orthopedic Dr I saw last week indicated that I have Arthrofibrosis of my knee. He indicated that going to PT was no longer necessary as my ROM would probably be like this for the rest of my life.
    So my knee is constantly swollen and warm. I have literally lived on my reclining sofa since the knee replacement surgery. If I am not constantly elevating, resting, and icing my knee I am screwed. I am only 61 years old, and the reality that my mobility will probably be very poor for the rest of my life is very disturbing.

  121. My mother is suffering through arthrofibrosis 9 weeks post op for TKR and it is limiting her flexion range. She is 79 years old, has now had one manipulation treatment, and now is having daily PT with extraordinary pain.
    Does anyone have a recommendation for a PT that has a high level of experience with this condition in the Detroit area?
    Please help, her spirits are being affected pretty severely. Any other advice is welcomed.

    • Google Dr. Eric Topol. He’s a cardiologist who had this same problem until he finally met a physiotherapist who knew about this condition and was able to treat it successfully. I don’t know where they’re based but perhaps it’s a start.

  122. No matter if some one searches for his essential thing, therefore he/she needs to be available that in detail, therefore that thing is maintained over here.

  123. is there anyone in arizona that specializes in Arthrofibrosis? I had TKR on both knees back in 2011 and 2012, then an illeotibeal repair that caused an infection in my left knee.. after an enclosed wound pump and 3 infections, and another surgery the infection finally went away. that left me with my left knee without PT for a long time. any pt i had didnt help, without insurance now for all these years.. my leg will not straighten, now my back hurts so bad after standing less than 5 min. my legs get so stiff when i sit for to long or stand im so scared i wont be able to work much longer if i dont get help.. i have heard manipulation can actually do more harm this far down the road.. does anyone know anyone in arizona that knows about this arthrofibrosis, i live in a small town and have read that if i do more PT now.. it better be with someone who deal with Arthrofibrosis or your just in for alot of pain.. hopeing someone will comment.. and have some hope for me..

    • Connie my story is very close to yours. Just yesterday got a call from mayoclinic that they can’t help me. I’m searching high and low. Please let me know if you find a dr who can help

    • Hi, I just posted about my experience with this condition/disease. Please go to the website nature.com. Type on the word Arthrofibrosis. A new study was released in March of this year that has helped me understand this condition. It’s very extensive (24 pages) with tons of supporting documents.

  124. Hello Everyone. Here is my story. I’m a 50yo male. My problems all started back in 1984 when I tore my left ACL in High School Football.

    11/30/2007 on Thanksgiving weekend while standing on a ladder putting up Christmas decorations I fell off the ladder. I then tore the same ACL and had to have ACL replacement surgery. After that surgery I had the range of motion but was in constant pain and never able to walk up steps or run correctly again.

    04/17/2008 I had to go back into surgery to have the plastic screw removed that was used in the ACL reconstruction surgery removed. My leg got infected and I had a drain in my knee for 3 months.

    Things went downhill between 2008 thru 2015 and I ended up having to have a TKR on 10/15/2015. The surgery went well but I was experiencing severe pain and I was only able to get 65 degrees of motion.

    I had a MUA on 12/01/2015. They were able to get 137 degrees out of the knee. I started PT 2 days after and was able to get 90 degrees to start. Then I went and was working with a different lady 4 days after my MUA and things went really bad. As she was forcefully stretching my knee. A loud pop was heard. She stopped and let go of my leg. My knee swelled up to the size of a football and severe pain set in. I couldn’t get past 30 degrees of total motion and was unable to bend or straighten my leg.

    I had another MUA on 03/01/2016. Again, they got 137 degrees out of it. They even showed me pics of my knee bent and my heal touching my butt. Still no luck with getting past 30-35 degrees of total motion. They got me a JAS EZ flex on brace. I still can’t get past 35 degrees total range of motion.

    In 06/30/2017 I went in and the surgeon did a MUA & Arthroscopy on the knee to remove scar tissue. I started PT a few days later. Still no improvement.

    In 09/17/2017 my Doctor finally told me there was nothing else he could do and washed his hands of me.

    April 2018, I ended up tearing the meniscus in my right knee from the severe limp I developed from favoring my right leg. I also started having severe back pain and left hip pain.

    Here it is March 2019 and the knee is no better. I still need Arthroscopy on my right knee. I had a new Doctor ready to do both knees, but he ended up loosing his medical license do to a kickback scam he got involved with.

    I can’t walk upstairs, ride a bike, run, sit in a chair correctly of even sleep comfortably. The quality of life sucks. I’ve been so depressed. I regret doing the TKR.

    Can anyone or does anyone know of an Arthrofibrosis specialist or a good Orthopedic Surgeon in the Central Florida (Orlando) area…Any help will be a lifesaver. As of right now I’ve lost all confidence in the Florida medical system. Thanks everyone.

    • Dr George Haidukewych at Level One Orthopedics at Orlando Health is excellent. People come from all over the country to consult with him.

  125. I had a TKR Nov 2017. Then a manipulation in March 2018. Then a revision in April of 2018. During the revision he replaced the original prosthesis with a smaller ones cap. I also was told the prosthesis was lodged stuck in my knee cap when they reopened my knee for the revision. During all this time I had been undergoing very aggressive physical therapy;pushing down on the knee, bending the knee, then multiple other exercises I performed in outpatient therapy and everyday home therapy. After all this aggressive therapy I cannot bend my knee completely. I walk with a limp. I still do my exercises at home everyday. I just stopped using the Dynasplint 2 days ago at the permission from my surgeon. I had been using it nightly for 5 months. Yesterday my surgeon said I had scar tissue still and that is the problem but he felt I was improving, hence is the reason I was to return the Dynasplint. Is there a point where no amount of therapy will get rid of the scar tissue?

  126. This might help some of you suffering. I had a TKR about 2 years ago.
    Complications after surgery — I could not bend my knee. Then x 3 manipulations over the course of 7 months. I still could not walk or bend my knee. During this time — I was going to PT. Nothing they did
    helped my situation. I changed to a new a new PT center. A lady there had treated patients with arthrophibrosis. What could I lose — might as well give it a go — I was at the end of the line!!

    She made me lay down on a table — she then wrapped my leg with heavy heated wraps. My legs were extending slightly off the table. She then tied on a 5 lb ankle weight. I would then have to lay on the table for 30 minute increments. By the time 30 minutes was up — I was screaming
    in pain. I would then rest for 10 minutes. I would then repeate a 30 minute session. She was streching my knee not forefully bending it. I started to improve rapidly. Within three weeks — she had me walking much better.I hope this helps — pls give it a try.

    • Thank you for sharing your experience. Can you tell us if you were lying on your back, and were your knees totally dropped off table like at 90 degrees flexion, then weighted?
      Trying to get a visual…
      I’ll try anything- my rom has been destroyed by an mpfl graft, and arthrofibrosis afterward- and my yoga practice with it.

      • I’m interested in all of your details also. I will ask my PT to reproduce the technique. What were your original numbers? Final flexion? Does the stretching last? My experience is that whatever I earn in therapy is lost as soon as I walk out the door. Thank you.

  127. My doctor never told me this was the issue with my knees. I am 48 years old and trying to still work but cannot sit or stand for long periods due to my back and now both knees. I have lost a lot of my ROM and I cannot straighten either leg with my right leg being the worst. Am I ruined for life with my legs? Both legs are completely bent with R knee being worse. I am finding it harder and harder to walk. I have been going to Dr.’s since a back and knee (shredded L ACL) injury in 2003.

  128. Just had my right knee revision surgery done for the second time after a failure of the tkr components. Have always developed arthrofibrosis after these surgeries and now my big question is, should I go really hard with physio, to the point of tears, to keep breaking through scar tissue or go at rehab easily so as not to keep tearing scar tissue. I am going at it as hard as I can right now, three weeks post surgery but keep hearing different things from different doctors and different physios. What is the opinion of anyone who has beaten this terrible affliction. It means everything to me to try and beat this and really hope I’m going in the right direction.

    • Look into the x10 therapy
      My husband is having same problem, one year post surgery. We did not use x10 due to our location. Would Definitely suggest you try it if possible. Read testimonies
      Keep up your spirit of hope

      • I used the x10 for I full week. I could not make progress. It is a good therapy, but only for normal cases.

    • Hi Bob:
      I had TKR in my left knee on March 28, 2018. Arthrofibrosis set in around 3+ weeks later limiting ROM. About 16 weeks later my doctor performed the Manipulation.
      Went to PT the same day of MUA to start exercises, however, knee still remained swollen from scar tissue, stiff and painful and ROM settled in again at 85-90 degree bend and could not walk without pain, stiffness and limping.

      I had reached my insurance maxium for PT and because the therapist could not document any improvements, insurance would no longer allow me to continue on their dime.

      I found another therapist (which I paid out of pocket) just to massage and stretch the knee 3 times a week for three months, then 2 times a week for two more month.
      Plus therapist gave me exercises to do at home which I faithfully did. I also purchased a recumbent exercise bike.

      No, or very little, results for the first two months and then I started walking better and eventually waking without limping. The walking took away the pain in my back and made me want to get out more which helped strengthen the knee muscles.

      Eventually, in my 10th month post surgery, I was not only able to walk without a limp (still some stiffness though) and begain to walk down the stairs properly. I am still goig to PT for the stretching and still doing my home exercises in my 11th month post surgery. The scar tissue is still limiting but am happy for the slight improvement, slow as it is. The pain is gone, stiffness has decreased, movement has increased.
      I might still be able to gain a few more degrees without having the scar tissues cut out.

      So my advise is to get seek counsel from a PT on the best exercises to strengthen the knee, do the exercises and continue on the bike daily. Get out and concentrate on walking properly (heel, toe, bend ankle) through the pain and stiffness and see where you are a year post surgery. Please don’t give up.
      Fran

      • I pray your journey was true for all of us. I am thankful you have had some progress. Right now I am ready to give up. I need to see someone has made progress.

      • Fran what was the name of the pt that did the massaging and stretching

        Would love to look them up to see if they could help me

  129. Hi is there anyone in Australia with any expertise, especially Western Australia. I was so active and competing and now nothing. Only one surgeon out of 26 diagnosed this condition and he offered no hope.

  130. I had a TKR on my right knee in October 2016. I was never told that there could be a possibility of the procedure going wrong.

    Instead, I was told my life style would be so much better because I had suffered from osteoarthritis in both knees for so long.

    Since then I went through rehab after the surgery, physical therapy, water therapy, 2 manipulations, much pain and suffering, and three Orthopedic Surgeons, two, that did not want to touch my knee.

    Along with this, I had planned a move to another Georgia, in January 2017, and when I landed at the airport, my Primary Care doctor called telling me of the results of my mammogram, part of my physical check up before I left, and that it was abnormal.

    We were looking for a possible Lymphoma, since my Lymph nodes were swollen, underarm and groin area. Needless to say I was shocked and totally disappointed.

    This resulted in a return to the Boston area, additional biopsy surgery on the largest groin node. It was benign.

    Following up, the inflammation level in my system was very high causing the lymph nodes to respond. The OS said it was not infection, just inflammation, argumentatively.

    He did a manipulation, I left Boston, and still dealing with this condition.

    I am writing to say I had sent for and received my medical record, and find that he had written in a final diagnosis on the manipulation form after the procedure, Arthrofibrosis.

