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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.

Arthrofibrosis can be caused by the initial injury to the joint or from surgical complications. Infections and bleeding into the joint are believed to be major causes or contributing factors 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,  the excess scar tissue limits range of motion (“ROM”) and functionality. The condition can be quite painful and debilitating.

The treatment of Arthrofibrosis requires very specialized care and there are only a handful of orthopedic surgeons in the world who have a significant amount of experience treating this condition.

The Arthrofibrosis Foundation website was created to provide a resource of information, a community of support, and financial assistance to help patients receive the costly care they need to overcome the challenges related to this condition.

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157 Responses to "Home"

  • craig quemard
    August 23, 2014 - 12:59 am Reply

    hi

    i have expected early Arthrofibrosis with full range of motion which is progressively getting worse, i was wondering what sort of exercises i should be doing if any to maintain the muscles in my leg?

  • Georgina
    July 25, 2014 - 9:04 pm Reply

    I am a 58 female, who started having terrible knee pain when I was 24. I had a lateral release ( in Germany) when I was 27 which did help for a little while. I then moved to the US in my early 30s and after returned knee pain went to an old Doctor who “cleaned it out” and said I would have to have that done every 2 years. I was so despondent at that point. My husband by then got a new job and new insurance and I picked a new Ortho doctor purely by his name, lol I was living in Salt Lake City UT, but I am British, and the name Dr Bruce (Scottish) Evans (Welsh), took my fancy so that is where I went. Dr. Evans was my age and for anyone in that area he was my doctor for 20 years until I moved to WA. He works at Salt Lake Orthopedic and there phone number is 801-262-8486. I put that there because I would recommend him to anyone. The fact that the condition is incurable did not give him the attitude that we were going to sit around and do nothing. He was very proactive. We implanted sea coral to help pull out the patella to help stop it from rubbing the groove out, he tried radio therapy, oh the list goes on and on. My left knee including the German surgery and the old doc’s clean out now stands at 35 surgeries. I have no range of motion and pain is constant. I am not giving up. Above the knee amputation has been recommended for my next step. I have had 2 regular knee replacements and now I have an unusual hinged prosthesis in. Everyone has there special doctor, but Dr. Evans bless him has taken my file all over the country to medical conventions and even to England (as I said I’m British) so see if they had any ideas for him, but please call his office or if you are close make an appointment and go and see him. He does have several patients that are out of state. I am so glad I have found this site.

  • Tamera Lee Lane
    June 21, 2014 - 4:00 pm Reply

    Are any of the specialists working with the VA? I have had two TKA done on my right knee with a total of five surgeries on my right knee. I initially tore cartilege off both femoral condyles and sheared the lateral meniscus in 2001 while on active duty. Ortho sutured the meniscus and tried microfracturing to repair the areas where the bone was exposed. I continued on active duty and finished my 20+ years as an ER/Trauma RN in the Navy, but noticed a quickening decline in my knee and increased swelling and pain with decrease flexion over time limiting my ability to perform tasks in the ER. In 2011 when i could barely walk, i had a scope done and the lateral meniscus was shredded and i was completely bone on bone in all three compartments of my knee. I suffered for six more months before i accepted my knee would never heal and had a total knee replacement. My knee never healed completely and i broke out in fevers and rashes on day three. Over the next ten months, i continued to experience full body rashes, very painful, swollen, and hot to touch right knee and extremely sensitive to the touch. At six weeks post-op i began questioning if I was allergic to my knee and was blown off by the PA and my surgeon. At 8 months post-op and no improvement, my primary had me tested and found out I was highly allergic to nickle. My knee was exposed to nickle for ten months with chronic inflmmation as well as full body systemic rashes from the nickle before a nickle free implant replaced the first one (titanium and ionized Zurconium (?)/ ceramic-like implant). Inspite of massive Physical Therapy, and trying to live a somewhat normal life, at 1 1/2 years post-op, i still have negative 10 degrees of extension and 90 degrees flexion (on a good day). The more active I am the more swelling and numbness of my knee and lower extremity. It is hot to touch, has medial/lateral instability improves slightly with an ACL brace, feels like something catches in the joint (probably scar tissue) and pain ranges from a 4-9 on a daily basis, no more than 4 hours of sleep a night even with narcotics, increases with storms and cold fronts or cold rooms, up to 3+ pitting edema below the swollen knee if I attempt to substitute teach, nursing is OUT of the question. My left knee, both hips, and back now being affected due to leg length discrepency and a antalgic gait on the right. This is a VA disability. Is there ANYBODY out there that can help???? I was a runner, swimmer, biker, hiker, nurse, teacher, and photographer and have had to give it all up. I cant get around a bicycle rotation even with the modified shortest arm on the right side due to tightness and lack of flexion. I have every symptom of arthrofibrosis and have given up on being pain free and getting a normal night sleep without waking up every 1-2 hours from pain. I came across this website and hope and pray someone can and is willing to help.

  • Alicia
    June 18, 2014 - 2:27 am Reply

    Hi.
    I had surgery in January on my right knee to fix patellar maltracking. My doctor did a lateral release and medial plication to get the knee to track straight up and down. Because of an insurance mixup, I didn’t get into PT until about 3 weeks after the surgery. I was going every day for two months and gained a flexion of 15 and extension of 90. I am now going once a week (had to cut down because one of my insurances stopped), am swimming and doing many things I used to, but believe I am suffering from arthrofibrosis. I can now flex to 11 and extend to 107 on my best days, but am incredibly stiff, have frequent popping feelings and get some pain when I move. My gait is off because I can’t straighten fully. My knee will straighten fully with the contraption my PT made, but as soon as it comes off, it bends again.

    So, now I have ten visits left and am wondering if I should get this surgery everyone is talking about or if there are any other options besides surgery that I can try that I haven’t tried yet. I live in Arizona, so if someone knows a doctor here, that would be helpful. My last appointment with my surgeon was a week ago and he told me to do a prone leg stretch three times a day to get it to straighten and come back in two months. I feel that it’s time to see a new doctor. Thoughts anyone?

    • Heidi Armstrong
      June 20, 2014 - 6:45 pm Reply

      Hi Alicia,

      The really good news is you’re catching it very early.

      The question to ask is, “Who is the best person to treat arthrofibrosis?”.

      I recommend seeing Dr. Steven Singleton at The Steadman Clinic. I was a patient of Dr. Steadman’s from October 2011 through his retirement, and Dr. Singleton (who Dr. Steadman transitioned patients to) did my last surgery. He is exceptional. I posted below on March 28, 2014 – 4:34 pm. Read through that post to see why it’s important to see the right surgeon.

      All My Best,
      Heidi Armstrong
      injuredathletestoolbox.com/why-i-understand/

  • Theresa M
    June 1, 2014 - 5:54 pm Reply

    Hi everyone,

    I pray that everyone here find peace, comfort and most of all results. It’s not easy to be in this position I know I am but we don’t have to let it run our lives. So let us all rise above our pain and sufferings and stay strong and keep on believing that one day it will all be over. God bless you all here and let’s keep uplifting each other.

    • Ginger
      June 12, 2014 - 12:14 am Reply

      Ginger H
      Hi Theresa M,

      Thank you for that uplifting message. It brought tears to my eyes. I had Rt knee Jan. 9, 2014. Had a manipulation March 19th. It’s been 6 months and my ROM is only 90. My situation is a Workmen’s compensation case. After the manipulation Workmen’s Compensation only approved 10 PT days. I was totally on my ow for a month. The last day of PT my ROM was 50. I. Rehabbed myself for a month. I increased my ROM to 82. My Surgeon appealed their decision to get more PT. They gave me 9 more days. Hence today I’m at 90. I have literally been fighting for my life. I’m back at work on limited duty. By the end of day my Rt knee is swollen, stiff, and in pain. What is so frustrating is the Surgeon does not know how to deal with a patient with Arthrofibrosis and is not really interested in helping me move forward.

    • Julie
      June 12, 2014 - 4:09 pm Reply

      Hello. I did an ACL patellargraft reconstruction in april with surgery of my meniscs as well. I have just got the diagnose artrofibrosis if my knee, and cannot stretch out my knee. I have heart that there should be a good clinic for this in norway- is that true? And if Thats the case- whats the name? Thank u so much for the help. Julie

  • Nikki
    May 11, 2014 - 11:41 am Reply

    I am looking for a AF specialist in CT. I had ACL and MCL surgery on my left knee in November of 2013. I also had some loose body in my knee removed and some arthritis cleaned out. After the surgery I developed atrophy in my quads. I have full extension but my ROM is only about 115. If my knee is not inflamed I have been able to get to 130 with force from my PT. My OS gave me Naproxen for the inflammation and my knee feels a lot better but the Naproxen hurts my stomach. I have been diligently rehabbing my knee but I get very stiff and my knee is still swollen to the point where I can’t wear jeans. My OS practices at UCONN and says I may need to have surgery to remove the AF. I’m scared that my knee may get worse. Are there any other methods to remove AF? I also keloid easily.

    • Heidi Armstrong
      May 13, 2014 - 3:31 pm Reply

      Hi Nikki,
      I know it’s a long haul for you, but I recommend seeing Dr. Steven Singleton at The Steadman Clinic. I was a patient of Dr. Steadman’s from October 2011 through his retirement, and Dr. Singleton (who Dr. Steadman transitioned patients to) did my last surgery. He is exceptional. I posted below on March 28, 2014 – 4:34 pm. Read through that post to see why it’s important to see the right surgeon.
      All My Best,
      Heidi Armstrong
      injuredathletestoolbox.com/why-i-understand/

    • John
      May 17, 2014 - 11:54 am Reply

      Nikki,

      I am sorry that you are going thru this. I live in SW RI and developed arthrofibrosis after my total knee in 2011 that left me with +10º to 70º. I was young and active. It is a brutal thing beyond words.

      I did a lot of research and I was contemplating a trip to Ohio or Colorado but I ended up going up to Boston to see a revision specialist (who was recommended by a arthrofibrosis expert) and I encourage you to either go there or to the Hospital for Special Surgery in New York where there are a number of doctors who can deal with this. It is the #1 rated orthopedic hospital in the country according to US News and World Report .

      I had a great experience in Boston; I not sure about his expertise with ACL but my surgeon was Wolfgang Fitz at Brigham and Women’s and New England Baptist(where I had my revision last May.). It took a long time to get an appt though. Boston has some highly rated orthopedic programs too.

      I don’t know of any AF specialists in CT. The orthopedic program at St Francis has a good reputation, I got as far as going to a DR Paul Murray, who was highly recommend by others, not sure if he only does replacements but I wasn’t really impressed with this particular doctor or his manner.

      My last piece of advice: get second opinions, get a lot of them.

      Good luck, I thought this was a hopeless journey and it was horrible and full of bad stuff……I was lucky that an identifiable source of my arthrofibrosis stiffness and pain was found (internal rotation of tibial implant) and now a properly aligned joint has given me my life back-3 years gone but I am still here to enjoy life again.

    • Suzy
      May 21, 2014 - 2:20 am Reply

      Does anyone know of a good surgeon to clean out scar tissue in the ankle? I had arthrofibrosis in the knee and went to dr steadman but not sure who to go to for the ankle?

  • Karen Mullis
    April 17, 2014 - 8:36 pm Reply

    I’ve had both of my knees replaced, the left in June 2010 and the right in February 2011. Unfortunately, my surgeon didn’t explain that I have arthrofibrosis or I may have delayed having the right knee replaced so soon. I’ve had other issues that have complicated my situation. I had back surgery in June of 2013 to remove a stenosis that was rubbing my sciatic nerve. This back surgery was successful and I’m actually able to walk a little more than I had been doing. I trying to improve this each week, but I keep having problems with my knees and I have resorted to walking with a walker lately because of a soft tissue injury and pain. I also had an injury to my right knee in May of 2012. I feel if I would have been fully educated on my condition I would have been much more protective of my knees, like I am now. The range of motion for my right knee is about 56 degrees. My left knee may be around 80, probably more like 75. I struggle getting up and down off of furniture, usually having to sit on pillows to assist me in getting up. I can’t comfortably go to concerts or movies because the seating is too low to get up from. Is there a doctor in or near Florida that can consult with me to see if I would be a candidate for surgery to move this scar tissue and place me in agressive physical therapy to regain some of my range of motion to make living more comfortable? Both of my knees hurt constantly, the right being the most painful. I really appreciate any help you can provide.

    Sincerely,
    Karen Mullis

  • Michelle
    April 2, 2014 - 4:28 am Reply

    I am at my wits end. I have this disease and there is nobody who can help. I live in Tennessee and have had one surgery and manipulation. My leg is in a fixed position bent at the knee. For two years now I go in a wheelchair because I cannot walk nor stand for any period of time I am hurting now on my good side because that is where I steady all of my weight. I am just curious can someone help or guide me in the right path? Thank you!

  • Elizaeth Hess
    March 28, 2014 - 2:10 am Reply

    When I was 15 I tore my ACL. I’m now 17 I try to work out about but struggle with pain in my left knee. Its often swollen, constantly irritated and I even struggle with sitting in the car. When I’m standing my right knee is straighter than my left bad knee which is bent. I haven’t gotten back to running and being active like I use to be. I started doing some research and I think I must have scar tissue build up or arthrofibrosis. After my ACL surgery I went to a physical therapist who didn’t really give me the proper attention. I was late getting my knee to straighten out. I finally switched physical therapist when I realized my knee was showing little progress. My new physical therapist must have thought I was not at all diligent with exercises because my knee hardly progressed. I did do my exercises for physical therapy and more. I would love some feed back based on my symptoms because at this point I’m at a loss of what to do. I feel old and excluded out of anything active. Please help with advice to get my health back on track. And does anyone know of in specialist in Seattle ? If

    • Heidi Armstrong
      March 28, 2014 - 4:34 pm Reply

      Hi Elizabeth,
      I’m so, so sorry for your experience. My heart just hurts for you.

      There isn’t a specialist in Seattle, unfortunately. Let me explain.

      In terms of true patience (severely lacking in many so-called arthrofibrosis “experts”), presence, expertise, research, rehab approach, there are two clinics in the world that are head and shoulders above the rest. There is one in the US (the other is in Norway). All of us arthrofibrosis-community folks have to ask the doctor question differently. The question to ask is, **“Who is the best doctor to take my case?”** rather than “Is there a specialist nearby?”

      I tell my clients that seeing the wrong doctor saves one neither time nor money.

      Treating arthrofibrosis is more like art than surgery, and many orthopedic surgeons are break/fix doctors–not artists.

      DO NOT GO TO JUST ANY SURGEON. If your surgeon says he is going to “clean out” your joint, WALK AWAY!!! Clean out most likely equals use of the debrider tool. Read on.

      Many (or maybe most) surgeons (except those who have done a fellowship at The Steadman Clinic) use a debrider tool to remove scar tissue. This tool cuts up and disrupts the extensive vasculature of the scar. If you have a surgical report or photos that mention a debrider or a tourniquet, you’re unlikely to have a good outcome. The bleeding caused by the debrider creates an environment for the scar to grow right back–with a vengeance. Dr. Steadman (and now Dr. Singleton) doesn’t remove the scar; he releases it using a teeny tiny heat probe that cauterizes the scar as he releases it. His goal is zero bleeding during surgery.

      Additionally, the right surgery is a small portion of the big picture. The proper rehab team makes the difference between a positive and negative outcome. On scale, the body of arthrofibrosis reasearch is small, but most of it comes from The Steadman Clinic. They follow researched and tested protocols for rehab. Many other PT clinics have no idea how to properly rehabilitate arthrofibrosis, let alone answer questions when something goes wrong.

      Dr. Steadman recently retired from his surgical practice. He has been working with his replacement, Dr. Steve Singleton, for quite some time. My case was transferred to him, and he did my surgery 4 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, kindness.

      I cannot recommend Dr. Singleton more highly.

      Don’t give up. I’m sending you patience and perseverance.
      Heidi Armstrong
      http://www.injuredathletestoolbox.com

      • Christine King
        April 18, 2014 - 3:12 pm Reply

        There is no disrespect intended in my comment — there is perplexity. For the life of me I do not understand the logic in continuing to make people believe that the only chance they have for a cure (which at this point does not exist) for this horrendous condition is to travel to one or two particular facilities. I have read numerous remarks, diaries and blog entries on several websites about individuals who traveled thousands of miles from home, remortgaged their house, maxed out credit cards, relocated for months at a time to attend “specialized physical therapy” at “world renowned centers” manned by “arthrofibrosis experts”; yet, what I don’t see is anyone (with the exception of 2 or 3 who took it upon themselves to do their own PT at home–no clinics involved) saying they are cured.

        What I do see is their arthrofibrosis recurring just like mine and the need for their “experts” to perform numerous surgeries on them, just like my OS has performed on me, constant careful PT, inflammation control, pain control, etc. Quite frankly, I don’t see any of their outcomes great enough or different enough to perpetuate this misconception. While it is true that most OS’s don’t ever see a case of true arthrofibrosis in their entire career, that does not mean that the only ones capable of treating it are found listed on several websites.

        My OS never did a fellowship at the Steadman Clinic yet he has the brains and skill necessary to perform LOA’s and other procedures on me “properly with a tiny heat probe” so as not to cause massive bleeding into my joint. Is it his fault if my body goes ballistic? NO. Has he done everything humanly possible to give me the best chance at a different outcome? YES. Am I following the so-called AF rehab protocol? YES. Is he caring, compassionate, a good listener, willing to try anything to help me? YES. Did I need to travel thousands of miles from home? NO.

        I think people better get a grip on reality. Are there some horrible orthopedic surgeons out there? You betcha and I saw my share; but this notion that you are doomed if you don’t go flying off to see an “expert” is completely ridiculous. There is no cure for arthrofibrosis There is not one single surgeon who can tell you that you will be cured or that you will only need one surgery or that if you follow a particular PT plan your arthrofibrosis won’t come back.

        Face it folks, our body is what is causing our problem and until someone figures out what triggers arthrofibrosis and how to stop it you can fly wherever the heck you want but I have gotten the same results with my OS as they have with theirs.

        • Theresa
          May 30, 2014 - 3:13 pm Reply

          My name is Theresa.
          Christine you said a mouth full. I had my first knee surgery in jan of 2014 it went well for a while then my orthopedic doctor jump right on it and I had to have a manipulation in march of 2014. Like the first time it went well for a minute now I have to have a knee revision in June 2014. What I’m trying to get at is this. My doctor is so wonderful in his profession kind, caring, understanding etc…… I didn’t have to go all over the states to get help for my problem. We sat down and discuss what to do next. He tried everything under his power to make things right for my left knee. Right now I can’t walk long on that knee it hurts so bad. You are right there’s no cure only comfort and that is what my doctor has given me. We have an understanding towards each other and as I’m sad and hurting over this he is too. So have faith in your doctor especially if he or she is doing all they can do for you and for all patients. God bless you Christine.

  • D.J.
    March 20, 2014 - 2:10 am Reply

    I’m a 29 year old who has had an ACL reconstruction 3 years ago (tore the ACL playing soccer). I’ve had 2 manipulations since then, but still have a lot of scar tissue in the knee joint. My surgeon discharged me saying there isn’t much he can do. But the abnormal gait is causing me back pain, and causing other leg pain. A little frustrated because it’s hard to walk for long periods or even workout. Are there any specialists you could recommend in Toronto and/or Canada?
    Thanks!

    • Heidi Armstrong
      March 20, 2014 - 2:16 pm Reply

      Hi DJ,
      I’m so sorry about your experience. Scroll down just a tad and you’ll see my response to Anna. That will help you.
      Heidi Armstrong
      http://www.injuredathletestoolbox.com

  • Anna
    March 19, 2014 - 5:45 pm Reply

    Is there a specialist to deal with arthrofibrosis in Minnesota.

    • Heidi Armstrong
      March 20, 2014 - 1:14 am Reply

      Anna,
      To directly answer your question–There isn’t one. Read on for more. I’m doing some cutting and pasting from comments below…

      In terms of true patience (severely lacking in most so-called arthrofibrosis “experts”) , presence, expertise, research, rehab approach, there are two clinics in the world that are head and shoulders above the rest. There is one in the US (the other is in Norway). All of us arthrofibrosis-community folks have to ask the doctor question differently. The question to ask is, **“Who is the best doctor to take my case?”** rather than “Is there a specialist nearby?”

      It’s ***very*** important to appreciate not all arthroscopic surgery is the same. Some surgeons are not as careful as others. Myriad tools can be employed by the surgeon through the scope. Arthrofibrosis drastically changes the surgeon’s ability to visualize the joint; it also changes tissue planes. Simply stated: only an experienced (with arthrofibrosis) surgeon should tackle an arthrofibrotic knee.

      Treating arthrofibrosis is more like art than surgery, and most orthopedic surgeons are break/fix doctors–not artists.

      For everyone who is reading: DO NOT GO TO JUST ANY SURGEON. If your surgeon says he is going to “clean out” your joint, WALK AWAY!!! Clean out = use of the debrider tool. Read on.

      Almost all surgeons (except those who have done a fellowship at The Steadman Clinic) use a debrider tool to remove scar tissue. This tool cuts up and disrupts the extensive vasculature of the scar. If you have a surgical report or photos that mention a debrider or a tourniquet, you’re unlikely to have a good outcome. The bleeding caused by the debrider creates an environment for the scar to grow right back–with a vengeance. Dr. Steadman doesn’t remove the scar; he releases it using a teeny tiny heat probe that cauterizes the scar as he releases it. His goal is zero bleeding during surgery.

      Additionally, the right surgery is a small portion of the big picture. The proper rehab team makes the difference between a positive and negative outcome. On scale, the body of arthrofibrosis reasearch is small, but most of it comes from The Steadman Clinic. They follow researched and tested protocols for rehab. Most other PT clinics have no idea how to properly rehabilitate arthrofibrosis, let alone answer questions when something goes wrong.

      Dr. Steadman recently retired from his surgical practice. He has been working with his replacement, Dr. Steve Singleton, for quite some time. My case was transferred to him, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, kindness.

      Everyone, choose very carefully when you put your team together.