    He never discussed this with me, or suggested any further treatment or any doctor who could care for me after my move. Why??

    My knee is bent, painful and still has inflammation, that he said would go away. I was left in the dark,until I found this site to inform me about this condition.

    I will seek out a doctor on the list, in my state of Georgia.

    But, I do feel that my original OS abandoned me, and maltreated me when he did not inform me of his diagnosis, or suggest where to go if he was not expert in this area. Also, what was he basis for his diagnosis before, and after his manipulation, when there was no scoping of the knee or examination, by him.

    Is this malpractice??? What can I do other than seek out an expert in my state? I do understand there is one on the list.

  131. I would just like to use this opportunity to share a positive little story with people out there suffering from arthrofibrosis:)

    I remember when I got my knee atrhrofibros diagnosis after an ACL replacement surgery some years ago, I searched the internet for all the information I could get. Among all academic litterature I found, I couldn´t stop myself from also reading about peoples personal stories. And then I got really sad and scared. It seemed to me there was overwhelming stories with “bad endings”- people with endless pain, wheel chair and bad lives. I sat down and cried and promised myself to do all I could not to end up like that. I was 30 years old and way too young to loose one leg.

    I followed a heavy physiotherapy program immediately after a “clean up” surgery, and yes -it was a lot of pain and hard work. But I knew that if I did everything right I would give my body the best chances to recover. It took loooong time and I have no idea of how many hours with painful mobilizing and tiring muscle exercises I have been through, and still have to do a little bit.

    BUT: after 5 years I am now able to have a complete and great life with lots of activity!!! I am an active dancer, sailor, runner, hiker and climber. My knee has full extention and almost full flexion. I still have some very mild pain, but it is maybe a total of 3-4 days every year- almost nothing. And almost never any swelling or heat in the joint.

    I now understand how extremely important it is not to give up and get depressed. I believe there are lots of successful stories out there, but these people doesn´t take their time to share their stories on a page like this. Instead of digging yourself into this sadness for too long- be constructive and read and learn a lot- and practice what you learn. Keep in mind that you can not recover from this illness without doing a lot of physiotherapy. You have to take it serious, be strong, patient and never ever give up!! I got a lot of inspiration from Heidi- “injuried athletes toolbox” from whom I found good and positive advices in my situation. Highly recommend!

    Stay positive, and do everything you can to make the best out of you situation! It is possible to get better and even become completely healthy:) 🙂 🙂 And best off all, you learn to appreciate everything else in this life that is worth being thankful for.

    • Thank you , I needed a story with a great outcome. I have had issues since my initial ACL repair in February . I am making very slow gains, and I feel very down . I’m 43 with three kids and I can’t give up , but some days it seems like I’ll always be like this. I hope my story is like yours, sincerely ,
      Nikki Sullivan

  132. I had a RTKR on 4/20/18. Within 4-5 weeks I started losing mobility when extending the knee after I had been seated. I had a distinct clunk, and severe pain and crepitus. My OS originally blew me off, then wanted to do an open surgery. I refused, and had an arthroscopic lysis of adhesions. Knee is hot and painful, with radiating pain. Quads are trash. Knee is hot, sensitive and stiff I can’t drive Any distances. What next? I need to get on with my life

    • I had basically the same thing happen. After the lysis he got 95 degrees on the table. Not much! After that I used CPM and did only slow slow gentle stretches. Plus lots of icing. It took about a month before I passed 90 degree bend. Read Dirk Kokmeyer’s article on recovering from arthrofibrosis. You have to actually minimize PT initially because the inflammation is associated with arthrofibrosis.

  133. Hi,

    I fractured my left knee tibia plateau on 02/04/2018 and went for surgery on 9th Feb. It was an arthroscopic partial open surgery. I started PT on 20th Feb and doing continuous PT (3 times a week) since then and got around 90 degree active flexion with extension around 3-5 degree. My Dr says I developed arthrofibrosis.

    – I saw 3 different doctors in the Seattle area and they all have different opinion. Doctor who did the surgery seems convervative and suggest to continue with the PT – Second doctor says to immediately go for MUA while 3rd doctor says to wait for another month and then possibly go for MUA along with arthroscopic removal of scar.

    Now I’m completely confused. Any suggestion as what to do?

    – Any recommendation for doctors who have experience of treating ‘fractured knee arthrofibrosis’ in Seattle or WA area?

    I’m in pain and very frustrated – request you to kindly advice on my condition.

    • I flew from Seattle to Salt Lake City to see Dr. Leon Paulos. Its a short flight, he is nationally known for fixing Arthrofibrosis. I highly recommend him .

      • Thanks Teri.

        Can you please explain the condition you were facing? What was the treatment given to you? Was it MUA or surgery or anything else? Was it completely fixed?

        Thanks again.

  134. Hi there,
    I have had an ACL graft and meniscus repair then a second meniscus surgery. I have now been diagnosed with a small fat pad impingement and Arthrofibrosis on the lateral side of my right knee (surgery leg). I don’t really know what to do, I have done a lot of physiotherapy and feel like it is not working. Has anyone got any advice on how to improve the outcome of this injury, does massage help break down the tissue?

    Also is surgery an option if the pain continues.

    Tom

  135. Hi, am 36 year old male based in Singapore who underwent left ACL reconstruction surgery. 15 months post-operation, my knee flexion is only 100 degrees and extension +7 degrees. I saw two OS and they both believe I have arthrofibrosis. However after doing research especially on this thread I am convinced I need to see a knee arthofibrosis specialist. Any recommendations of specialists here in Singapore? Please help I am desperate.

  136. I was just told I have AF but don’t remember me injuring my shoulder nor did I have surgery. My symptoms started off with my bicep area hurting (was told by first doc that I had bicep tendonitis) .. when it didn’t get any better went for PT was told it was rotator cuff … got mri was told I had AF. Don’t know anyone who has this but is it common to get shooting horrific pain when you move your arm in a certain location? There is a constant throb but if I move a certain way it practically drops me to me knees . Starting PT in a few days but so nervous it’s not going to help

  137. I had a knee replacement in October ’17. With therapy made slow progress with flex, but not with extension. In January, had “manipulation”, then continued therapy with no improvement. Was told that genetic tendency to scarring could not be helped with continued therapy and to expect total of 18 months for improvement.

    I have not been able to find anyone in Hawaii with arthrofibrosis treatment experience. Is there anyone in Hawaii or near west coast that can help?

    • Hi Larry,

      This is Mona. I had AF since my TKR surgery in December 2016, 3 more surgeries then. To be very open I doubt you will find anyone with experience treating AF, there is no treatment per ce, you just need to start trying multiple things. This is the list of items I have tried so far:
      1- Cortisone injections (they give you temporary pain relief for 1-2 months)
      2- Graston therapy using densed stainless steel tools. I got the tools myself on Ebay and watched a YouTube video then asked my PT guy to learn. This method helps soften the hard tissue, you can do it yourself once or twice a day
      3- DO NOT stop stretching and flexing your knee exercises, don’t get discouraged

      I hope the above provides some help. Good luck.

      • Thank you, Mona, for listing the 3 things that helped.

        I, too, have AF.

        Am continuing exercise and PT, out of pocket now as I used up all my allowed insurance visit.

        Will get that tool and try to learn how to use it properly, given you said it helped.

        Best,
        Fran

  138. I am a 54 year old woman from the UK who has participated in sport most of my life. Thirty years ago I snapped my cruciate ligament whilst playing ladies football, I had a number arthroscopies before I had an ACL reconstruction in 1991. My knee never fully recovered and I stopped playing contact sports. In 2010 my knee was deteriorating and I went back to see my specialist who told me I needed a knee replacement but as I was in my mid 40s I was told I was too young to have this procedure. In January 2017 I was finally admitted to have my knee replacement as I was struggling to walk and the pain was awful. I was told that it would take 12 weeks for me to recover. Over the next few weeks I struggled to bend and straighten my leg. I was at the physiotherapist twice a week and things were getting no better. I was re admitted to hospital in May 2017 for manipulation under anaesthetic, unfortunately this didn’t really help. When I went back to see my specialists he said there was nothing more they could do for me and I left feeling devastated as I was still using crutches to get around. I spent a fortune hiring a CPM machine to help me try to bend and my knee but nothing changed. My physio told me to see another surgeon in Manchester (about an hours drive away) who took me under his wing. He did an exploratory operation in December and said the arthrofibrosis I had was very severe so I decided to let him remove the knee replacement fitted in January 2017,cut away the arthrofibrosis and re fit a new knee replacement. This will be happening on June 5th, in just over 2 weeks time. I have basically spent 16 months on my back, off work on the sick, cannot sit up for long as my knee swells badly, can’t walk far on my crutches as again my knee swells. I am praying that this operation works and the arthrofibrosis doesn’t return but I am sceptical. I have read lots of forums and haven’t really come across anyone who has had this ailment who are now arthrofibrosis free and living an active life. I will keep you updated with my progress…

    • god bless you wendy skerritt I am pulling for you. I feel your pain and aggravation. at 58 I had my first surgery in 1981. many, many more since.
      however the pain however the range of movement we must move forward and live. i live a full life working raising kids and dogs all that. i have learend to deal with my adversity the beat I can without going insane. I have partitioned my brain to run the fibrosis portion in the background. silently yet always present. as stated before every step accounted for every movement meant to protect myself from falling or otherwise creating more injury. I wish this never happened I cannot go back in time. I trudge forward thinking of others who depend on me and I smile thru it. best of luck and I do understand all of you here.
      mike

    • There are doctors using an experimental drug that slows down fibrosis at the Steadman clinic in Vail COlorado. their names are listed on this website. It is used to slow kidney disease as well. Should be taken a week or 2 before surgery and 4-6 wks afterward. Has shown great promise.
      Also patella mobilization in all directions 4 X daily to keep patella from adhering by sterile gloved hands. And flexión but not too vigorously. Need a good PT twice daily. Patient also twice daily. Infection prevention is imperative. Keep everything sterile. Infection means hardware must be removed. Antibiotic IV for months. Replacement of hardware. So be vigilant! Buy sterile bandages and gloves. Big web retailer a source. Best of luck!

    • Hi Wendy, your story is uncannily similar to mine, hiring of CPM machine and all…
      I’m also from the UK and was 54 when I had TKR on my right knee at the end of Feb this year, I then developed AF about 7 weeks in. It took a few more months of me saying over and over again that something was wrong before my consultant sat up and took notice and diagnose me. Since then I’ve had 2 MUA’s and also scar tissue removal all to little effect.
      I spent 6 months off work so far between procedures, I’m still on double crutches and debilitated by this condition but I’m back at work part-time but it’s a struggle so I’m doing my best to get on with my life and adapt.
      My main reason for replying to you was to see whether you had the surgery to cut away the arthrofibrosis and fit a new knee?

  139. Anyone out there develop arthrofibrosis after only having an arthroscopic procedure? I can only find info about developing arthrofibrosis after a TKR or other “open” surgery. I’m 35 and developed pretty severe arthrofibrosis in Aug 2017 after what was a very simple procedure. I’ve since undergone a lysis of adhesions in Oct 2017 and a MUA with a BMAC injection in Feb 2018. I have been doing PT at least 3 days a week since the first surgery. My Dr has ruled out infection, autoimmune disease, tumor, and CRPS. I have stretches of time where I make good progress, only to stall out a few weeks later. I’m just curious as to what could have caused me to develop arthrofibrosis and if there are others out there with a similar situation?

    • mike s says to Kortney:
      Kortney this is a comment I left Feb 5th to Alvin.
      Like I mentioned some of us are just predisposed to this monster.
      mike

      February 5, 2018 at 12:13 am

      Alvin I experienced my first bout with af with just a scope and repair. I managed that no problem for years. directly after the total replacement hoever the af went turbo in my leg. nothing nor no one could keep up. as stated in other posts the af is up to my the middle of my quad. us 1% folks are pre-disposed.

    • I have developed Arthrofibrosis after a second knee replacement. I was told I would never walk the same again. This happened in 2014. I have learned to deal with it because I was told another surgery will not guarantee improvement and after 2 surgery’s and an manipulation I just did not want to go through it again. I have started working out and my knee is stronger. Stray strong and try to do what’s for you mentally and physically. Wishing you the best of luck

    • I also developed AF through a simple scope. Had a manipulation and scar tissue removal scope. All of this within 8 weeks. Still struggling to achieve extension. Currently at -4. Flexion is great. I am determined to fight this and get back to my life!

  140. I am 9 months, post-op, bilateral TKR. Was diagnosed with Arthrofibrosis. Had an MUA Dec 21st. I am SO miserable, frustrated and hopeless that I just don’t know where to turn. The pain is crazy! Even 10-20 minutes of “life” (standing, walking, moving) is too much! We’ve done every test possible, tried more modalities than can be listed…NOTHING helps!

    I read these posts and just get more hopeless. I was hoping scar removal would help, but the posts have me scared of that. Cortisone injections don’t seem to provide relief. Has anyone found anything that helps at all?

    Sigh…

    • Hi Kim- I am reading through these stories and yours sounds a lot like mine- albeit a different knee surgery, but the pain is so insane. Just wondering if you ever healed.

  141. I have a condition that has been described as Arthrofibrosis of my ankle following to an injury to and surgery on my deltoid ligament. I have looked through your abstracts and the articles you reference on your website and you have many interesting articles regarding knee arthrofibrosis. I could not, however find any information about the ankle. Do you have any references hints or ideas that may be helpful, particularly pertaining to rehabilitation procedures and techniques please?

  142. After my lst knee replacement, horrific pain, unable to get good range of motion, very swollen, hot knee, I was diagnosed with CRPS (RSD). I didn’t believe I had that condition, and didn’t want to believe it. Just last week, (almost 6 years post lst replacement, (2 revisions, 3 scar tissue removals, and 3 MUA’s,), I have very uncomfortable itching/burning/stabbing sensation on both elbows,especially when I lean my elbow on a hard surface. I’m thinking it could be CRPS. So now with the Arthrofibrosis, should I cancel my Open Lysis surgery on that same knee. I have 24/7 pain, inability to walk correctly, stand, bend, etc. etc. In the near future I need back surgery. The back surgeon said it would be beneficial if my knee was more stable in order to handle post surgical back rehabilitation. Do I not get another knee surgery? I’m very concerned that I might make the CRPS symptoms worsen. Yet, I want/need to not have the pain/discomfort and limited ability to enjoy life. Any opinions. My knee surgery is scheduled for the end of June, only because I’m a teacher. I want my life back. Between my huge, warm, stiff knee and the severe Sciatica going down the other leg, groin, and butt, I’m a physical, and emotional mess.

    • You definitely sound like you have crps. My neurologist who specialises in crps told me that surgery can aggravate the crps but if your pain is already that bad and the surgery can help with your mechanical issues then go ahead with it. Each case is different. But my crps pain is horrible I get it 24/7 most of the time at a 10. My ortho had a surgery that he said would help with one of my mechanical issues so I had it done, I did have a horrible 2 months but it helped with some of my mechanical pains so it made it worth it. At the end of the day it’s down to what you feel is right, will the surgery help improve pain or movement? Movement helps crps and when you have multiple issues you need to deal with them one at a time.

      • I should clarify the crps pains are still there whether they are worse after the surgery is hard to tell because crps is hard to understand even when you have it. All I know is I don’t have a pulling pain where my patella Baja is because I have a plate there now, but I do have pain from the plate instead. You will find it hard to find a doctor who will operate on your limb if you are diagnosed with crps I saw doctors for a second opinion and most of them said they wouldn’t because of my crps. Even after already having had surgery on my knee I’m in a similar position to you not knowing whether I should have another surgery on my knee due to the crps, it is very frustrating. Sorry if that is no help at all.

      • Yeah at the moment I am tossing up between amputation and fusion but half of my doctors agree with amputation the others don’t. I do think quality of life wise amputation is the way to go but I think I just want to take it one step at a time if that makes sense

  143. I was injured in December 2014, I was since diagnosed with arthrofibrosis, complex regional pain syndrome and patella Baja. I have between 0-20 degrees range of motion but my leg is always kept out straight as any movement causes me pain. I am unable to lift my leg as I have no control of my quads. I currently use a wheelchair everywhere other than my house. The complex regional pain syndrome causes my knee to interpret everything as painful. The patella Baja was a contracted tendon that pulls my knee cap down I had a tibial shift last year to try help with that. I’m taking medication for the CRPS as well as the arthrofibrosis. I have an interthecal pump that has clonidine and hydromorphone, I also take lyrica (for nerve pain), baclofen (for spasm) and femostin (hormone replacements). I also have palexia for when my pain gets really bad. I’ve had cortisone injections about 5 time I’ve had 2 arthroscopies and a manipulation followed by the CPM but I couldn’t last even 2mins and only got to 20 degrees. I’m currently looking at a knee fusion to try and get out of the wheelchair and do more with my life. I had a brace made up but due to the crps I couldn’t tolerate it it was one that went from mid shin to mid thigh, my orthopaedic surgeon wanted me to get a full leg one but the place wouldn’t make it. Has anyone had any experience with a knee fusion? has it helped?

  144. This is my second post, wanted to share some information maybe it will help some AF sufferers. I had my TKR in December 2016, was doing very well post surgery with daily PT, within 6 weeks I started feeling pain, swelling and stiffness, with reduced ROM. Has manual manipulation, two arthroscopic surgeries since, last surgery was December 2017. Tried experimental medications, PT, and everything else anyone can imagine. Still the hard scare tissues kept coming back and spreading to encapsulate my knees and spreading to my legs and thighs.

    I heard that cortisone injections may help so went for it four weeks ago. This is the best I have felt since the original TKR surgery. I feel the cortisone injection to the knee, is helping to break the scare tissues, I constantly feel cracking in the scare tissue layer covering the knee. This coupled with ‘deep tissue mobilization” therapy by my “hero” therapist, who started also to use “Gratson” tools(look for it on YouTube).
    All of the above is helping, My ROM is improving, I can for the first time in months without the help of a cane, pain is minimum and I am very encouraged. I wanted to share my experience with everyone, hoping that this may help others going through what I have gone through struggling to fight this stubborn scare tissue build up.

    Graston tools are medical tools, made of high density steel, my therapist use it to break hard tissue and “mobilize” it so it is not “glued” to tissues, muscles and my knee cap. There is a video on YouTube you can ask your therapist to watch and try it on you with the tools. Good luck everyone

  145. I had a Partial onmLeft 9/13, then converted to total 9/15. Persistent swelling, warm to touch etc. had to have ankle surgery on the same leg and my podiatrist offered MLS Laser after the ankle surgery. Best recovery I’ve ever had. I’m now doing 10 sessions on my knee and the swelling, pain etc is extremely improved. Another surgery is not an option. I paid out of pocket for the laser therapy but it’s completely worth the price!!!!

  146. Hello I had my first TKR on my right knee January 8th of this year and already had to have a MUA on March 5th. My knee will not straighten and will not bend properly without excruciating pain. My PT spoke with my surgeon and he tells her that MENTALLY I am blocking progress! I am in PT five days s week and do my home exercises yet my ROM seems to be stalling.

    Could this really be a mental thing?

    • Nicci, I have had arthrofibrosis for decades and, on more occasions than I care to remember, was told “It would bend if you wanted it to” by both surgeons and PT’s who know absolutely nothing about arthrofibrosis. If you have a knee full of scar tissue there is no way on God’s green earth that it will bend, regardless of what they do, and they more they try to force it the more inflammation, tearing and bleeding they will cause which exacerbates the problem. My current rheumatologist had a very accurate description of a knee with AF. He said “it is as if your knee is internally casted in cement”. While you may have apprehension because of the pain, if you have AF it’s not going to behave like they think it should.

    • no , it is definitely not in your mind. I had a left a left TKR in 2007 and due to the extraordinary pain and the overhealing I have been left with a stable, but limited rom knee. i had the knee manipulation 6 weeks following surgery. i have less than 90 degrees of motion and find it difficult to stand up. I was told by an orthopedic surgeon years later that the pain was thought to be from RSD and it happens in 30 % of knee replacements. I have gone to therapy on a regular basis for years. The problem now is what am i going to do about my right knee which needs surgery?

  147. My lst TKR (2011) left me with severe Arthrofibrosis. Had 2 revisions, and 3 scar tissue removal surgeries/(open lysis of adhesions,)…and NONE were successful in reducing the swelling and the pain in my knee, and leg. (I went to Chicago for one surgery, Dr. Finn-specialist in the field, spent 2 months there, and still no success) Dr. Mayman in NYC is doing a trial study using an amniotic patch to try to prevent scare tissue from growing back. Had that surgery last summer, but unfortunately my body produced an opening in my knee area, however NOT THE SURGICAL SITE, that kept bleeding, had 2 ER visits, and was forced to stop my PT program for awhile. I am planning to have this surgery again, BUT, should I? After 6 surgeries, should I bother to try again? Has my knee told me that there is no hope? Should I just give up? I ‘m in pain every day, all day for going on 6 1/2 years. My quality of life/activity/happiness, has diminished. I’d like to be active and happy again. I know there are no guarantees, and the choice is all mine. I’m not concerned about the surgery. However it’s 2-3 months of PT and healing AGAIN! If you’ve had similar, any thoughts, please let me know.

  148. Hi my name is Russ, I’m 55 years old. I had my first total knee replacement in January 2016, went through hell with it, had a manipulation a few months later, then had it scoped, never got better, finally found out I got Arthrofibrosis. After still fighting with the terrible pain and swelling I went to Doctor in Colorado, he found out The first knee replacement the doctor put in was too big and had the bottom part in crooked too boot. He advised a total knee revision. I just had a total knee revision in Dec 2017, still terrible pain & swelling, they had me come back in for a Knee manipulation in Feb 2017, the dang pain is worse now than it was. Getting very discouraged and down. The doctor now wants to put me in a knee felxation splint, has anyone tried one ? It just sounds to me like a lot of pain and not sure what it is going to do about the Arthrofibrosis !!

  149. I was recently diagnosed with arthrofibrosis of the elbow joint. Almost a year ago I took a good fall and shattered by radial head and tore three ligaments in my elbow joint. I underwent radial head replacement where I received a prosthetic radial head. I had two additional surgeries to get my lengths (radial head that is) correct. Now sitting here a year later, my surgeon says I have excessive scarring and possibly small bone fragments possibly around my elbow joint. I’m awaiting my referral to another surgeon who has agreed to take me on and do an open surgery release of my elbow joint and hopefully get some mobility back.