      I hope some of that helps you.
      Heidi
      http://www.injuredathletestoolbox.com

  • Patricia Liptrap
    March 18, 2014 - 11:02 pm Reply

    had total knee replacement Feb 5, 2014, now I have been diagnoised with Arthrofibrois also, and from what I am seeing above, this is not good at all. I am doing well I am told at my phyicial therapy today. That I have improved so much from last week. I dread seeing my surgeron tomorrow. I had manipulation 5 weeks after surgery. So I take it this is going to be a battle for the remainder of my life. YUCK, does this not just stink. I was a very active 59 year old woman. I have young grandchildren. THis does not say much for my ability to play with them much in the floor, etc.

    I am going to continue phyicial therapy and what I need to do, in order to be able to drive my self where I need to go and back and forth to work. Hopefully I can soon start driving again, I was up to 9o bend today. Prayers for everyone in this situation.

    • Ina Schafer
      March 19, 2014 - 5:21 am Reply

      Prayers to you as I had TKR, right knee, on 2-4-14 and at 3 weeks was doing awesome and walking without pain and now at 6 weeks have had for the past few weeks pain while standing or walking for 10 minutes or more so icing and sitting more again. I am 63 today and have a new granddaughter to arrive mid April, and I am so afraid I will still be in pain. I think mine is scar tissue related and will probably try to get in with surgeon before my appt on April 7.

    • Noelle
      March 19, 2014 - 5:21 am Reply

      I am 44 had total knee on February 4, 2014. I too suffer from excessive scarring. I had a shoulder surgery two years ago and I needed a scar release. We tried to save my knee last spring with the Oates procedure and I had scar release. I had a hop fracture in 2012 but luckily my scar tissue popped on its own. I was told yesterday he wants to operate again. Manipulation and removal of the scar tissue. It is so frustrating I am the mom of 6 my youngest is 6, I was in the gym 7 days a week and so active. I have been benched for nearly 2 years now! My therapist I love he has been torturing me though!!! I feel for you believe you me!!! He also wants to keep me in the hospital!! Which is fine at least it is quiet!!!! My calve is so sore I can not take anymore. I just can not straighten my leg, last time it was the opposite and I could not bend it!!! Good luck to you!

      • Noelle
        March 22, 2014 - 5:50 am Reply

        Ina, I am being scheduled for surgery. My doctor wanted to do it the day after I saw him but my son was graduating from military program so I could not be laid up last week. Now my doc is going away for 2 weeks so he is so backed up this week he can not get me in until the week before Easter. I could cry as the pain is steadily getting worse. I am limping now on a walker!!! Oh and my calve is killing me!!! God bless your new grand baby that is exciting. Good luck to you. I do not know why this happens to me as I said when I fractured my hip it did not happen!!!!! Good luck I will check back to see how you are doing!!! Maybe February 4 was a bad date!!!

        • Theresa
          May 30, 2014 - 3:45 pm Reply

          Hi Noelle.

          I understand what your going through you are not alone. I have to have surgery a left knee revision and you want to talk about the pain it’s indescribable. Can’t sleep sometimes can’t eat. I’ve lost weight and as I’m typing this I’m in so much pain that even my cane doesn’t give comfort. Sometimes all I can do is cry because at least I can take off the stress that is on me. My orthopedic Surgeon can tell you I’ve cried in his office to please stop the pain. But even through this God is still in control He don’t put no more on you than you can bare. My surgery is in 3 weeks June 17 why so long I have to wait? My doctor is book up next week of nothing but surgeries plus he have to go out of the country for a week then when he gets back he have another full week of surgeries but thank God I’m one of them. So you see we both must have patience they will be back and we will be taking care of. Noelle, this is not your fault nor the doctors fault don’t blame yourself nor your doctor. Have faith and you will come out of this walking on your own with no help at all. God bless you.

    • Heidi Armstrong
      March 19, 2014 - 3:42 pm Reply

      Patricia,
      Dr. Steadman recently retired from his surgical practice. He has been working with his replacement, Dr. Steve Singleton, for quite some time. My case was transferred to him, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, kindness. **However,** he may take on cases Dr. Steadman wouldn’t, including arthrofibrosis post-TKR. I’d recommend calling The Steadman Clinic in Vail, Colorado.
      Heidi
      http://www.injuredathletestoolbox.com

  • Sarah L
    February 26, 2014 - 7:12 am Reply

    Hi, so relieved to find this site! My husband had ACL surgery three months ago and manipulation one month ago but is still stuck at 10/110 degrees. Do you know anyone in the San Francisco Bay Area who could help us?

    • Lori Reed
      February 26, 2014 - 7:21 pm Reply

      Hi All, I wanted to pass on some information I received recently that might help all of you on this site. I had a TKR done in June of 2013 my ROM was about 30, and then a manipulation done in August 2013 at the time my surgeon told me that was all he could do for me. I took his statement literally, and began my search for more help because I was only able to reach 110 degrees a couple of months after manipulation. I was still in quite a bit of pain that I was having my primary care Doc help me with. I got on this site and noticed Dr. Steadman was listed, I was a patient at the clinic in Denver for about 14 years. I made the call and was referred to an arthritis specialist and another Total Joint Surgeon in Denver. To make a long story short the arthritis specialist could not help me because I was a TKR patient and the other Joint Surgeon could not help either, his goal was to find something else wrong with me and he did not explain why he couldn’t help me. I was frustrated, made a call to my original Surgeon and found out how stupid I have been. He meant he could not do anymore for me at that time, he can help me when it has been one year post surgery, they wait because of the risk of infection. He has several Doctors in his practice that are specialist in Arthoscopic Surgery WHICH IS ALL YOU NEED,, there truly are no real specialist in Arthofibrosis at least not that deal with TKR patients. My point is that if you have a clinic in your area that serves all areas of Orthopedics they most likely have a person who is experienced in removing scar tissue through Arthroscopic surgey. I can’t speak for how things are done when you have other surgeries but I would think it would be very similar, remember every time you have surgery you will be at more risk for more scar tissue so be selective. I really hope this helps some of you. and keeps you from potentially wasting alot of time and money. I will post what I find out in June.

      • Heidi Armstrong
        March 19, 2014 - 3:24 pm Reply

        Lori, and those looking for information on choosing a doctor:
        In my personal and professional (research as well as working with clients) experience, seeing the wrong doctor does not save one time and money.

        It’s ***very*** important to appreciate not all arthroscopic surgery is the same. Some surgeons are not as careful as others. Myriad tools can be employed by the surgeon through the scope. Arthrofibrosis drastically changes the surgeon’s ability to visualize the joint; it also changes tissue planes. Simply stated: only an experienced (with arthrofibrosis) surgeon should tackle an arthrofibrotic knee.

        Treating arthrofibrosis is more like art than surgery, and most orthopedic surgeons are break/fix doctors–not artists.

        For everyone who is reading: DO NOT GO TO JUST ANY SURGEON. If your surgeon says he is going to “clean out” your joint, WALK AWAY!!! Clean out = use of the debrider tool. Read on.

        Almost all surgeons (except those who have done a fellowship at The Steadman Clinic) use a debrider tool to remove scar tissue. This tool cuts up and disrupts the extensive vasculature of the scar. If you have a surgical report or photos that mention a debrider or a tourniquet, you’re unlikely to have a good outcome. The bleeding caused by the debrider creates an environment for the scar to grow right back–with a vengeance. Dr. Steadman doesn’t remove the scar; he releases it using a teeny tiny heat probe that cauterizes the scar as he releases it. His goal is zero bleeding during surgery.

        Additionally, the right surgery is a small portion of the big picture. The proper rehab team makes the difference between a positive and negative outcome. On scale, the body of arthrofibrosis reasearch is small, but most of it comes from The Steadman Clinic. They follow researched and tested protocols for rehab. Most other PT clinics have no idea how to properly rehabilitate arthrofibrosis, let alone answer questions when something goes wrong.

        Everyone, choose very carefully when you put your team together.
        Heidi
        http://www.injuredathletestoolbox.com

        • Theresa
          May 30, 2014 - 4:03 pm Reply

          Hi Heidi,

          I agree when you said if they want to clean it out run for your life. I had this doctor (not the one I have now) had it cleaned out I didn’t know no better I was in pain but when he cleaned me out it did not get any better it got worst because he took out all my cartilage the little bit I had. My doctor now he would not consider doing that he said that makes it worse. So yes you are right.

      • Theresa
        May 30, 2014 - 3:55 pm Reply

        Hi Lori

        Like I always say have faith and trust your orthopedic Surgeon if he or she is a good doctor then give them the benefit of the doubt that they know what their talking about and know what you need.

    • Heidi Armstrong
      March 19, 2014 - 3:27 pm Reply

      Sarah,
      Proceed with caution regarding Lori’s advice below. Read my response for a more complete comment.

      Dr. Steadman at The Steadman Clinic is the best in the world when it comes to addressing arthrofibrosis. He recently retired from his practice and has been working with Dr. Steve Singleton to replace him for quite some time. My case was transferred to Dr. Singleton, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, and kindness.

      Traveling to see the right doctor and PT team will save you untold money and pain. If I could turn back the hands of time, I would have left Austin immediately post-fracture and gone to The Steadman Clinic.
      Heidi
      http://www.injuredathletestoolbox.com

  • Carole W.
    February 22, 2014 - 9:58 pm Reply

    I have suffered from arthrofibrosis since my total knee replacement in July of 2006. After an arthroscopy 2 months post-op, stiffness got worse and I was unable to bend my knee more than barely 80 degrees. A partial revision was done the following year and even more scar tissue excised but more scar tissue formed almost overnight again. The stiffness I suffer with is often unbearable but I have been told (by a surgeon no less) that “scar tissue is like cement; once it’s there, it’s there for good”. I PRAY that someone will come up with a solution to help patients like me. I am unable to do many things I did before my knee replacement and would never consider doing the other kinee. Has anyone had any luck or relief? I have tried just about everything, acupuncture, water therapy, massage therapy, 2 years of physical therapy…..all to no avail.

  • Drusilla Whitman
    February 7, 2014 - 1:29 am Reply

    I was 48 I had my first total knee replacement in 2009 and 2010 and again in 2013 had two more surgeries before that in my early twenties I’m in pain 24/7 my doctor wouldn’t listen had to go see another doc and I have a allergy to nickel mental so he went back in Jan 16 2013 still in pain looking at my op report I see I have arthrofibrosis please help I don’t know what to do at this point if u know any doc in San Diego area thank you very much will be 53 in June if I had known this would have never had it done thought I would be out of pain

  • Tracy Reeves
    February 5, 2014 - 5:14 pm Reply

    Hi, I’m so happy I found this site! I have had a RTKR and revision RTKR x 2, the last being six weeks ago in the past three years and only 48! I have apparently too much scar tissue which forms very quickly after surgery and my surgeon said that when he went in this last time the scar tissue was all around my prosthesis. I’ve had manipulations after the last two surgeries but so far I’m ok, he wants to check again in six weeks as the next six weeks as all sorts can change in that time. The pain I have suffered for the past ten years, especially the last five years has been immeasurable and no amount of main meds make a difference. It’s so good to read that there is a name for this excessive scar tissue! I thought I was strange and the only one to experience this. I just wish that at my age I didn’t have to have so much pain, it effects the whole of your life and I’m extremely lucky to have a wonderful, understanding and very helpful husband. I was going to ask my surgeon about this condition when I see him again in six weeks and see what he says. I wonder if it’s as well known over here in Australia? Thanks for listening to my rant x

    • jo habel femslr
      February 26, 2014 - 9:42 am Reply

      I am in the same boat as u re pain with scar tissue pls csn we catch up and discuss this pls sent email. I live in Adelaide SA. Thanks

    • Lynne
      March 21, 2014 - 1:19 pm Reply

      Hi Tracey, I’m from Sydney. I was fortunate after seeing 3 surgeons with no idea and walking out and not returning to find an excellent one who could identify my problem as AF. I was lucky, my logic was if I went in fit to the first surgery and came out that disabled how would I come out better from the next. One wanted to undo the first surgery, ACL Reconstruction, and IF all went well do a 2nd to put it back again. Another wanted to clean the tissue scarring out. Dr Tan, an Australian doctor at St Vincent’s Private hospital was a godsend to me. He was the first to order more tests before stating what he thought( though he already knew). He altered my PT treatment . I still suffer from the pain and problems of AF and the results of it, including Patella Baja, osteoarthritis etc but at least Someone could tell me why and suggest treatment. Unfortunately it was misdiagnosed for too long.

      • Jean jones
        May 5, 2014 - 9:30 pm Reply

        Lynn
        How did the doctor alter your therapy. I too have AF but in the ankle. So debilitating I would like to know how you were treated differently
        GF

  • Gray Arrant
    January 26, 2014 - 10:26 am Reply

    The opinions expressed are strictly my own and are not intended to offend any person or group.
    I have had 7 surgeries in the past year 2012-2013 all on the same knee. I have seen 6 doctors trying to find a treatment for Arthrofibrosis. The lists of doctors I have seen include the Mayo Clinic, Rothman Institute, Steadman Clinic, and various other orthopedic doctors. I have another surgery planned for next week to help with the pain of AF.
    We all face the same problems but we all experience this horrible condition in different ways. We are dealing with the death of a lifestyle we once had and trying to find a solution to regain the lifestyle we lost.
    After reading blogs and talking to the doctors all over the United States there are little to no options we have available to us. From a layman’s prospective unless you are diagnosed in the early stages with this condition there is almost nothing that can done. You never read about someone having Arthrofibrosis for some length of time and posting they were cured or no longer have the condition because of some miraculous treatment or surgery (if I missed this please let me know as soon as possible). As I understand it and have experienced it the more procedures you have on your joint including manipulations and certain types of physical therapy results in more scar tissue build up. By chasing the lifestyle we lost we are doing more damage to ourselves.

    Because we are few in number compared to those that have a positive experience and because we do not speak as one voice to groups such as the American Academy of Orthopedic Surgeons there is no urgency or focus on this condition.
    We must force this issue to the fore front. We must create awareness. We must find a way to gather as one. I would like to suggest we create a national chapter to deal with all the issues we face.
    There will be a great deal of heavy lifting needed to build a national chapter. I am not married to one way of getting things done. I just want to get things moving. My only goal is to start an initial discussion on a national chapter and see where it may take us.
    If anyone has an interest in working on developing this initial concept please contact me @arthrofibrosischapter@outlook.com

  • Linda Ivers
    January 24, 2014 - 12:03 pm Reply

    Does anyone know if ultrasound (not Tens unit) helps to break up arthrofibrosis? Thanks, Linda

    • K Rogers
      January 25, 2014 - 12:10 am Reply

      I have torn both ACL right one 9 years ago and suffered arthrofibrosis but fairly mild and with PT manipulation of patella (not pushing it with therapy) I recovered 100%. I tore my left ACL left this time (surgery June 2012) and again developed arthrofibrosis severe this time and have had a second surgery for debridement (October 2013). Because of the issues I have plantar fascitis of the right leg due to my abnormal gait. My PT is amazing. He gently manipulates the patella 2/week for about 30 minutes each time (through all facets of the joint- absolutely no forcing it to bend), I use a Dynasplint at night and I use a total gym at the lowest level for motion 25 minutes per day (squats). I have gone from originally 80 degrees to 120 degrees (cold) and 130 degrees when massaged (not as stiff). I am tall so my gait is not completely normal yet but much much improved. It is a long road and no one who has not had arthrofibrosis does not really understand how painful and debilitating the disease is. I do not know if I will make it back to any activity beyond walking and cycling again but at this point walking is good. Good luck to all.

      • Polly
        March 25, 2014 - 7:45 pm Reply

        Linda,
        I have tried everything, including ultrasound therapy. My AF is in my hip. Nothing works, and at this point I have been told by 4 orthopedic surgeons, including the chief of Ortho at Mayo, that it was as good as it was going to get. My answer is no, ultrasound did nothing for me.

    • Jennifer
      February 16, 2014 - 1:35 pm Reply

      No I am 100% sure it doesn’t. I had ultrasound before diagnosis with AF and it did nothing. I’ve never heard of it as a treatment for it. You need something much more ‘aggressive’ but controlled than this. Like The Graston Technique or a PT experienced in arthrofibrosis. If you’re interested in reading about my own history with AF, it’s all on the Kneegeeks website. My username is mum2xl.

    • Theresa
      May 30, 2014 - 4:12 pm Reply

      Hi Lori

      I don’t think so because I have plenty of ultrasounds and it did not break up mine. Ultrasounds let you see up close the problem(s) of that given part. The doctors can tell whether or not a problem is there. I hope that help you. God bless. But if you find out that it do tear them apart please let me know.

  • Erin B, PT, DPT, OCS, CSCS
    January 16, 2014 - 2:58 pm Reply

    I am a PT practicing in NJ and looking to refer a patient with severe arthrofibrosis to a specialist in the area (or out if necessary). She is s/p TKA and revision arthroplasty with manip after the primary TKA and an OPA debridement before the revision. Total AROM -10 to 85 and not functional! Healthy, active, young 60yo with total loss of quality living! Appreciate any thoughts!

    • Heidi Armstrong
      March 19, 2014 - 3:08 pm Reply

      Hi Erin,
      Dr. Steadman at The Steadman Clinic is the best in the world when it comes to addressing arthrofibrosis. He recently retired from his practice and has been working with Dr. Steve Singleton to replace him for quite some time. My case was transferred to Dr. Singleton, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, and kindness. Dr. Steadman usually didn’t take TKR cases. **However,** Dr. Singleton may take on cases Dr. Steadman wouldn’t, including arthrofibrosis post-TKR. I recommend calling The Steadman Clinic.
      Heidi
      http://www.injuredathletestoolbox.com

  • Rick
    January 16, 2014 - 9:51 am Reply

    After multiple surgeries and extensive PT resulting from a knee injury suffered when I was 17, I had a TKR in October ’08. I struggled to regain my ROM right after the surgery. My knee was very stiff and very painful and I was stuck at 90 degrees flex with limited extension. This was very frustrating because I didn’t have an issue with my ROM before the TKR and I didn’t even realize it was a possible outcome. Had open surgery 2 ½ years later by same OS to remove a lot of scar tissue, but it was a short term fix, even though I started PT the day of the surgery and pushed it hard. I could feel the scar tissue slowly returning.

    Fast forward to present and I’m stuck at 90 degrees flex and limited extension (+7-10) with constant pain and stiffness again. This battle with Arthrofibrosis (it’s nice to at least have a name for it now) has dramatically changed my life and it’s a daily struggle….one that I feel like I’m losing. I feel disabled and I don’t like it!! I am so glad that I found this website – I now know that I’m not alone!

    I really wish my OS would have referred me to an AF specialist after the first surgery!! Now that I’ve learned about AF, I’m very worried that it might be too late to “fix” it. I’m going to see an AF specialist ASAP.

  • Brenda Reed
    January 14, 2014 - 11:24 pm Reply

    I am 41 and had a TKR October 22, 2013. I was seriously injured at Wal-Mart during black Thursday 2012 by a trampling. I had a scope in February 2013 that did not work for a meniscus year. Since then I have been diagnosed with arthrofibrosis of the knee and cannot seem to get past a ROM of 75. I have recently gotten a brace to make my knee bend. I am having severe pain in my lower right back and hip and it feels like my thigh bone is going to snap in half whenever I have therapy or work it at home. I don’t know what to do and am becoming so depressed and list. I am so written or when doing anything.I am in Memphis, TN. I had a manipulation under anesthesia back in November and the Dr could only get my knee to 90 degrees and said it was the stiffest knee he has ever seen..any suggestions on what I can do to help..I stretch all day every day in one way or another. When I sit with my knees bent in a chair my foot goes numb..I feel like I am going crazy. I can’t sleep at night because I can’t get in a position where I dint ache..please help. I am running out of money and hope.

  • Jessica
    January 12, 2014 - 1:20 am Reply

    I had ACLR October 2012, Scar tissue removal April 2013, and just had meniscus surgery this past Tuesday. I’ve had trouble with scar tissue the first two surgeries. I have been diagnosed with AF & was wondering are there any specialist near west palm beach, fl ?

    • Heidi Armstrong
      March 19, 2014 - 3:02 pm Reply

      Hi Jessica,
      In terms of true patience (severely lacking in most so-called arthrofibrosis “experts”) , presence, expertise, research, rehab approach, there are two clinics in the world that are head and shoulders above the rest. There is one in the US (the other is in Norway). All of us arthrofibrosis-community folks have to ask the doctor question differently. The question to ask is, “Who is the best doctor to take my case?” rather than “Is there a specialist nearby?”

      I’ve been a patient at The Steadman Clinic since October 2011, with my most recent surgery being 3 weeks ago. I’m light years better than I was, and so close to being normal. Over the course of surgery and several insfullations I got all my range of motion back-I was lacking a total of 22 total degrees of extension (compared to the other side) when I started seeing Dr. Steadman.

      Dr. Steadman recently retired from his surgical practice. He has been working with his replacement, Dr. Steve Singleton, for quite some time. My case was transferred to him, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, kindness.

      The level of competence and support at this clinic can’t be found anywhere else in the country. You will have a cohesive team to take care of you from the time you arrive until you leave.

      Heidi
      http://www.injuredathletestoolbox.com

  • Anne MacKay
    January 9, 2014 - 7:37 pm Reply

    I have had 4 surgeries on my right knee,just diagnosed with a.f.following tkr.I live in Chicago arfe there any doctors you can refer me to?

    • The Arthrofibrosis Foundation
      January 10, 2014 - 1:21 am Reply

      Sorry you are going through this Anne. We only know of 2 doctors with significant experience treating AF after TKR:
      Dr Noyes
      Cincinnati SportsMedicine and Orthopaedic Center
      10663 Montgomery Rd
      Cincinnati, OH
      Tel: 347-9999
      http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
      John David Blaha
      Taubman Center Floor 2 Reception B
      1500 E Medical Center
      Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
      1-800-211-8181
      http://www.uofmhealth.org/profile/745/john-david-blaha-md

      • Derna Monacelli
        January 20, 2014 - 5:22 am Reply

        Please whatever you do, do not see Dr. Blaha. He told me there was no such thing as arthrofibrosis. He was rude and very condisending. I would not send anyone I know to see him. He wasted tons of my insurance money and 3 months out of my life doing test after test and basically told me nothing. Just a rude and arrogant person. I still live with this nightmare and I do not trust a surgeon in this entire world. You should take this John David Blaha’s name of this referral sheet. You are sending someone who might have to pay for a worthless and degrading visit to a useless physician.