    As for pain its up and down…some days its awful and some days it is there, but tolerable. I have very little flexion and mobility in my elbow joint and can’t rotate my wrist and have trouble with mobility in my hand. Oh–I’m right handed and this is my right elbow. I often have pain not only in my elbow joint, but also in my forearm and shoulder.

    I’m hoping my new specialist can help me. Can anyone tell me what to expect and what some options are for me. Thanks!

  150. I have been living with arthrofibrosis since my right knee replacement in 2015. Last spring I received Physical Therapy for Graston Technique and though it improved my ROM, I still do not have full knee flexion and extension. Because of compensating for the lack of range in my knee, I now am dealing with ano achillies tendonitis.

    I now have to have my other knee replaced and have partnered with my physician on a care plan to try to have a better outcome. I am still concerned about how the right knee will impact my left knee replacement recovery. If this is similar to your journey, do you have any Suggestions?

  151. I have posted before. Is there anyone out there with knowledge of someone in Scotland who deals with Arthofibrosis. All the comments seem to come from America. I am due to have a revision of TKR and I am dreading it. I had aggressive therapy after my original TKR. My knee was like a balloon about to burst and I was always in excruciating pain. I have had the same pain from day one of my op and have always been of the opinion that something is not quite right apart from scar tissue that I think I obviously now have. I did everything that was asked of me regarding physiotherapyand I was always worse off. Can any professional in Scotland advise whether I should go ahead with the revision. I have been told that there are no guarantees. I just want to be able to bend my knee without pain so that I can sit in a chair comfortably.

  152. Is there any medical professional who can reply to our questions about arthrofibrosis and it’s treatment online?

  153. I had a TKR January 2016 and 6 months later I had an MUA because I could not bend my knee, consultant got my bend to only 90 Degrees. After aggressive physiotherapy and excruciating pain,my therapist would not treat me any more because it was just causing more pain. I bought an exercise bike and persevered in terrible pain. The day after exercising I always felt worse and the bend in my knee was just not happening. Consultant said that I had Arthofibrosis and as there was not a lot known about this he couldn’t help me and sent me for a second opinion. Second Consultant is willing to do a revision of my TKR (with no guarantee of success), and replace the prosthesis with a hinged joint which he says works better for patients who have a revision. I had a guarantee date of 23rd January 2018 (today) for my operation only to be informed that my Consultant’s waiting list is 26 weeks. I am now at the end of my tether. I walk with a limp and I can not sit comfortably in a chair unless my leg is raised. Is there anyone who can give me advice on pain therapy.

    • Hi Dorothy,

      I had similar experience after my December 2016 TKR. I since had two manual manipulation and othroscopic surgeries, only to have the scar tissues come back again. I did metal allergy blood test which showed I am not allergic, even with severe case of hard tissues build up after all four surgeries. My advice is to re-evaluate the revision surgery and whether you will really not go through the same issue of scare tissue build up, there is no guarantee unless you do the metal allergy test first to make sure that your have allergy to a metal implant, and that a revision surgery will not just add more complications without solving the scar tissues build up problem. I also found out that using anti-inflammation cream Diclofinac Sodium cream helps a lot with the pain. My therapist is also using Graston technique and tools, which are helping a lot. Good luck.

    • My understanding is that the AF following knee replacement and arthroscopic knee surgery are somewhat different entities.

      • I was originally diagnosed with osteonecrosis which led me to having tkr. I am now worried in case more of my bone is dying, 2years later. I just do not know what to do for the best. I am on no medication as nothing works, I just have to suffer the pain. X-rays do not show anything wrong and I have never been offered an MRI. Does anyone have an opinion.

    • Alvin I experienced my first bout with af with just a scope and repair. I managed that no problem for years. directly after the total replacement hoever the af went turbo in my leg. nothing nor no one could keep up. as stated in other posts the af is up to my the middle of my quad. us 1% folks are pre-disposed.

    • I have had the same pain from day 1 of my TKR. Original consultant says I have Arthofibrosis. How can that be right from day one of my op. 2nd opinion Consultant doesn’t know why I am in pain and cannot bend my knee but did not mention Arthofibrosis. I do not know who to believe and am dreading having a revision in case I end up worse. I can not travel in a bus, train or plane as I can only keep my leg elevated without pain.
      I live in Scotland and wish I had the money to go somewhere else for a true opinion

    • Yes, I have developed AF after TKR Aug 2017. I am having difficulty finding help in the Seattle area. I want to know which specialist will treat AF after TKR. I am 55 and want my life back! Please someone advise….

      • Hi Teri,

        I am in Seattle as well, had AF after a December 2016 TKR surgery. I tried so many different techniques and medications, in addition to 3 manual manipulation and arthroscopic surgeries. Feel free to call me, I can provide details on my experience as I am doing tons of online research and working with two different surgeons and a pain management specialist in addition to a very experienced physical therapist.

      • Hi Mona

        I had TKR 30 months ago with limited ROM after (<90 degrees), had MUA six months later during which the surgeon claimed they got to 115 degrees.
        But the very next day was back to less than 90 so I strongly suspect Arthrofibrosis although no one will specifically diagnose it as such.
        Intensive physio (I have a high pain threshold) did nothing and I am now wondering if this in fact aggravated the condition.
        Belatedly I am now looking for other non surgical options, would enjoy discussing with you.

        Chris

  154. I live in the Seattle, WA area and do not see any surgeons in my area with a lot of experience. Does anyone have any personal knowledge of one? I am desperate for treatment. Thank you in advance.

    Teri

  155. Does anyone have any information about the use of “anakinra” for treating arthrofibrosis? I would appreciate hearing from you. Thanks.
    Ann

  156. Does anyone have any information about the use of “anakinra” for
    treating arthrofibrosis? I would appreciate hearing from you. Thanks.
    Ann

  157. ok I just have to ask this question as simple as it may seem I need to understand at what level of fibrous you folks are dealing with? now to clarify my query a bit let me explain briefly were I am at with this vile disorder. then feel free to chime in.
    the fibrosis in might right knee is thick and unyielding.
    it is to the extent that it has pulled my knee cap downwards.
    i can only bend my knee 20 degrees.
    the fibrosis inside and thruought my quad muscle has migrated up past my turniquite line. this condition hurts more than my knee at any given moment. the quad muscle affected by the fibroius is as hard as steel and non elastic. when touched it feels like pressing on the bark of a tree.
    so as stated i am just curious as to the extent of your fibrosis and the amount you are dealing with.

    • Hi,I might have a tad more range of motion than you, but your symptoms & mine seem quite similar.
      Chronic pain, physically disabled, no quality of life. My first knee replacement was 6/2011( previous to that I had a bad surgeon/bad surgery 1981, then 3 scare tissue removals after that). Since my 6/2011, i’ve had 5 more surgeries. 2 revisions 3 open lysis or arthroscopic scar tissue removal, and the last in 6/17 open lysis and placement of patch containing amniotic fluid-good research being done with that, but my body decided to bleed from a small area not in the incision, and because of that I had to stop PT for awhile, which of course stopped my ability to ward off aggressive build up of scar tissue. I also had 3 MUA’s. I would/will do ANYTHING that could/would help my horrific condition. I hate being in constant pain, and worry about when I’m old (I’m 62 now, lst knee surgery 37 years ago) Except for the horrible doctor I was recommended to for my lst knee replacement, Ive gone to TOP QUALITY DOCTORS, local, nyc, and also spent 2 months in Chicago under Dr. Finn’s care. There doesn’t seem to be any answers for tough cases like mine. So upsetting and frustrating. I use to be active, sports, etc. worked out 3 – 4 times a week. Now between my knee and a severe back condition which is somewhat related to my knee, I can’t exercise at all. If you hear of ANYTHING that might help us, please let me know. (I go through surgery fine, I’m up and walking, (of course w/ some pain), but able to do PT, highly motivated, and a very conscientious/involved PT patient. Then at 2 WEEKS! , my body has developed that horrific scar tissue, and I can’t break through…..there has to be a cure!!!!

      • the only treatment that has been offered is to have the appliance remove and a mechanical or hinged knee put in its place. a radiation treatment may be applied to thwart off fresh scar tissue locally however the problem that remains is the fibrous that has turned my quad into a non elastic muscle will not flex and allow extension of the leg. that is the big picture.

    • Hi Mike, I have been dealing with atthrofibrosis for almost 5 months. I broke my patella in half with the top half lodged in my upper thigh (Quad) on September 1, 2017. I had surgery on September 7. I had a cast for almost 5 weeks, did not know at that time ithat I had AF. I worked hard from October 10th, with no progress. I could only bend 20 degrees or so. I had a manipulation on December 4th. I wish I had not done that, because the AF started growing with a vengeance. My body considered it ANOTHER trama. It was frozen straight I could not move it at all. I also felt my thigh had hardened it felt like a manikin. It was AF. Went back to my Dr. and realized from the manipulation that I had AF. So I went back in on December 14 and he removed so much scar tissue he literally had to pull it with his hands to get it from my thigh as he did not want to make the new incision up into my thigh as I would need to be in a cast again. So after that surgery I went home was put immediately in a CPM machine 24/7 I eat sleep and live in this machine. I have just purchased one. I have been renting one. I also iced and elevated my leg frequently. I went to physical therapy twice and realized it did more harm than good at that time. So my Dr. and I decided to back off and to start 800 mg. Ibuprofen daily. No physical therapy for 3 weeks and continue my CPM 24/7 stopping only to use the bathroom. I just went back Monday and I measured 65-70 degrees and on my CPM I am doing 82 as I type which translates to be the 65-70 degrees!! I was elated. I know I have long way to go , but I am hopeful that I can get past this unbelievably bad situation and get my life back!!!!! I hope to give you some hope as well and you are not using a CPM you need to. My leg would be frozen straight if I didn’t have it.

      • great news from you! I’m beyond the machine. I too fell and broke my knee cap 5 months after the replacement surgery I don’t have to tell you how much fun that was. came out of a 3 month cast at 0 deg. at about 20 today. as I type this the af in my knee has pulled my repaired cap downwards towards my tibia and it feels as if the shin bone has been hit with a hammer all day long. I have a pending visit to the u of m medical center as it will be my last ditch effort then maybe removal they can have the damn leg.

    • I’m in the same situation I have between 0-20 range of motion but my leg is always kept out straight as any movement causes me pain. I am in able to lift my leg as I have no control of my quads. I currently use a wheelchair everywhere other than my house. I also have a condition called complex regional pain syndrome which causes my knee to interpret everything as painful. I had patella Baja (a pulled knee cap) but I had a tibial shift last year to try help with that.

        • I also have a complex region pain syndrome so I’m taking medication for that as well as the arthrofibrosis. I have an interthecal pump that has clonidine and hydromorphone, I also take lyrica (for nerve pain), baclofen (for spasm) and femostin (hormone replacements). I also have palexia for when my pain gets really bad. I’ve had cortisone injections about 5 I’ve had 2 arthroscopies and a manipulation followed by the CPM but I couldn’t last even 2mins and only got to 20 degrees. I’m currently looking at a fusion to try and get out of the wheelchair and do more with my life.

  158. Hi, I’m wondering how many people with AF are on disability insurance of some kind? I’ve been dealing with it for 10 years, trying to run restaurants for a few of those years, and it just gets harder and harder to do the things (stand, sit, bend, lift, etc.) that you need to do to work full time.