  • Leann polen
    December 16, 2013 - 6:42 pm Reply

    I have had knee replacement & since have developed a fibrosis knee. Dr has done manipulation, scope, & open surgery. Also, countless hours of therapy. Do I need a referral to see the dr in either Cincinnati or Ann Arbor? Or is there a dr in Missouri or Kansas that specializes with arthrofibrosis? Thank you, Leann polen

  • J. Maple Jr
    December 12, 2013 - 10:48 pm Reply

    Im 24yrs old & in 2012 i developed an infection in my right knee. In result of the infection i had surgery in which the knee was washed out & cleaned to remove the infection. I then had PT which didnt help any. Eventually i developed a completely stiff knee, i cant bend it or straighten it at all. I cant walk at all and have been on crutches for a year. My knee is stuck at a bent position. I have visited numerous doctors & each one of them has told me that i have arthrofibrosis and its nothing that can be done for me to get the movement and flexibility back. If anyone can give me any advice i would greatly appreciate it also i would appreciate it if anyone knows of any doctors or surgeons who can assist me in my problem. I live in Maryland by the way. Thanks alot.

    • Heidi Armstrong
      December 13, 2013 - 11:55 pm Reply

      Hi J,
      I’m just checking to make sure you saw my friend Victor’s post on the “Share Your Story” section of this site. He’s awesome! Give him a call.
      All My Best,
      Heidi Armstrong
      http://www.injuredathletestoolbox.com

    • Laura L
      December 18, 2013 - 1:48 am Reply

      Have you tried hospital for special surgery in NYC? Dr Thomas Wickiweicz He couldn’t cure me but he did an arthroscopic release and I went from 88 ROM to 108 You are so young to have this condition. I think a phone call to Dr Wick is worth a try.
      Best wishes
      Laura

    • The Arthrofibrosis Foundation
      January 10, 2014 - 1:39 am Reply

      So sorry you are going through this. You should contact
      Dr Shelbourne
      Shelbourne Knee Center
      1815 N Capitol Ave, Ste 600
      Indianapolis, IN 46202
      Phone
      1.888.349.5633 (toll-free)
      317.924.8636
      http://www.fixknee.com

      Also please look for a rheumatologist that has an interest in or treats Inflammatory Arthritis. Here is one at Johns Hopkins http://www.hopkinsmedicine.org/allergy/faculty/bingham.html

      Bingham, Clifton O. III, MD (Rheumatology)

      Research Interests

      Targeted Biological Therapeutics in the Treatment of Autoimmune and Inflammatory Diseases

      Chronic Autoimmune Urticaria

      Inflammatory Arthritis (Rheumatoid arthritis, psoriatic arthritis)

      Appointment Phone
      410-550-8089

  • Deborah Doughty
    December 2, 2013 - 1:25 am Reply

    I had a total knee replacement 9 years ago. and I dont know why but it never was right. Last year I went to an orthopedic doctor in kansas city, I live in Chanute Kansas and we have no one here. He said I had arthiobibrosis on my knee and I only have 40 percent motion. He had me go to physical therapy and said there was nothing he could do for me. The physical therapy lasted 5 weeks and they said since they could not do anything for me they would have to quit as medicare or my insurance would not pay. I am in so much pain 24/7 nothing helps. all kinds of pain meds have been tried but most make me sick. From morphine to percocet to arthritis meds, nothing helps. I can not live like this .. I wish and pray that someone out there could help me. I also have duprytrens contracture in both feet and in one hand and have severe degenerative bone disease all over my body.Who do I go to? What do I do.. I sure wish there was something for me! I am utterly sick of the pain and it is almost unbearable. 8 years of this.

    • The Arthrofibrosis Foundation
      January 10, 2014 - 1:24 pm Reply

      So sorry you are in pain Deborah. You should look for a rheumatologist that has an interest in or treats Inflammatory Arthritis. Here is one in Kansas:

      Dr. Aruna Baratham, M.D.
      ARC-KC LLC​
      Allergy and Rheumatology Clinic of Kansas City
      (913) 338-3222
      Leawood ​Office
      8401 West 125th Street.
      Overland Park, Kansas 66213
      (913) 338-3222
      http://www.arc-kc.org/#!physicians/cipy

      Dr. Baratham treats a variety of rheumatic conditions in adults and allergic/asthma/immunologic conditions in patients of all ages. Her key interests include treating inflammatory arthritis, rheumatoid arthritis, gout, asthma and allergic rhinitis. Dr. Baratham is active in medical research to help further the knowledge about and treatment of these conditions. She approaches patients with an understanding of the special issues facing patients with chronic diseases and with determination to help patients achieve health and wellbeing.

      We only know of 2 doctors with significant experience treating AF after TKR:
      Dr Noyes
      Cincinnati SportsMedicine and Orthopaedic Center
      10663 Montgomery Rd
      Cincinnati, OH
      Tel: 347-9999
      http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
      John David Blaha
      Taubman Center Floor 2 Reception B
      1500 E Medical Center
      Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
      1-800-211-8181
      http://www.uofmhealth.org/profile/745/john-david-blaha-md

  • Nancy M. Green
    October 15, 2013 - 7:01 pm Reply

    I fell and broke my right knee in September 2012.

    This knee already had an arthroscopic surgery in 1989 due to breaking the dashboard of the car in an automobile accident. That arthroscopic surgery was needed to remove a plica which continued to be inflamed after months of PT. I developed significant scar tissue and required a manipulation. I have known that I have osteoarthritis for years, but live a healthy lifestyle and was doing fine until the accident in Sept. 2012.

    At the time of the accident my xrays did not show a break, but by January 2013, I was having constant problems with my knee giving way, and essentially being lame in my right leg. At that juncture I chose to visit Sports Medicine at University of Iowa in Iowa City, IA. I was told that my knee cap was broken in two and due to the condition of my knee my only recourse was a TKR. I did not want to have the TKR, because I am only 62, and had hoped to stave off the possibility until I was older. Prior to accident I was walking 5 miles a day and swimming.

    I finally agreed to do the TKR; it was done July 23rd, 2013, and of course, I made scar tissue. The manipulation was Sept. 3rd and I am still in PT. The surgeon was aggressive with CPM, etc. due to my previous history. But nonetheless here it is mid October, and I am only bending on my own at 90 degrees after working out.

    When I asked about ArthroFibrosis, my surgeon said “yes, you make too much scar tissue.”

    I live in Southeast Iowa. Are there any doctors specializing in AF in Iowa or nearby states? Thanks so much. Want to do everything I can to be as active as possible. I am into eating an organic diet, no processed foods, etc. Appreciate your assisitance.

    • Rick Miller
      October 17, 2013 - 10:54 am Reply

      Nancy, my TKR was done Jan. 2013, had a manipulation in March. Constant PT, it is now Oct. and still only at 83 rom, there were gaps in between at PT cause worker’s comp denied them did PT on my own still cannot peddle all the way around on bike, but bend is gradually getting better. Try pool therapy, it might help. I am 63

      • Nancy M. Green
        October 18, 2013 - 2:09 pm Reply

        Rick, Thanks so much. I love swimming. Grew up in CA, so I will definitely try pool therapy.

    • Ron
      November 14, 2013 - 5:49 pm Reply

      In March 2005 I had partial knee replacement surgery. Because of complications with the cement used in the partial replacement, in January 2006 the partial was removed and a total knee put in. This time with screws. My doctor said because of all the prior surgeries I had over a period of 15 years on this knee, and then having these back to back replacements this is one factor that contributed to me developing arthrofibrosis. He tried removing the scar tissue, manipulating the knee, and extensive therapy but no go. Scar tissue grew back. Also in my situation I have not regained any feeling on the right side of my knee. It was my right knee that was replaced. My pain level that I have day to day depends on my activity. I have noticed since moving back to cold weather that the knee aches a lot more. Doctor says in my case that there is nothing that can be done but to deal with it. I’d like to hear if anyone may have similar problems.

  • Stefan Lucas
    October 11, 2013 - 4:39 am Reply

    An athlete my whole life, maintained high level of fitness and health. Knee pain so had bilateral TKR and instead of being better, am now a cripple. Excessive scarring was immediate causing much pain and limited flex. Next had manipulation under anesthesia. Scarring, swelling, pain even worse and still limited flex and pain relief. Next had arthroscopic lysis of adhesions with epidural for pain management. Side effects of the drugs were horrible altho pain was managed. However, flex still not there. Epidural removed and dealt with withdrawal from fentynol plus significant pain and swelling got worse. Doctors have no solution and my life is ruined. Willing to travel anywhere to help, just want to walk again without pain. One doctor recommended another TKR with radiation to address arthrofibrosis at the cellular level. Surgery still experimental and high risk surgery with 50/50 chance of improvement. Looking for a doctor that can help.

    • Mary Offutt
      November 9, 2013 - 5:59 pm Reply

      Stephan, curious as to what did you do for rehab after these interventions. My ROM decreased once I started PT after TKR. After MUA I worked hard with PT to get the leg bending and rather than improving, it got worse week by week. When I had arthroscopic lysis, I’d lost trust in PT and followed the recommendations outlined by Kirk Kokomyer on the kneeguru website. Aggressive PT actually encourages proliferation of arthrofibrosis. Anyhow I ended up victorious though have the aftermath of recurrent synovitis which I can live with.

    • Heidi Armstrong
      December 13, 2013 - 11:53 pm Reply

      Stefan,
      I have been a patient of Dr. Steadman’s since October 2011. I cannot recommend him more highly Dr. Steadman will also treat arthrofibrosis after a TKR, however he is particular about taking cases of this nature. I’d suggest calling The Steadman Clinic and see what they say.
      All My Best,
      Heidi Armstrong
      http://www.injuredathletestoolbox.com

      • Laura Leonti
        December 18, 2013 - 12:38 pm Reply

        Heidi,

        What was your circumstance and what are your results from Dr. Steadman? Can you please share some details?

        Thank you!

        • Heidi Armstrong
          March 19, 2014 - 2:46 pm Reply

          Hi Laura,
          My full story is at http://injuredathletestoolbox.com/why-i-understand/. I can walk now (or before my most recent surgery!); I got all my range of motion back-I was lacking a total of 22 total degrees of extension (compared to the other side) when I started seeing Dr. Steadman.

          Dr. Stadman recently retired from his surgical practice. He has been working with his replacement, Dr. Steve Singleton, for quite some time. My case was transferred to him, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, kindness.
          Heidi
          http://www.injuredathletestoolbox.com

      • Lori Reed
        February 24, 2014 - 11:38 pm Reply

        Heidi,

        I live in Evergreen Co. which is in between Vail and Denver. I was a patient at the Steadman Clinic in Denver for 13 years. I agree that Dr. Steadman is great BUT he does NOT take any patients with AF after a TKR, he will take patients with AF though. I know this because I called him and if they would help anyone you would think it would be a previous patient.