    Thanks for your thoughts on this…

  159. I had (L) total knee replacement Dec. 5, 2016. I finished PT and was doing great. I started feeling movement in the affected knee at that time, without pain. As the weeks went on, pain began, increasing in intensity quickly. Six months later (June 5, 2017) another surgery due to excruciating knee pain. My Orthopaedic Surgeon (Dr. Raymond Wolfe, Premier Orthopaedics, Glen Mills, PA Phone: 610-876-0347) performed another surgery and discovered a rare arthrofibrosis the size of a baseball between the patella and tib/fib. I am reaching out to this Foundation for help. Are you familiar with this rare condition?

  160. Hello, Fellow Sufferers,
    I would be grateful to hear from anyone who has any information about or experience with amniotic membrane treatment
    for post TKR arthrofibrosis. This new procedure is being done at HSS in New York and maybe other places as well. Please let me know if you have any information. Thanks.
    Ann H.

    • I had the amniotic patch surgery done last summer. I truly believed and hoped that was the answer. Unfortunately for me, my body destroyed my chance to see if the amniotic patch would work. My knee started to bleed out from a tiny spot that had nothing to do with the surgical incision. It didn’t stop bleeding for a long while, so the dr. had to tell me to stop PT. That was the end for me. I think you should try it! Dr. Mayman is an excellent, kind, compassionate dr. I hope to re -do the surgery again. Unfortunately I have to deal with a serious spinal disk problem lst. Good Luck to you. If you have any other questions pls. ask. I also went to Dr. Henry Finn in Chicago. Heard he was the best in the Arthrofibrosis field. Unfortunately I’m pretty sure I needed a MUA at 2 weeks but, Dr. Finn disagreed. Spent 2 months in Chicago, and returned home worse than when I left. My leg from upper thigh to ankle is now swollen, rather than just the knee area. I refuse to give up. So, if you hear of any new ideas, please share them!

      • Dear LL,
        I see that you recommend Dr. Mayman at HSS very highly. I have been trying to get a consultation with him for quite a while but I understand he does not accept medicare anymore and it is illegal for him to accept out of pocket payment from someone who has medicare coverage. Would you be able to tell me on what terms you got to him? Were you part of the pilot study with some special arrangement? I would be grateful for any information. Thank you.

      • Dear LL,
        I posted a reply to your recommendation of Dr. Mayman at HSS,but so far I did not hear from you regarding how you were able to get to him as he no longer accepts medicare. Perhaps you prefer communicating wit me privately via e-mail. My address is
        heilbrun5@aol.com. Would very much appreciate hearing from you.
        Thanks.
        AnnHeilbrun

  161. I developed arthrofibrosis after both my knee replacements. Felt like rubber bands closing around my knees. My flexibility went from 115° to 80° in my first replacement. Crippling horrendous pain especially at night. A scope was performed and it was manipulated back to a 115. No pain, no heat developing at night. Then did my 2nd knee replacement. Both knees and were now tightening and my mobility was lessening. Horrible chronic pain especially at night. Then someone recommended the Graston Technique. I go to a physical therapist that specializes in it. It has changed my life. I’ve gotten my mobility back, I can go up and down stairs normally, I have minimal pain and have my life back. If you have the same problem I highly recommend you look into this. It could change your life.

    • Hi Jean,

      Thanks for sharing your story. I am going through similar situation where I developed fibrosis following TKR, it has been over 7 months since my surgery, I have bad pain sitting or standing, my ROM is very limited ( 15 – 75), I do messages constantly, went through many months of TP with no difference. I wanted to learn more about the Graston techniques you have mentioned. Is this for breaking the scar tissues, or just giving them more flexibility to improve ROM, is this technique painful,..etc. Appreciate more details please. I went through manual manipulation surgery, as well as Arthroscopic surgery, in both cases I feel better just for a few days, one week max, then the scare tissues start forming again, and limiting my mobility, so looking for any treatment that does not break the tissues, rather work on making tem more flexible.

      Thanks in advance for yoru help.

      • I saw your question and apologize for taking so long. Graston technique absolutely changed my quality of life. I go to a PT that specializes in it. You need one that has the graston technique tools. I have also learned to do some things at home that help with it. Arthrofibrosis to me felt like rubber bands getting Tighter and Tighter around my knees. My Mobility lessened and lessened. Woke nightly with hot knees. Just kept getting worse. Graston technique at the beginning is painful but it is so uplifting when you get home and feel that your pain is starting to go away and your Mobility is returning. The process basically breaks up your fibrosis that hasn’t grown normally. The therapy feels like little rubber bands snapping inside sure leg. As it goes on the treatments are less painful. I truly looked forward to them because the next day I knew I’d feel better. Google it so you can see how it works with the utensils. Find a physical therapist that specializes in it and get started. Your life will change.

  162. After years of doctors and unsuccessful surgeries and debilitating pain for a right knee contracture (frozen), I just recently was diagnosed with arthrofibrosis. My journey finally led me to Dr. Noyes in Cincinnati Ohio. What an incredible surgeon and authority in this specialty. Unfortunately, my situation is too severe for successful intervention to restore the back of my knee so I could straighten in. However, there is some possibility of an extensive surgery to possibly gain some flexion. The surgery would be opening up my entire front of the knee and removing the scar tissue that has completely encasulized my knee. It would be a long risky surgery with a 50/50 chance of working. I am joining the blog to get some feedback from anyone who has pursued surgery at this severe level. Thank you for listening.

  163. I am turning 65 next month and have had four knee surgeries on my left knee over the course of seven years. The first, 2009, was to replace my left knee. The second, a year late, was an exploratory operation because my knee was sore and my surgeon said I have an infection. When I came our of the anesthesia he told he did not see anything and sewed me up. I under went a series of heavy antibiotics (delivered IV style). After that surgery the original surgeon passed away suddenly and I had no referral to anyone for two years. I was now required to use two canes to walk at this point.

    Fortunately, a doctor friend referred to another surgeon. I saw him and he said that the infected prosthesis needed to be removed and a temporary spacer needs to be put in. Just before this surgery the infection was so bad it erupted through the skin and my doctor said that I might have to have my leg amputated. That did not happened.

    I underwent the surgery with the prosthesis being removed and a spacer installed for one year. My left leg was placed in a brace and that is how I functioned for one year to make sure the infection was gone. I needed my wife’s aid to dress, bathe, go to the toilet, and could not drive or cook. I was now confined to using a walker.

    One year later I underwent the fourth surgery to remove the spacer (which had cracked) and install a new prosthesis. When this was completed I was told there was much scar tissue due to the previous surgeries and that I would have limited motion but at least I still had my leg. Now the walker would have to be permanent. I now have minimal movement, severe pain if I try and flex my knee, a badly swollen thigh above the knee, numb spots on the knee, and it is impossible for me to stand with my left foot flat on the ground. After the surgery my heal was pulled up so that when I stand only the balls under the toes touch the ground. I have had to have orthopedic shoes made for me to try and walk.

    One last item. Due to the fact the my gait was affected by use of canes so long I have had to have my left hip replaced. I am know able to drive, but need help throughout the day with common actions. If there is some way to minimize the arthrofibrosis and provide some flexibility I would jump at the chance. I have given up on a cure and only dream of my once normal life.

  164. Have been dealing with severe scar tissue in ankle joint for two years now. Had one surgery for debridement of the sinus tarsi canal, which left me with even more scar tissue and in even worse condition then before. I have tried chiropractic care, myofascial massage, several rounds of PT and needleing….nothing has helped. Has anyone tried PRP treatments or stem cell treatments for arthrofibrosis? Does anyone know a physician in Atlanta area who deals with arthrofibrosis? Thanks!

  165. i developed arthrofibrosis after surgery for an acl and meniscal tear. I had to have two surgeries, including a lateral release to make my knee somewhat functional. I also developed patella Alta due to the scar tissue pulling my knee cap lower. This was about 15 years ago. I’ve had pain in the joint ever since which I’ve dealt with by icing and nonprescription and prescription pain killers. Over the last few years, the pain has gotten really bad. I can no longer walk very far, and the muscles around my knee have atrophied. Weight bearing exercise on the leg is painful. My question is, would a person like me even be a candidate for knee replacement? I’m 50 years old, and used to be a very active person. I ran, practiced taekwondo (where I tore the acl) and liked to swim. I regularly weight trained to keep my muscles strong. I just doesn’t want a doctor operating on me if I’ll develop scar tissue again. My orthopedic surgeon says that it shouldn’t happen again, but I’m not too sure.

    • I am 49 and just had total knee replacements on both knees at the same time on May 9th, 2017. I now have the arthrofibrosis in my right knee and can not bend it but about 60 degrees. I have had manipulation under ansetisia done twice since the replacements, and still not better. My Ortho Surgeon informed me today he is leaving me be for 3 more months and then will see if I am any better. If not we will discuss my 2 options he says I have. One being, total replacement on right knee all over again and 2 being that I live the way I am at that time.

  166. Hi, I just thought I’d share my story about arthrofibrosis. Mine developed in the knee following a riding accident, in which I had the terrible triad, torn acl, torn lateral meniscus (which healed on its own) partially torn lcl, and a dislocated kneecap. I developed stiffness immediately post injury but I suspect this was due to blood in the joint, I was placed in a knee immobilzer and had surgery for a internal derangement, after which surgeon told me I had a “severe injury” but had several small adhesions the beginning of arthrofibrosis) in the knee which were lysed and there my journey begins… This surgeon noted the acl was held together by just a couple of fibers and did not stitch the stumps together as is common practice. He then basically told me to go to the city for further treatment, he missed the patella dislocation, I found a “sports medicine” doctor who did 2 scopes but basically did nothing, and even lied to me about his findings, my knee had locked into a bent position, I did PT but nothing changed no matter how aggressive they were at PT the knee remained locked. I was young and naive but one day got the brain wave to check my medical records, the surgeon told me he could straighten my knee in the OR, the residents dictating the reports said differently, then this doctor recommended an acl reconstruction, something told me not to do it, why make a stiff knee stiffer, So I went to the library read every sports medicine book I could get my hands on, and learned as much as I could interesting in that no one ever mentioned the term arthrofibrosis to me. Through one of the sports medicine books I found a local doctor who diagnosed me in 5 minutes, planned a surgery, kept me in the hospital in a CPM, ordered very aggressive PT basically starting in the recovery room. He also discovered my kneecap was dislocated and fixed, he kept a super close eye on me and my progress, and we were able to get my knee back to a normal rom for my knee, one year after that surgery he did the acl reconstruction and removed a “huge” amount of scar tissue, and again very aggressive PT. This all happened in the early 1990’s and was a 3 year process with 5 surgeries that was depressing, frustrating, and at times had me questioning whether I was crazy. Fast forward to 2017, and I have pain in the knee again, went back to my doctor who just retired from surgery and discovered 2 meniscal tears, had surgery 6 wks ago, again had a ton of scar tissue but the graft is tight and fine, and again struggling with extension and flexion, PT I am currently seeing is not very aggressive. Doctor just wrote a note telling them to be aggressive. But, my knee help pretty well for 20+ years, Current surgeon is knowledgeable about arthrofibrosis, Basically my point of writing this is to offer hope, don’t take one doctors word at face value, research, read, find the best you can. I went through three years of hell, and had a pretty normal knee that got back to about 85-90% of what it had been. Had I listened to that second doctor who knows where I’d be. I’m sorry to read some of the stories here, but for those whose journey is just beginning fight hard! It is possible to get back to normal and even after my 6th surgery on that knee I have every intention of getting my knee back to where it should be (no pun inteneded). I wish you all the best, and hope for the best outcomes for you.

  167. One other thing I want to say here–if I hear one more professional, doc or PT, or family member that tries to imply or out and out say that this was caused by my not doing something or not doing it “right” or “enough” I think I will throttle them on the spot. I have worked my a$$ off diligently for over a year on PT there and at home. I have undergone five (5) procedures in that year, one was the initial replacement, and fourth was the revision, which replaced that. Others were two Arthroscopies with MUA, and an MUA. Countless hours of PT, CPM,, Dynasplint for extension, Dynasplint for flexion, Game Ready Ice machine ($120/week, not covered). I’ve missed six months of work during this time, and the reduced hours will affect the pension I receive when I have to retire in 15 months (the earliest date I may do so). I’ve endured pain that made three childbirths (one with back labor) look like a walk in the park. I’m still struggling with it, but I work at it every single day. I want my life back.
    So if you are a professional or family member, try not to victim blame or suggest things you have no idea or in case of family, any authority to suggest whatsoever. We’ve got enough to deal with, without having you imply or say straight out that we somehow caused this dreadful complication, as if anyone would. Just don’t. Be supportive. Rant over. And yes, that did make me feel better.

    • Amen to all that you said! My husband has been dealing with this since January, 2015. He has had knee replacement, two arthroscopies with MUAs, dynasplint, CPM, PT (both at facility and at home). He has been very diligent. Was forced back to work on a less than 100 bend and now just being told that he will probably never be medically cured and the State is giving him hard time to collect permanent disability. We are fortunate to have a doctor that does not blame him, but I know that not all are like that. This is a serious condition and needs attention. And, you are right, the rant does make you feel better. Good luck.

      • Is there a chance to claim permanent disability? I ‘ve had 10 knee surgeries since 1981…5 since 2011. I had to be out of work 7 months in 2015. Since then I’m back to work, although had to change my position. However everyday it is difficult for me to get through the day at work. I’m a teacher. Sitting, standing, walking, lying down, are all painful. I keep trying surgery. In addition, PT, acupuncture, Calmare, Graston,Cryotherapy, massage, etc. etc. I’m in as much pain at home as at work. Emotionally it helps to go to work, but some days it’s so difficult to get there. Once I’m there I try not to think about my horrible pain, and permanent disability condition. But once I leave work all my limitations continue. There is another therapy that is the same at Graston. I ‘ve forgotten the name. I went through months of that treatment. Had zero improvement. Went to another PT, he did one session of Graston, and my knee got worse. Felt really bad, and look like I had an infection. Went to emergency room. No infection. Just the Arthrofibrosis issue flaring up from the agreessive Graston tool. Any suggestions accepted. Thx!

    • I have the same problem with people who think they have the solution to get my leg to bend.some saying doing too much while others say not enough.BS,I have been dealing with stiff leg for 11 years still will not bend.I went through numerous procedures and seen different doctors.The main answer from the doctors is nothing can be done. So I hope someday something can be done but as of now nothing.In the end i had two hip replacements and several surgeries and procedures done but no luck yet with arthrofibrosis on right knee.So move on and hopefully some day we have a solution.I was 46 years old when it began!!

      • Go see Dr. Henry Finn in Chicago. I just got back. I had 0 degrees of flexion in my right leg and have arthrofibrosis. It too hadn’t bent in 12 years. But, with Dr. Finn’s expertise, I now can bend it just shy of 70 degrees. An extremely complicated surgery and lots of PT, but my quality of life is slowly coming back. We stayed in Chicago for 8 weeks so I could have PT every day. I am now back home in Washington undergoing another 8 weeks of PT. It will be worth in the end. A lot of hard work, but so worth it. He radiates the knee prior to surgery to prevent the cells from growing adhesions so fast. I couldn’t find another surgeon that would work on me.

        Everyone is different. He was able to help me, but you will need to consult with him to see if he can help you too. He sees people from all over the world. He is extremely knowledgeable and so efficient. Check into it. He works out of Weiss Memorial Hospital in Chicago.

        Good Luck! Deanna Baird-Scott

    • Tricia

      I couldn’t have said it better myself. After six surgeries in six months four of which have been huge open procedures, I’m left with huge amounts of pain due to the arthrofibrosis and a very minimal range of motion even after the most recent surgery included a major cutting into my quad muscles to gain A little extra movement. I believe my surgeon is a great surgeon or I wouldn’t have allowed him to do all of the surgeries but I know there are many people out there that question how hard we have worked and how much pain we are in and have no idea and no right to question that if they haven’t experienced this condition firsthand. I have had shoulder surgeries in the past and part of my lung removed which required cutting through all of my ribs etc. and I consider myself to have a pretty good pain tolerance so therefore when I say this is off the charts at times, I absolutely mean it and expect my surgeon and other professionals etc. to understand and believe me. When you feel like that doesn’t occur at times, that Just adds insult to injury and it’s so difficult to even take one day at a time with this condition when you are only 48 years old, great condition, have always stayed in shape and did everything and anything they asked for the surgeries including hundreds and hundreds of hours of physical therapy, done exercises on a regular basis, CPM machine etc. I spent two weeks out of the last month in the hospital and several weeks altogether but have never ever refused to do anything they’ve asked or required and quite the opposite have worked my butt off to get better and will continue to do so but it’s so difficult just to keep from being depressed etc. in addition to having this horrible disease and incredible pain. I can’t even get clear-cut answers out of my doctor as to what the future holds or next step is except I really believe I need a much better degree of pain management as it’s almost intolerable at times even with the medication they provide. I just don’t believe that the nurses or maybe even the surgeon themselves realize how painful arthrofibrosis and all of these things are since they say I’m the most difficult patient they’ve ever had and don’t deal with Arthur fibrosis very often. I even hear these things from physical therapy etc. from physical therapist that I’ve been doing the job 25 years that don’t even know what this disease is all about. Some of them have never even heard of that yet they believe that you should be able to push your knee past thos I even hear these things from physical therapy etc. from physical therapist that I’ve been doing the job 25 years that don’t even know what this disease is all about. Some of them have never even heard of that yet they believe that you should be able to do all of the exercises and improved range of motion greatly. It’s almost incredible to me to think that those people wouldn’t know anything about this horrible condition. I think they are so used to normal surgeries that they can’t wrap their brain around the fact that this could be so painful. I limp when I walk now, I compensate with my other knee that is starting to bother me, my lower back hurts as well, and I think it’s only going to get worse. It scares the crap out of me to think that my right knee may need work or that my back is going to be affected etc. You mentioned missing work and I have missed the last month and probably a few months out of the last six months. I’m very fortunate to have a job that I’m in the office the majority of the time so that I can do my work from home by email etc. but that won’t last forever obviously. I also feel like my surgeon is probably ready to ditch me at a certain time as I’ve already seen the attitude in the office surrounding him and the people that really make the decisions about writing pain medication etc. changing gradually. Even though I’ve spent tens of thousands of dollars on these surgeries and do everything that’s asked, it just feels as though I am becoming that problem patient that they could do without and that is the worst feeling in the world as most of you know the deal with this condition. I believe first and foremost in order to keep from being totally depressed and keep some optimistic thoughts, you have to have a surgeon and their team that are totally on your side and believing you do you have incredible amounts of pain and if they aren’t the ones that can assist you in reducing that pain, then they need to send you some place that specializes in it for pain management. I can’t seem to get that through to them and I’m scared to death that I will just be cast away eventually here once there are no more surgeries on the horizon. I don’t know how to describe it but I know most of the readers on here will understand that first and foremost we want our surgeons and other doctors and nurses to absolutely believe us when we say we are in pain that is the most unbelievable unbearable that we have ever experienced in our lives and need their support and assistance probably more than we even need medications. This is the biggest challenge of my life for sure. We all know it’s a living hell. I apologize for the long rant as well but the last thing we need is for others to question our dedication and commitment to working for just a little less pain, better motion, and a little relief from this hell.

      I’ve read so many stories on here of people in such incredible pain like I am and I just want to say that I wish you all the best and hope that your pain and situations get better with time. I really really pray to God that there are more advancements in this area in the future to help not only us but others that will experience the same nightmare. Others have always said and I agree, that I am one of the most optimistic positive people yet I struggle daily to maintain any optimism that this will get better yet I know I have to keep working hard to try to get another degree of motion and heal. I can’t imagine living in this kind of pain forever and you have to struggle to keep your mind from going to some very dark places. I’m sure anyone that has this condition can relate to exactly what I’m saying. Once again I apologize for the length of this but felt like it was somewhat therapeutic to even respond because you’re post was exactly what I was thinking today and just felt like I needed to agree with you.

      I’m going to continue on one day at a time and try to improve the situation but at times I really wonder how it will all turn out or how I’m going to manage the pain and all that goes with it for the rest of my life. It’s so difficult to even go day today, hour to hour, minute to minute so it’s very difficult to understand how that will all work out but I pray to God it does as this is just the worst nightmare of my life as it is for many on here.

      I wish you all the best as I do everyone else and hope your pain gets better and injury improves. God bless and I appreciate your post as I do everyone else’s!

      • Cameron no one and I mean no one besides the souls that have to deal with this can grasp the diverse dimensions we visit. from pain to depression to the nightmare that it is. you have captured everything that is wrong and then the deer in the head lights stare we receive when we try to explain it. I am off the meds so that I can concentrate at work and of course I am functioning at a level of pain that is incredible. No boo hoo’s I just gotta make it thru life I am 57, kid in college, retirement? After two years the mind game that plays out just to manage the day…wow you get it. This brings no comfort but you are not alone. .

        • Mike

          First, thank you because when I wrote that I WAS SO UPSET, hurting, frustrated, scared, mad, and every other adjective to describe this horrible nightmare that ONLY you guys would and will understand ( so basically what I’m feeling right now as well LOL ) and that I still feel today BUT am trying to manage a little better than I did that night I wrote my original post!!! Hahha.

          If it weren’t so painful and crazy it’s almost not beleiveable and since I’ve always been such positive person, I can almost even make it laughable since my post was borderline CRAZY that night and I even thought “oh my gosh I shouldn’t have written this and how do I get it deleted?!” Haha. So thanks for at least understanding my and OUR frustration as it’s like therapy and we all know dealing with this disease and situations it’s managing the depression, darkness, and all of the really horrible times even more than it is trying to figure out the mechanical dysfunction of the knee! I’m just so glad I have an outlet to express it where my “friends” understand it. I’m so thankful for this site and all of you!! I have learned so much from others and continue to hope!

          I did want to update and share with others the fact that I haven’t really lost any more motion and I’m so excited that I am actually going to see Dr. LaPrade at Steadman Hawkins clinic in Vail Colorado In two weeks and I think he’s one of the best surgeons in the country for this particular disease. I feel very fortunate that I was able to get in to see him. I am knowledgeable enough about this disease now that I don’t believe he can probably do anything to help the situation but at least I will have some closure and maybe a plan to keep the other knee, my hips, lower back etc. and good enough shape to avoid any procedures with them. As we all know, the knee starts to affect the rest of the body quickly!! So my best advice is to be proactive in those areas with chiropractic care, massage therapy, physical therapy, and just plain hard work on her own in order to avoid any other issues. The pain that sometimes is almost unbearable as well so you need to find a really good solid pain management doctor that understands and believes you! I think the key is on the part of believes you.