        • Heidi Armstrong
          March 19, 2014 - 2:43 pm Reply

          Lori,
          You’re right. He was very particular about taking TKR cases. That said, in my time there, I met two cases he took on. Also, he recently retired from his surgical practice. He has been working with his replacement, Dr. Steve Singleton, for quite some time. My case was transferred to him, and he did my surgery 3 weeks ago. He is everything Dr. Steadman was–same patience, listening skills, mental imaging skills, surgical philosophy, kindness. **However,** he may take on cases Dr. Steadman wouldn’t, including arthrofibrosis post-TKR.
          Heidi
          http://www.injuredathletestoolbox.com

  • Jeff W.
    October 7, 2013 - 6:05 pm Reply

    I had an ACL reconstruction, micro fracture surgery, exterior+interior meniscectomy on 1/3/2011. Ever since the surgery I have been unable to extend my leg even though I completed the 4 months of PT. Up until today I always assumed that because a resident Doctor performed my surgery(at the time I had no health insurance therefore Medical only uses certain Doctors) and that he may of “messed up” somehow and I would just have to deal with it but after reading up on my situation I believe that Arthrofibrosis is the cause. I now have a pretty decent insurance plan and was wondering how do I go about “fixing” my knee? Is this considered a pre-existing injury that will not be covered my insurance? Any advice would be greatly appreciated! THanks in advance

    • Rick Miller
      October 13, 2013 - 7:09 pm Reply

      Jeff, check your policy. When I had a prior illness then changed insurances, I had to wait 6 months before claiming a prior illness, however injuries maybe different.

    • Heidi Armstrong
      December 13, 2013 - 11:49 pm Reply

      Hi Jeff,
      There are very few doctors in the country who treat arthrofibrosis. If I could start over again on my journey, I would have left Austin and gone straight to Vail to see Dr. Steadman. I got there eventually, but it took a year. I cannot recommend Dr. Steadman more highly; I’ve been a patient of his since October 2011.
      Heidi Armstrong
      http://www.injuredathletestoolbox.com

      • Rrichard Hamilton
        December 20, 2013 - 9:18 pm Reply

        Heidi, I had TKR April 2012 and now have a serious case of arthofibrosis, 95 degree max flex and daily aches and pain. I spend about six months of the year in Breckenridge and have been to the Steadman clinic (other doctors) for elbow and shoulder issues but not the knee. Can you be more specific what Dr. Steadman did for you? I have been told that nothing really works making a knee right again oncne scar tissue has developed. Also, would you be willing to share where in Austin you had surgery? Mine was with Austin Bone and Joint Clinic.

        • Heidi Armstrong
          March 19, 2014 - 2:38 pm Reply

          Richard,
          I haven’t been on this forum in a while, so I’m sorry for the delay in responding. Dr. Steadman disrupts the joint as little as possible. I had two failed surgeries in Austin, TX, in December of 2010 and March of 2011 with Earl Kilbride. Though I had a raging case of arthrofibrosis, he didn’t diagnose it and used a debrider to break up and remove the scar tissue (the worst thing he could have done).

          I’ve learned that almost all surgeons use a debridement tool to remove scar tissue. This tool cuts up and disrupts the extensive vasculature of the scar. In my case, I had two surgeries with Dr. Kilbride who used this device. It dug me a deep, deep hole in December 2010. When I woke up from my surgeries and the surgeon said he had to tourniquet my leg I knew I was in trouble. The debrider is responsible for the proliferation of my scar beyond what it originally was. The bleeding creates an environment for the scar to grow right back–with a vengeance. Dr. Steadman doesn’t remove the scar; he releases it using a teeny tiny heat probe that cauterizes the scar as he releases it. His goal is zero bleeding during surgery.

          All that said, Dr. Steadman retired from his surgical practice recently. My case was transferred (through a meeting with Dr. Steadman) to Dr. Steve Singleton who did my surgery 3 weeks ago. He is every bit as competent (same surgical philosophy) and present as Dr. Steadman. I recommend him highly.

          You can reach me through my website.
          Heidi
          http://www.injuredathletestoolbox.com

          • Michael Fairholm
            June 29, 2014 - 5:29 pm Reply

            Hi Heidi,
            I am british living the UK. 20 months ago I had TKR of left knee followed by 48 hours on a CPM machine in bed (constant passive motion) to prevent Arthrofibrosis, then 6 weeks physio. Unfortunately, I have got it and after 3 procedures of MUA ( Manipulation under anaesthetic) and 6 weeks physio + the CPM each time, all to no avail. I am stuck on 10/90 flexion and extension as was after the TKR.
            My surgeon and the physio guys say nothing further can be done for me. I am a 65 year old, retired from the Royal Air Force having served 25 years, and injured my knee during military service.
            I am afraid that I am not in a financial position to hope for treatment at the Steadman clinic, but maybe the clinic you mention in Norway could be a possibility, so please can you let me have the details of it and address etc?

            Best Regards

            Michael

  • Rick Miller
    September 20, 2013 - 10:29 pm Reply

    Hurt on the job in 2001, finally had to have a TKR in Jan. 2013, then manipulation in March. Still only got to 70 rom. Aug.2013 my surgeon says I’m at MMI with severe arthofibrosis , and my temp total compensation stopped. I did qualify for social security disability, but how long can arthofibrosis last.

  • Rohana McLaughlin
    September 17, 2013 - 10:09 pm Reply

    Four months ago I had TKR and have had little success in gaining more than 98 degrees of flexion in the treated knee, despite diligent attention to doing the recommended PT. I would like to understand more about the treatment that the doctors recommended on your website are doing. I do understand that they perform an arthroscopic surgery on the arthrofibrosis, do they cut the adhesions or is there another way of freeing the knee from the stiffness caused by them? Your answer would help me to make decisions about a course of treatment. I find that the pain, inflammation and lack of flexion are seriously affecting my life. Your help would be most welcome

  • eric
    September 17, 2013 - 8:13 pm Reply

    I need to find a AF specialist and i live in Reno , nevada ?

    • Heidi Armstrong
      December 13, 2013 - 11:47 pm Reply

      Eric,
      You are really, *really* close to the best AF specialist in the world. Dr. Steadman saved me from an uncertain future of disability. I cannot recommend him more highly.
      All My Best,
      Heidi Armstrong
      http://www.injuredathletestoolbox.com

  • Carole Weigel
    September 12, 2013 - 4:08 pm Reply

    I had a total knee replacement in 2006 with almost immediate scar tissue problems. 2 months post-op had MUA which did not help. In 2007, I had a partial revision with removal of large amount of scar tissue completely surrounding the knee. Again, despite all my efforts and MUCH physical therapy, the scar tissue became worse than ever. Now, 7 years later, I am still unable to bend the knee enough to sit comfortably, cannot walk down stairs but one step at a time, the knee is basically”frozen”…….both surgeons who operated on me have not responded to any of my emails; one surgeon who agreed to see me told me point blank “scar tissue is like cement. Once it’s there, it’s there for good!” (not what I wanted to hear). I have tried everything in an attempt to give me some relief from the agonizing stiffness I have suffered all these years and nothing has worked. I have been told “no forced bending” and that any therapy I receive should be “gentle in nature” by a surgeon who was good enough to answer my email. I am really at the end of my rope trying to get some relief. I am sure my family is tired of hearing me complain but the knee replacement has truly ruined my life as I am unable to do much of anything I did prior to the surgery.
    Is there any help for patients like me?

  • Shontel Dunne
    September 6, 2013 - 7:10 pm Reply

    Hi there,

    I had an acl reconstruction done in jan 2012. After a very traumatic situation with the physiotherapist over flexing my knee 5 days after the surgery I have developed arthrofibrosis inside the joint. I had a scan done last year which showed the AF, and another last week that has shown it had spread. I have tried many different medications, a pain patch, manipulation under GA and used a CPM machine. None of which have worked and as I said has worsened. I am now at the point with the consultant that they do not know what to do. I am 23 years old with two young children and really hope their is something that I can do to improve my situation presently. My knee is 15deg off straight and can be bent to 70deg with pain. I really would like to hear what other people have tried? How bad it could affect the knee? And is there a specific consultant in England that may be able to help me as I know the consultant I have does not specialise in AF and wondered if you could tell me whether there is anyone that could help me. Thanks in advance

    • Heidi Armstrong
      December 13, 2013 - 11:46 pm Reply

      Hi Shontel,
      I’m always amazed at the dearth of knowledge in the physio community about arthrofibrosis. I’m sorry you had such a bad experience with physiotherapy. To answer your question: I had two failed surgeries in Austin, TX, in December of 2010 and March of 2011. Though I had a raging case of arthrofibrosis, my surgeon didn’t diagnose it and used a debrider to break up and remove the scar tissue (the worst thing he could have done). Scroll down a bit and see what I wrote to Rd3 about debridement. If you choose to stay in the UK for surgery, chances are your knee will be debrided/you’ll have a lysis of adhesions using the debridement tool. In that case, there’s a good chance your knee will get worse. As crazy as it sounds, I cannot urge you enough to save money and go see Dr. Steadman in Vail, Colorado. He’s the best in the world, and were it not for his skill I’d have no chance of living a normal life. My full story is here: http://injuredathletestoolbox.com/why-i-understand/
      All My Best,
      Heidi Armstrong
      http://www.injuredathletestoolbox.com

  • Jenny
    September 6, 2013 - 6:59 pm Reply

    I tore ACL, MCL, and PCL from a skiing accident on Feb 2012. I waited three months for MCL to heal. Then, had a ACL reconstruction surgery. I developed major scar tissues after the surgery and ROM was 20 degree on extension and 80 degree on flexion after three months of the surgery. I tried jazz brace, biking, rowing machine including three times a week Physical therapy. No additional ROM after three months of the surgery but a lot of pain during exercises. Based on my doctor recommendation, I had arthroscopic surgery to remove scar tissues on October 2012. I faced the same battle with scar tissues. I only gained 10 degree on both flexion and extension. No more progress after three months or so again. Now, I’m stuck with stiff knee at 90 degree on flexion and 10 degree on extension. I visited two different doctors within last 5 months and they both told me to have 2nd arthroscopic clean up. However, their recovery plan is no different than what I’ve done for two previous surgeries. They told me I have arthrofibrosis and I’m only 29.
    I noticed your recommendation on Practitioners but Dr. Shelbourne is in Indiana and Dr. Steadman is in CO. I live in Seattle so wondering if there are any other doctors closer to Seattle that I could see? Many thanks!

    • Heidi Armstrong
      September 19, 2013 - 5:32 pm Reply

      Hi Jenny,
      There are very few doctors in the country who treat arthrofibrosis. If I could start over again on my journey, I would have left Austin and gone straight to Vail to see Dr. Steadman. I got there eventually, but it took a year. I cannot recommend Dr. Steadman more highly; I’ve been a patient of his since October 2011.
      Heidi
      http://www.injuredathletestoolbox.com

    • Heidi Armstrong
      December 13, 2013 - 11:45 pm Reply

      Hi Shontel,
      I’m always amazed at the dearth of knowledge in the physio community about arthrofibrosis. I’m sorry you had such a bad experience with physiotherapy. To answer your question: I had two failed surgeries in Austin, TX, in December of 2010 and March of 2011. Though I had a raging case of arthrofibrosis, my surgeon didn’t diagnose it and used a debrider to break up and remove the scar tissue (the worst thing he could have done). Scroll down a bit and see what I wrote to Rd3 about debridement. If you choose to stay in the UK for surgery, chances are your knee will be debrided/you’ll have a lysis of adhesions using the debridement tool. In that case, there’s a good chance your knee will get worse. As crazy as it sounds, I cannot urge you enough to save money and go see Dr. Steadman in Vail, Colorado. He’s the best in the world, and were it not for his skill I’d have no chance of living a normal life. My full story is here: http://injuredathletestoolbox.com/why-i-understand/
      All My Best,
      Heidi Armstrong
      http://www.injuredathletestoolbox.com

  • Sue McCarrol
    July 20, 2013 - 5:45 am Reply

    I had a TKR in 2008,was doing well till 2012,when my knee began to stiffen. Xrays showed bony growths behind the new knee–what my orthopod called ” a doorstop AF? I can’t flex past 80 degrees, can no longer ride a bike. Now he says I need double hip replacements, as the cartilage is gone on the same leg as the TKR and 90% gone on the other. I’m very afraid of developing more AF around the proposed THR. Is this common? I am in a lot of pain in the hip,but am petrified of becoming more immobile after this proposed surgery. Help!!!

  • R3d
    July 12, 2013 - 10:08 pm Reply

    Had acl surgery 6 months ago in Toronto. Passively can get to 150 and 5 degree extension. Actively around 130 ish. Any advice on if I should do arthroscopic surgery?

    • Heidi Armstrong
      December 13, 2013 - 11:33 pm Reply

      Hi There,
      All arthroscopy is not equal, so I’d say beware, and only do it with the right surgeon (read: Dr. Steadman). I have had arthrofibrosis since a comminuted lateral and medial tibial eminence fracture that extended to my medial tibial plateau. I’ve learned that almost all surgeons use a debridement tool to remove scar tissue. This tool cuts up and disrupts the extensive vasculature of the scar. In my case, I had two surgeries in my hometown from a surgeon who used this device. It dug me a deep, deep hole in December 2010. When I woke up from my surgeries and the surgeon said he had to tourniquet my leg I knew I was in trouble. The debrider is responsible for the proliferation of my scar beyond what it originally was. The bleeding creates an environment for the scar to grow right back–with a vengeance. Dr. Steadman doesn’t remove the scar; he releases it using a teeny tiny heat probe that cauterizes the scar as he releases it. His goal is zero bleeding during surgery.

      So, to answer your question, if you are going to see Dr. Steadman, an arthroscopy may be helpful, but if you’re going to see just about anyone else, it’s likely they will dig you a deeper hole. Good luck!
      All My Best
      Heidi Armstrong
      http://www.injuredathletestoolbox.com

  • Jessica Hardy
    July 9, 2013 - 8:06 pm Reply

    Following my ongoing, painful experience with arthrofibrosis of the right knee I wanted to post a few things that have helped me with the pain and seem to be contributing to slow progress in flexion and maintaining extension of around 5º. I bought a floor pedal machine (looks like bike pedals on a small frame that sits on the floor) for $30.00 on amazon.com. I try to use it every time I’m sitting down. It would easily fit under a desk for people at work. The floor pedals can be used by people with less flexion than a standard, stationary bike requires.

    I go to the pool twice a day, hang onto the edge and sort of just kick my leg around, or alternate between bending my knee up in front of me as hard as I can, then kicking it out, straight behind me. After 20 minutes in the pool, a HUGE amount of stiffness is relieved. Even moving this little bit has been tremendous is relieving pain and helps clear the fogginess of a terribly sedentary life. I also purchased a used CPM machine on ebay.com and am excited for it to arrive tomorrow. I don’t know about everyone else, but I loose a lot of flexion/extension overnight while I sleep. I’m hoping to alleviate this problem with the CPM machine.

    I’ve been dealing with arthrofibrosis since a 01/2013 following a ski injury and two related surgeries. It is a terribly painful, constant and depressing state! I’m currently not working, I’m a nurse and unable to care for patients. Since I’m unemployed I’ve got all day, every day to work on my knee. I understand different people have different amounts of time to put into therapy, but the bike/pool combo has given me the most hope of any treatment I’ve tried. I hope it helps!

    • Debra Maxwell
      July 22, 2013 - 8:12 am Reply

      I am going to take some of your advice. I had a total knee replacement in 2010. The surgeon repaired some ligaments at the same so they immobilized my leg for the first to weeks instead of putting me directly on a cpm machine. I was on Medicaid so my physical therapy was limited. I had one manipulation and they told me I would have to just live with the stiffness and the pain. I’m only 56 and am on disability and receive Medicare. I am too young to live like this. Since you are a nurse you can understand how frustrating it is when you reach out to doctors for help and they show no compassion and they just tell you to live with it and there is nothing more they can do.

    • Heidi Armstrong
      December 13, 2013 - 11:18 pm Reply

      Hi Jessica,
      Those are some really good tips. I’ve had arthrofibrosis since November of 2010. Dr. Steadman in Vail saved me from being disabled for the rest of my life, though I still have a way to go and one more surgery in January. I can’t recommend him more highly. He is an incredible surgeon and an even more incredible human being. He’s one of a kind.
      All My Best,
      Heidi Armstrong
      http://www.injuredathletestoolbox.com

  • Rose S
    July 9, 2013 - 6:21 am Reply

    I had surgery for a tibia plateau fracture on Dec 1, 2012. Things seems to be going well until the orthopedist increased my brace to from 30 to 90. I accidentally jam my leg against the side of the desk as I was swinging my leg out from under the desk chair which pushed the knee joint way up and I heard a crunching sound. I immediately felt pain in my knee and called the orthopedist. I got an appt the next week and they took xrays and said everything was in place and not to worry about the pain, that it would subside. It is now 7 months after my surgery, my knee looks like a melon and I cannot walk on my own as my leg will not straighten and when I try to walk with the walker the pain in my knee gets so bad the knee just buckles. I have been through PT with no improvement and I am currently doing aqua-therapy but it doesn’t seem to be helping. I did research on arthrofibrosis it sounds just like what I have. Please let me know if there are any orthopedic surgeons on the main island of Oahu in Hawaii who can help me. Thank you.

    • The Arthrofibrosis Foundation
      July 12, 2013 - 3:39 am Reply

      So sorry you are going through this Rose and that you have so much pain. Sorry we don’t know an AF specialist in Hawaii. We suggest that you read as much as you can about arthrofibrosis so you understand what to do and what not to do. how to treat it. There are many articles listed on this cite. There is also a lot of information on the Knee Geek website http://www.kneeguru.co.uk/KNEEtalk/index.php?board=9.0.There is a tutorial by Dr Noyes. In general, you want to do everything you can to reduce swelling and inflammation. Staying off the knee, ice, anti-inflammatory diet etc. You can ice 6 or more times a day. 10-20 minutes on. 1 hour off. Look into a game ready machine. Click on the products tab above. All PT should be done in a pain free zone. You don’t want to do anything to make you knee “angry.” You should try to see Dr Millett in Vail Colorado if at all possible. We hope this helps!

  • Carol Horton
    July 6, 2013 - 4:42 pm Reply

    My husband had a total knee replacement three months ago and like the others on this site is experiencing a lot of pain due to arthrofibrosis. His surgeon diagnosed this after a knee manipulation under anesthesia that didn’t work. He is now treating it with a JAS brace where my husband controls the amount of pressure to gain his range of motion. His doctor is very good, but I was wondering if there is another doctor in Florida who may treat arthrofibrosis as a specialty. He/she may be able to offer more suggestions in order to get his range of motion back.

    Thank You,

    • The Arthrofibrosis Foundation
      July 12, 2013 - 3:23 am Reply

      Sorry your husband and you are going through this Carol. We only know of 2 doctors with significant experience treating AF after TKR:
      Dr Noyes
      Cincinnati SportsMedicine and Orthopaedic Center
      10663 Montgomery Rd
      Cincinnati, OH
      Tel: 347-9999
      http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
      John David Blaha
      Taubman Center Floor 2 Reception B
      1500 E Medical Center
      Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
      1-800-211-8181
      http://www.uofmhealth.org/profile/745/john-david-blaha-md

      The closest AF specialist to Florida we know of is:
      Dr Jason Folk
      200 Patewood Drive #C100
      Greenville, SC 29615
      OFFICE (864) 454-SHCC
      FAX (864) 454-8265

      Dr. Folk is a sports medicine specialist with expertise in arthroscopy, including complex hip and knee repair and reconstruction. He is a graduate of the University of Texas Southwestern Medical School where he also served his residency. He completed his fellowship training at the Steadman Hawkins Clinic in Vail, focusing on arthroscopy, sports medicine, and knee and shoulder reconstruction. Dr. Folk is a physician for the U.S. alpine ski team.
      http://steadmanhawkinscc.com/meet-our-doctors/jason-w-folk-m-d/

      • Heidi Armstrong
        August 2, 2013 - 8:18 pm Reply

        Dr. Steadman will also treat arthrofibrosis after a TKR, however he is particular about taking cases of this nature.
        Heidi Armstrong
        http://www.injuredathletestoolbox.com

      • DENISE TOOLAN
        July 2, 2014 - 3:11 am Reply

        Hello Foundation snd Thank You for your wonderful site!
        I had right TKR 3/17/2014, & MUA and 3.5 months of PT. My ROM is stuck at 10/95 and HUGE pain and stiffness from day one. MUA only set me back in the stiffness and pain dept. and 2 months later, I am still at same flexion, no better! I was finally given the AF diagnosis recently.
        I am also desperately searching for AF specialist (after Tkr is the problem)
        I have called Dr J Folk in SC and was told most definitely that he does not take AF (after TKR) patients. I see that you have recommended him for this TKR patient and I am wondering if I have to try there again as maybe I got the wrong information from an uninformed employee? I was very specific with details and had the negative response. I also asked if he could at least recommend another OS that might be able to help and she replied with he “doesnt know of any” How is it that you recommend Dr. Folk, did he once take AF patients and maybe no longer does?
        I will try again if you are sure he does.
        I also tried Dr T. Gill in Boston and was told by his assistant that he does not take AF patients. (Are we that hopeless?) I also replied with a request for a recommendation and I am still waiting for a reply. HELP
        I again thank you for any further/newer information.

        • Heidi Armstrong
          July 2, 2014 - 1:20 pm Reply

          Denise,
          Possibly, the reason you’re encountering hesitance is because a TKR resulting in arthrofibrosis is considered its own issue, separate from arthrofibrosis as a result of any other trauma. Step 1 is to make sure that your prosthetic is the correct size and is placed properly. There are cases where arthrofibrosis arises because of an ill-fitting or ill-placed prosthetic. Not all orthopedic surgeons do TKRs (and/or revisions), so those doctors may be hesitant to see you.

          These doctors would be good for your case:
          1) Jay Rodrigo in Waco, Texas (yeah, I know…**Waco**). http://www.sw.org/Dr-Juan-J-Rodrigo
          2) Fritz Boettner at the Hospital for Special Surgery in New York City

          I know and have spent time with Dr. Rodrigo. He is an excellent surgeon and has the patience and disposition to work with cases like ours (not straight forward break-fix cases).

          If you’re interested in seeing Dr. Rodrigo, email me at heidi@injuredathletestoolbox.com. I can call him and let him know you’re coming his way.
          Heidi Armstrong
          http://injuredathletestoolbox.com/optimal-recovery-from-chronic-injury-in-three-steps/

        • Heidi Armstrong
          July 23, 2014 - 9:47 pm Reply

          Denise,
          Possibly, the reason you’re encountering hesitance is because a TKR resulting in arthrofibrosis is considered its own issue, separate from arthrofibrosis as a result of any other trauma. Step 1 is to make sure that your prosthetic is the correct size and is placed properly. There are cases where arthrofibrosis arises because of an ill-fitting or ill-placed prosthetic. Not all orthopedic surgeons do TKRs (and/or revisions), so those doctors may be hesitant to see you.