          In addition to going to get to see the new orthopedic surgeon, I also located a fabulous pain management doctor that really seems to believe and understand the mechanical issues of the knee that cause pain. He is actually the first one that I actually looked at my knee. He diagnosed it with chronic regional pain syndrome as well so I think many of you probably have that in addition to arthrofibrosis. He is it least actually trying to find ways to better manage the pain without just medication. We tried the new DRG implant for a week but I didn’t feel like it was providing enough relief to have it permanently implanted yet. But, it may provide relief to many others in the future. We have tried the common nerve blocks and injections but obviously the mechanical parts and problems cause many nerve and pain issues. Tuesday we are trying some ketamine infusion and I know it probably won’t help much for the pain but the research shows it may help with mood, depression, other things that the pain obviously contributes to. It’s very expensive but if I provide some relief or even placebo effect, I’m going to try. Anyway, it’s at least nice to see that a doctor believes me/us and then actually feels like a partner in the process to reduce the pain. Anyway, I apologize for the rambling but I appreciate your response and I’m glad to see that it wasn’t way too much as I cringed once I sent and reread it! Hahah. This nightmare sometimes causes those types of reactions I guess.

          Best of luck to all of you and thanks again mike!! I’ll keep you guys posted on my journey and look forward to reading about some more successes on here!!

        • Mike,

          I forgot to and must reiterate what Rick said that I CANT believe you do this without meds!!! Kudos to you my friend as I’ve tried and done it at times BUT I can’t imagine doing it totally without for long term BUT I think it further reinforces how strong people are that deal with this disease! That point alone and this website totally motivate me to continue every minute, hour, and day when sometimes it just feels like you can’t go on any further. It’s like, what’s the other option? There is no option other than to move forward right? My flexion doesn’t seem to be losing much thank goodness but my extension is getting tougher and tougher to maintain so I feel for you as well! I remember my Surgeon saying to me that I had to maintain the extension and I always thought the flexion was the most important but I know they are both important but I just really remembered him emphasizing extension. Anyway, I just wanted to applaud you once again on the fact that you do this without medication! Keep fighting and try to stay positive as I am hopeful that there will be more advancements in the way of pain management or at least understanding etc. for this disease in order to find some answers in the future!!! They have to do more research and education in this area!! Stay strong and god bless!

      • Cameron, you nailed it! Everything!! This is the toughest thing I’ve had to deal with in my life and I’ve been dealing with AF after a TKR for 10 years. I’ve had multiple surgeries to take out the scar tissue (open and scope) and MUA’s, but it just comes back even worse than before. I’ll be 50 very soon and I really don’t know what to do anymore. I guess all we can do is live one day at a time, like you said, but those days are getting tougher!!

        Mike, I don’t know how you do it with no meds. That would make it even tougher for sure!! I feel for you!!

        Hang in there everybody!! We’re a small group, but we’re a strong group!!!

        Rick

        • Rick

          Thank you for the nice comments as I responded to Mike and told him that I was afraid to come back and read any responses to my ranting that night! LOL. I’m just glad to know that many others understand that level of pain, frustration, etc. A lot of times you feel alone and to be able to turn to this website and know that you aren’t is very comforting in and of itself and HELPS me stay positive to work hard in order to protect my hips, good knee, and rest of the body that suffers because of this one badly.

          Like I told Mike, just being able to have an appointment with a premier Surgeon out at Steadman Hawkins in two weeks and having a pain management doctor that is on board and a partner, helps so much! When you feel like you are proactive in this it does help to some degree at least for me. You still have the day-to-day struggles but at least something to work toward.

          Anyway, like you, I couldn’t believe that someone can do it without medication! That is so strong. I know the struggles of medication and it’s side The facts versus dealing with the pain bite self and they’re both problematic. Anyway kudos to him and others that can do that but at this point I’m just not one of them LOL!

          Once again good luck and stay strong to you and all the others that suffer from this disease! I’ll keep you posted on my situation and I hope you and others get some relief in the future. 🙂

          • It is becoming harder to ignore the pain. As my body reacts to the inefficiencies of the damaged leg other areas become inflamed. My hips for instance the right socket is telling me the gait is off don’t do that. my left foot underneath has become bunched up were the toes start as if I am walking on a big stone. Walking still doing that. I am an engineer by trade. I average 4,000 to 6,000 steps a day on concrete at work 5 days a week. Each one accounted for each one anticipated. I fell October 3 my foot only clears the ground by a few inches as I walk. Got it caught on something on my face I went. I have to push thru it my family depends on me. If only the scar tissue had not invaded my thigh. Move forward never go back…mike

    • Thanks for all the supportive responses. Cameron, you really nailed it. Luckily for me, after the first 3 procedures, when I had a hooked leg with terrible lack of flexion, I researched and found Dr. David Mayman at Hospital for Special Surgery. Also, he recommended, and I highly agree–with going to Hospital for Special Surgery for the PT in such a case. These people are top-notch, and mostly deal with difficult cases like ours. They have much more in their bag of tricks than the standard ROM exercises. They work as a team with Dr. Mayman, and even though I am still struggling against the scar tissue, no one is giving up on my. My team is there, by phone, email and in person. I am no longer in the excruciating pain I was experiencing last year this time. Since the replacement was replaced, I am dealing with stiffness, tightness and swelling, but nothing like the constant and overwhelming pain.

      I also have had water therapy, and once I had that–I joined my local YMCA and go 3-4 times per week and do a series of exercises in the water 10 reps of each. It helps a great deal.

      I refuse to give up. Dr. Mayman’s PA told me I am already a success story based on the condition I came to them in, and I know it’s true. My kids were so amazed that right after surgery I could stand up straight and walk that they were snapchatting little videos of me doing it!

      There is hope. Never give up. Don’t accept lackluster or wishy washy PT. You NEED someone who really knows about arthrofibrosis.

      • Thank you Patricia! Like I told Rick and Mike, I cringed at even coming back to read responses to my ranting at night but I’m glad you guys didn’t totally think it was crazy. LOL.

        This website provides a great outlet for learning, sharing, and what I consider some of the best basic therapy from others that have experienced this nightmare firsthand!!

        I am excited to go see Dr. LaPrade at Steadman Hawkins if for nothing else, maybe some closure or a plan for the future. Also like I said to Rick and Mike I found a good caring and understanding pay management doctor that is working with me to explore other options as we all know as a group they are very slim especially with the chronic regional pain syndrome as well. I tried the new DRG stimulation where they temporarily implant electrodes in your back and use gentle Stimulation of that nerve canal at L2 and L3 in the vertebrae just like they do nerve blocks but it didn’t seem to be that effective for my pain. Hopefully that’s the new future for others though. Tomorrow I am going to try ketamine infusion in a series of six to see if that will help with the pain but research has shown that it is at least hopefully effective with mood, depression, etc.

        I will keep you guys posted on my journey as we all know it is a long and arduous and please let me know how you guys are doing as well. 🙂

  168. I have had two total knee replacements on my right knee, four manipulations and over six months of physical therapy and to this date, I have 0 degrees of flexion from arthrofibrosis. I am currently in Chicago preparing to have surgery on April 11, 2017 by Dr. Henry Finn. He designed a prosthetic called the Finn Knee that he will be using to replace my current prosthetic. What is different-I will undergo radiation treatment to help prevent scar tissue from growing so prolificly in order for me to actually make headway in Physical Therapy and the success rate of this particular prosthetic. Read the following article:

    Does anyone have a Flexinator that they are no longer using? I would like to buy it from you ASAP. Please let me know at dbairdscott@gmail.com.

    1) Finn Knee System Recognized as Notable Orthopedic Innovation
    Published on November 24, 2008
    The Finn Knee System, an orthopedic prosthesis that debuted in 1991 for limb salvage and difficult knee surgeries, was recently acknowledged by the American Academy of Orthopaedic Surgeons (AAOS), Rosemont, Ill, as one of the more notable orthopedic innovations of the 1990s.

    Henry Finn, MD, chief of orthopedic surgery at Weiss Memorial Hospital, Chicago, medical director of the University of Chicago Bone and Joint Replacement Center at Weiss, and professor of surgery at University of Chicago, designed the implant.

    The system is highlighted in the October issue of AAOS Now, which chronicles orthopedic achievement in the 1990s—a decade marked by rapidly advancing technology. The record is part of the AAOS’ 75th Anniversary Celebration, which looks at more than 1,500 events in the 75-year history of orthopedics.

    According to the maker of the implant, Biomet Inc, more than 12,000 patients in the United States have benefited from the System and what it evolved into in 2000—the OSS Orthopaedic Salvage System featuring the Finn Knee, a complete salvage revision/oncology limb-reconstructive system.

    Finn says it treats people with extensive bone and ligament damage as a result of deformity, trauma, revision, infection, or cancer, which conventional knee replacement would not be able to accomplish.

    The Finn Knee was also recognized as one of the most significant advancements in the field of orthopedics in the last century in the millennium edition of Orthopedics Today (January 2000).

    Finn has helped invent other orthopedic prostheses: the Balance Hip, a cementless hip replacement that enables patients immediate weight-bearing on the hip; the Vanguard SSK Knee, a super-stabilized knee used in complicated and revisional knee surgeries; the Balance Microplasty Hip, used in minimally invasive surgery; and the OSS Salvage Cage, used for revisions in cases of catastrophic failure of hip-replacement sockets..

    • Deanna,

      I hope your surgery goes well today and you have excellent results! I’d be interested in hearing how the radiation therapy goes, as my doc says I would be a perfect candidate for it.

      Best wishes,

      Julie Muniz
      Waller, TX

    • These knee surgeons have turned out to be cold blooded gangsters. It is not good to keep cutting the human body

    • Theresa

      I just tried the DRG (. Dorsal Root ganglia) stimulator that Saint Jude’s provides to the pain management doctor to implant. I did the trial period of one week just a couple weeks ago with the temporary implant. So what they did was they went in like they would with an epidural injection with a hollow tube needle and inserted two leads in your back. One of the leads goes to the L3 that covers the knee and the L2 that it’s just above the knee. You then control the power and stimulation with a handheld transmitter or you can turn it up or down. You try that for three days to seven days and if you see over 50% reduction in pain then you can elect to have it permanently implanted with a small battery and the wires completely encapsulated in your body. You then control it with the same transmitter. They said they were making the batteries and transponder smaller but right now they were still a little larger than what I like. I also began to notice some lower back sciatica pain. I believe the gentle stimulation was overstimulating or exacerbating the muscles above that in my sciatic area and those nerves as well. The sales person now with St. Jude’s were very persistent and I Felt a little pressured and that the risks outweighed the particular rewards at the time for me to have it permanently implanted so I elected to have it removed and my lower back pain went away. They said they could adjust that and I’m sure when it was permanently done it would’ve been better. I did some research on it and was just not quite confident that it was exactly what I needed or wanted at this time until I see the knee surgeon in Colorado. However, I also have chronic regional pain syndrome in my knee that probably contributes to more knee pain and complexity so others may actually benefit more from this procedure than what I did. I just think it’s still very new and wanted to see if the knee surgeon before I committed to anything. It sounds like from the research though the DRG stimulator is much better than prior stimulators in the past or at least the studies have indicated some of those things.

      Anyway, I hope this helps you with your research and your decision. My pain management doctor and anesthesiologist was wonderful about removing it and completely understood! He’s going to continue to seek out other treatments that will assist in reducing the pain so I hope you get there as well but having a great pain management doctor will really aid in the process. Good luck!!

  169. I have had three scopes and two knee replacements on my right knee. First a partial, then a TKR. Unfortunately, I have been diagnosed with AF and have had the scarring cut out twice over the last year and a half. This might sound like a very stupid question but here goes. My left knee recently had a scope done on it after I contracted a major infection in the knee capsule, after getting a cortisone shot in that knee. Emergency surgery was performed the night it was discovered and the knee was found to be pretty badly worn out and seems the only answer would be to have another TKR, in my left knee. Is it an automatic that I will get AF in that knee, too? Does anyone know or have gone thru this. Right at the moment I can only climb stairs using my left leg to climb and then pull the right leg up to the same step. Same going down. At least I have a bit of strength in my left leg but don’t have the strength needed for very much in my right and if the AF comes in my left knee I would be useless. Wondering whether I should just grin and bear the tremendous pain in my left knee or chance a TKR where I’ll probably have no strength and tremendous pain to boot. Plus the possibility of being nearly a total cripple. Ain’t AF great!!

    • my vote if and when my left knee were causing me issues would be to grin and bear it. I can not imagine going thru on the left what I an currently and always will on my right. they are only guessing to say otherwise. read my story here I am currently down to 30 deg extension. I hate how I feel.
      Mike Stanton

    • I had TKR on my left knee Dec 2013 and have had arthrofibrosis ever since. 1st manipulation under anesthesia was performed without improvement. The post open pain from the MUA was incredibly bad. Since then I have had 2 additional surgeries to remove the scar tissue, the most recent Dec 2015, followed by aggressive physical therapy each time but each time the AF returned worse than before. However, I had TKR on my right knee September 2014 with decent success and virtually no AF. My physical therapist said she had seen that, 1 knee bad 1 knee good, many times before. This is just my story. If I had to do it again I would have done more to avoid surgery at all. I am in constant pain from the AF and unable to walk or stand except for brief periods of time. I’ve read about promising work with stem cells to avoid surgery. I would recommend trying anything except surgery.

    • I recently had bothe my knees replaced at the same time. I only ended up with AF in one of them. The other knee is doing great.

    • worst thing in the world, I”VE been dealing with this nightmare for OVER SIX YEARS and NO RELIEF in sight.three manipulations,two scopes and one two hour cleanup surgery.this was done in HSS WHICH IS ONE OF BEST HOSPITALS AROUND.Even drove 11 hours to CINCINNATI to see WORLD RENOWNED DR. NOISE and he would not touch my KNEE. DON”T DO IT

    • I believe as someone also with AF that you will get it in the other knee too. I am currently recuperating after my 4th surgeryto try and fix this with a left tkr, but even after vigorous physio the barstard is back again! Sorry about the bad word but I feel better swearing about the damn thing. There must be something or someone with an answer for af sufferers cos itsa hideous condition.

  170. I would like to share my experience with arthrofibrosis. Reconstruction surgery in 1978 due to a large osteochondritris desiccant defect of the lateral femoral condyle. Back yard football was the culprit. Knee grew worst over the years. On March 3, 2014 TKR. Three weeks later my ROM was 65 flexion and 5 extension. Three weeks later my knee became stiffer with 60 flexion and 20 extension. A manipulation was performed with full extensions and flexion being obtained. Two weeks after manipulation my ROM was 85 flexion and 20 extension. All this time I have been to physical therapy five days a week. Knee is swelling with plenty of pain. Knee arthroplasty, open capsular release/adhesions and a poly exchange on May 20, 2014 with 3 extension and 125 flexion. Started back physical therapy. Two weeks later, 7 degrees extension and 110 flexion. Two weeks later; 3 of extension and 96 flexion. Went back to work in July using a cane. Walking was painful. My September checkup indicated my ROM was 8-12 extension and 90-95 flexion. By October 2014, I have been to 107 physical therapy visits and have taken 120 prednisone pills. My last visit to the Andrews Sports Medicine and Orthopaedic Center was in January 2015 indicated a ROM of 10 extension and 85 flexion. I became sick and tired of walking with a limp. I called several orthopedic clinics throughout the south trying to find a surgeon with scar tissue experience with no avail. In August 2016, My wife found this website. She read about this disease and cried. I called the Hughston Clinic in Columbus, Georgia and asked for the director of surgery. The administrative clerk said that their was no such director, so I told her my story and that I’m begging for help to walk. She said she would go ask the doctors. She did and called me back saying that I was in luck because the doctors said to see the doctor that fixed Humpty Dumpty. I said thats great, but who is he? She said Dr. Fred Flandry. Two weeks later we went to see him. I asked him if he could help me and he said he could and that it would require severe physical therapy. I was mentally prepared. On the way home, my wife was distraught because she didn’t want to see me in another six months of pain. A few weeks later she went back to this website and found that Dr. Fred Flandry was listed. She began to cry tears of joy. I also joined in. January 4, 2016 I underwent another scar tissue removal, open knee 41 stitches! Forty-three physical therapy visits and ninety at-home self exercising with an hour each morning and two hours every evening, my knee was much much better! I ended up with a 8 extension and 115 flexion. Summary: After two scar tissue full open knee surgeries, 150 physical therapy visits and 90 two-a-day home exercises, I still have to do my exercises three times a week for 30 minutes each to keep my back from hurting. I hope this encourages you. 10/9/2016.

    • short version…total right knee replacement july 2015. did not work out to well. back to hospital within the first week home. mau then sent to rehabilitation center. entered there with 25 degs. bend. left with 30.
      another surgery in august to repair and replace parts. back to hospital after the second day home for removal of a large hematoma in thigh. another mau in august. came out at 90 degs. regressed to 30. leg is becoming harder to bend and the pain throughout thigh and knee are unbearable. fired surgeon in September. new surgeon in October. upon looking at my x-rays determines my femur was notched almost one inch above the appliance. states will have to replace the original parts and place a device up into my femur to bridge the open gap. states it is a fracture point. due to the amount of activity in the past several months tells me to come back in January 2016 to allow things to settle down. at this point he also is concerned with the amount of AF that is starting to take over my thigh up to and including the tourniquet line. the AF is not only on the surface it has infused inside the muscle. extremely painful ordeal. Christmas eve I fell due to my inability to walk without crutches and heard an audible crack.
      pain scale now at 10 passed out. was taken to emergency room they found that my patella had cracked in half. surgery January 4th 2016 full cast to groin for three months. after the removal of the cast 0 deg bend. AF has turned my thigh to steel. more pt after several months able to reach 30 degs. nobody has an answer how to fix me. went to Chicago to discuss with Dr. Henry Finn. he suggests replacing the appliance with a hinged knee of his design. however nothing can be done with the amount of AF in my leg. passed on the replacement. as of today I am stuck at 30 degs. the AF in my thigh fells like a charlie horse and if you remember as kids someone giving you a snake bite on your wrist, well mix those two sensations together at a pain scale of about 4 to 5 24/7 that’s me. I have learned a great deal about pain and suffering and the helplessness this disease brings forth. no one knows what to do with me. at 57 its a life changer. no one understands. they see me if you will “walking” and think all is well. considering having the leg removed. I could not make this story up nor would I. if you are experiencing less than me be grateful. I feel compassion for anyone who has more. just thought you should know. mike

      • Michael: I sympathize with you and I am sorry. Read about my experience “Deanna Baird-Scott” below. In short, I too have 0 degrees of flexion in my right knee after two TKR’s and more physical therapy sessions than any one person can fathom. I live in excruciating pain 24/7’s. The contorted way of getting up as you know does havoc to your hips and back. So, we not only have severe pain daily, but I and I can imagine you too have bursitus in our hips due to having a chronic lump, arthritis in my back and I have fallen more times than I can count. That is only the tip of the iceberg of problems encountered when we have no flexion.

        I wanted to tell you to maybe re-consider your decision about having a new knee put in. I too went to Chicago to consult with Dr. Finn. I am having surgery in April to totally replace the prosthetic with his designed prosthetic. He has ordered radiation pre and post surgery to help prevent the rapid growth of adhesions and aggressive physical therapy for approximately 8 weeks. Will most likely have to have more PT when I return to Washington state. I just refuse at the age of 58 to give up the chance of a quality life again. Of course, maybe there are some specifics that I am not aware of that makes us unique in our circumstances so the outcomes may be different causing you to think you have no further path forward. If that is the case, I am truly sorry.

        • It is March 27, 2017, almost March 28th and I am meeting with the radiation oncologist tomorrow for my radiation markings prior to my lysis and TKR of my right knee by Dr. Henry Finn. My surgery is scheduled for April 11th. As I have mentioned in past posts, I have no flexion at all in my right knee and have suffered with chronic severe pain for ten years. I am sure hoping this will do the trick or I live with this the rest of my life. I am 59 years old. So please keep me in your thoughts. Hope you are all finding solutions to your arthrofibrosis as well. Sincerely, Deanna Baird-Scott

            • Deanna,
              Please keep me/us posted after your april surgery. You are probably the only person that understands what I go thru every day. I will be thinking of you and your struggles. Michael

      • Hi Michael,

        I just found this site yesterday…and even though I am reading horror stories about your circumstances, it does make me feel better knowing there are others out there like me. I haven’t met anyone who has had the issues I have had with my replacement/scar tissue, so I feel like I’ve come to the right place now…with people who truly understand the struggle. I had my replacement 2 1/2 years ago and have had nothing but trouble…like you…a complete life changer. I’ve had an MUA at 9 weeks post op, and a scope to remove scar tissue at 16 months post op, 17 months of PT and I’m worse now that I was at the beginning. Constant pain, swelling, cramping, little sleep, not able to do many of the things I could do before…I’m only 57, but sometimes feel much older and I do worry what the future holds if I’m already in this shape at this young age. Will I even be able to walk at all when I’m older?? Anyway, I just wanted to say hello to a fellow replacement club member and I hope you can find an answer to your knee issues! If you do…please let me know what it is!! Hang in there!!

        Julie Muniz
        Waller, TX

        • Julie,
          I don’t visit here often so welcome to the club! There are others like you and others that wish they were you. Some one is often not as lucky to be like me and suffers beyond it.
          Cant imagine. At 57 I have lost almost all activities I have had the pleasure of doing all my life. Sadly in the quite moments of the night this nightmare haunts me and sorrow sets in.
          I wish Deanna would chime back in so I could understand her ordeal as of late.
          In her own time perhaps I am not running any where soon….lol
          Michael

  171. Hi Everyone,

    I am a 19 year old girl and I tore my ACL almost two years ago, I have had five surgeries on my knee and a treatment of radiation. I have arthrofibrosis and I can’t bend my leg past 85 degrees. I am also at a negative 10 degrees in extension. I live in Michigan but I am willing to travel anywhere to try and find a surgeon who can help me. My surgeon is extremely experienced and did a great job with my repair but has never seen a patient with arthrofibrosis and he has no idea what else to do. I can’t stand living like this anymore. I use to be a very active athlete and now I can’t run or do any of the things I used to do anymore. I am in constant pain and I wake up every morning not knowing if I will be able to get out of bed because of how bad my hips hurt. The way I walk has already put a huge toll on them. I am really hoping to find some answers. Please help me if you can. Thank you.