          These doctors would be good for your case:
          1) Jay Rodrigo in Waco, Texas (yeah, I know…**Waco**). http://www.sw.org/Dr-Juan-J-Rodrigo
          2) Fritz Boettner at the Hospital for Special Surgery in New York City

          I know and have spent time with Dr. Rodrigo. He is an excellent surgeon and has the patience and disposition to work with cases like ours (not straight forward break-fix cases).

          If you’re interested in seeing Dr. Rodrigo, email me at heidi@injuredathletestoolbox.com. I can call him and let him know you’re coming his way.
          Heidi Armstrong
          http://injuredathletestoolbox.com/optimal-recovery-from-chronic-injury-in-three-steps/

    • yram
      August 27, 2013 - 3:43 am Reply

      You and your husband should seek a second opinion. There are joint replacement specialists who will remove the arthrofibrosis via arthroscopy. I had this procedure with complete success (although the first month of recovery is touch and go and requires avoidance of any PT that stirs inflammation). I also suggest the bonesmart.org forum.

  • Amar
    June 23, 2013 - 4:21 pm Reply

    Hello,
    Greetings!

    My father underwent TKR in the year 2010 and after 2.5 years he was diagnosed AF and he underwent MUA in the year October 2012, Everything was fine till now but again he is diagnosed with Artho-Fibrosis where the tissues have re-developed around Knee.
    Could you please suggest a better solution for this and a doctor who treats better AF in INDIA.

    Thank you in advance for your answer.

    Rgds,
    Amar

    • The Arthrofibrosis Foundation
      June 28, 2013 - 8:06 pm Reply

      Sorry Amar, we do not know of any doctors in India.

  • Crystal Ward-Mason
    June 15, 2013 - 5:20 am Reply

    I slipped and broke my patella 4/2012, it has been a nightmare every since. Nine surgeries later I’m only able to extend about 10 degrees and flex about 78 degrees on a good day. Right after surgery it seems to be hope, I have good ROM but that disappears within a month and ROM declines. I have just come across sites tonight that give my condition a name. I read a site before finding this one and I believe it was reading from my medical record file. My question are there any Specialists in San Diego,CA area?

    • The Arthrofibrosis Foundation
      June 28, 2013 - 8:05 pm Reply

      Sorry you are going through this Crystal. There are no orthopedic surgeons who specialize in arthrofibrosis in San Diego but there is a very good rheumatologist:

      Dr. Ken Pischel
      SCRIPPS CLINIC TORREY PINES
      10666 N Torrey Pines Rd
      La Jolla, CA 92037
      PHONE NUMBER
      858-554-8819

      A rheumatologist at Scripps Clinic, Dr. Ken Pischel’s research and clinical interests include the mechanisms of inflammation and the pathophysiology of rheumatic diseases such as rheumatoid arthritis, lupus, vasculitis and osteoarthritis.
      http://www.scripps.org/physicians/5004-ken-pischel-md-phd

      But after 9 surgeries, maybe another surgery at this point is not the next step. A rheumatologist can attempt to treat inflammation with oral medications and injections. Since Arthrofibrosis is an inflammatory condition, a rheumatologist may give you some relief.

  • Mia Mickley
    June 10, 2013 - 11:14 pm Reply

    My husband had a total knee surgery on Aug 17, 2011. He developed AF but his doctor never did do anything, no MUA or arthroscopic surgery to try to correct or alleviate the situation. He has been in so much pain from day one until now and the pain medication only helps a little. The limited mobility made him homebound, he feels so depressed, and our quality of life have changed dramatically. We went to another doctor for a second opinion and he was diagnosed with AF and RSD. He had done therapies and nerve blocks but of little help/short acting relief. Then he is back to square one. We lived in Gilbert, AZ and I would like to know if you happen to know of a good doctor near our area that we can go to for my husband’s case. Thank you and appreciate any help and advice from you.

  • Irene Rodriguea
    June 3, 2013 - 3:24 am Reply

    I have been living with this problem since 2003. Is there a doctor in Florida. I am tired and in total physical pain. Please help.

    • Christine King
      June 9, 2013 - 11:34 am Reply

      Search the website kneeguru.co/uk There is a tremendous amount of info on arthrofibrosis as well as a list of orthopedic surgeons with experience in dealing with arthrofibrosis.

    • The Arthrofibrosis Foundation
      June 23, 2013 - 9:20 pm Reply

      Sorry you are going through this Irene. The closest AF specialist we know of is:
      Dr Jason Folk
      200 Patewood Drive #C100
      Greenville, SC 29615
      OFFICE (864) 454-SHCC
      FAX (864) 454-8265

      Dr. Folk is a sports medicine specialist with expertise in arthroscopy, including complex hip and knee repair and reconstruction. He is a graduate of the University of Texas Southwestern Medical School where he also served his residency. He completed his fellowship training at the Steadman Hawkins Clinic in Vail, focusing on arthroscopy, sports medicine, and knee and shoulder reconstruction. Dr. Folk is a physician for the U.S. alpine ski team.

      http://steadmanhawkinscc.com/meet-our-doctors/jason-w-folk-m-d/

  • CL
    May 21, 2013 - 5:35 am Reply

    Had arthrofibrosis in 2009 after left knee ACL recon in 2005. Had serious extension and flex deficits in left knee. Went to see Dr. Dragoo at Stanford and he performed a “bloodless” surgery where scar tissue was released without disturbing blood vessels. Knee has almost 0 degree extension and fairly good flex. What helped was the countless hours of knee exercises every day and the mental strength to have faith that it would help and it did. Also, I started going to the gym regularly to strengthen the calves, quads, hams. Back to playing tennis and basketball after so many years of suffering.

  • Peter
    May 20, 2013 - 1:17 pm Reply

    I had tkr in 09 followed by mua then lysis and revision finally in 2011. Surgeon commented on heavy scarring. I can’t straighten my leg out and am in constant pain. Recently diagnosed with patella baja. The new ortho surgeon recommends doing an alteration to the femoral component to re-establish my joint line. I feel that this is more likely an issue with arthrofibrosis. I’m in the Orlando FL area. Please recommend someone.

  • Carolyn Riccardi
    May 20, 2013 - 12:07 am Reply

    Bilateral tkr dec 26 2012 right leg arthrofibrous need to release need help. Should I have orthopedic
    Dr release it with arthro surgery or I there omens special in the boston area thank you

    • The Arthrofibrosis Foundation
      June 23, 2013 - 9:37 pm Reply

      Sorry you have AF Carolyn. The only doctor we have have heard of in Boston is Dr.Thomas J. Gill, but we do not know if he has much experience with TKR. Here is his contact info:
      Thomas J. Gill
      MGH Sports Medicine Center
      175 Cambridge Street
      4th Floor
      Boston, MA 02114-2723
      Phone: 617-726-7797
      Fax: 617-726-6950
      http://www.massgeneral.org/doctors/doctor.aspx?id=16864

  • Alvic
    May 16, 2013 - 11:21 am Reply

    Hi,

    I was searching the web about cases of arthrofibrosis and this site seems interesting. However, I am not from the US and just wondering if you have any sister organization or any partnership with some other organization that helps patients with AF problem.

    I do have problem with my knee after ACL reconstruction and after a 2nd release of arthrofibrosis there was no luck at all.

    Thanks!

    • The Arthrofibrosis Foundation
      June 23, 2013 - 9:24 pm Reply

      Sorry Alvic, we do not have a sister organization or a partnership with an international organization.

  • Teresa
    May 12, 2013 - 12:49 am Reply

    I tore my ACL and meniscus in a ski accident 1/21/13, surgery 2/13/13 and scope and manipulation 4/8/13. I have swelling and obvious scar tissue growth surrounding the incisions near the joint. I go to PT 3 times a week, it is aggressive per my orthopedic surgeon. My knee cap is losing what little mobility it had; I am lucky to extend to 5 and fight for 115 flexion. I suspect arthrofibrosis, but am unsure how to address it. I live about an hour from Pittsburgh, PA…

    • The Arthrofibrosis Foundation
      May 13, 2013 - 5:26 pm Reply

      We are very sorry to hear about your ski accident. We strongly recommend that you contact Dr Millett’s or Dr Shelbourne’s office as soon as possible. Dr Noyes is another possibility. Click on the ” Practitioners” tab for their contact information. We don’t know of any specialists in Pittsburgh so you will have to travel. If you need financial assistance, please apply for an Arthrofibrosis Foundation grant.

    • Heidi Armstrong
      December 13, 2013 - 10:33 pm Reply

      Hi Teresa,
      How are you doing now? Did you seek treatment? If not, let me know and I can provide you with guidance.
      All My Best,
      Heidi Armstrong
      http://www.injuredathletestoolbox.com

  • MK
    May 9, 2013 - 11:29 pm Reply

    My 17 year old daughter had Acl Reconstruction and Meniscus repair after a sports injury in December. She has severe AF and has had 2 manipulations with clean out and capsular release in the last 3 months. Starting PT same say as surgery and she attends 3 days a week. Looking at a fourth surgery in 5 months. Any recommendations. We’re located in Las Vegas, Nevada

    • The Arthrofibrosis Foundation
      May 13, 2013 - 5:19 pm Reply

      We are really sorry to hear about your daughter. We strongly recommend that she sees an AF specialist and that you contact Dr Millett’s or Dr Shelbourne’s office as soon as possible. Click on the ” Practitioners” tab for their contact information. We don’t know of any specialists in Vegas so you will have to travel. If you need financial assistance, please apply for an Arthrofibrosis Foundation grant.

    • MK
      July 31, 2013 - 4:21 am Reply

      I am so thankful that I found this site. With the help of a grant from the Arthrofibrosis Foundation we were able to make the trip to Vail to see Dr. Millett and his team. After a complete exam and medical record review it was determined that another surgery will be needed. We are confident that my daughter will be in great hands at the Steadman Clinic and she will get the specialized care that is needed to treat her Arthrofibrosis.

      There are not alot of Orthopedics out there with the knowledge to treat this condition. The Arthrofibrosis Foundation has provided us with a great deal of information and support. I can not wait to provide update as we continue this journey.

      • R L
        December 29, 2013 - 7:03 am Reply

        MK,

        I hope your daughter is doing well and that she found some relief from her AF. Will you please let us know how she is doing?

  • Kathy Schaben
    May 6, 2013 - 5:31 am Reply

    I had TKR surgery Dec 10 2012 and have range of motion between 64 and 74 with therapy assistance. I have been told by a second opinion that is arthrofibrosis. He did not give me the confidence that he could deal with this issue. I would like to know if there are any Dr. in the Omaha NE or surrounding area that are in the handful of surgeons you mentioned.

    Thank you for any help you can give.

  • Debbie S
    May 2, 2013 - 3:51 pm Reply

    I’m still needing to know if there is a specialist in the Denver area. Thanks.

    • The Arthrofibrosis Foundation
      May 5, 2013 - 6:27 pm Reply

      We hope your surgery went well!! Dr Millett is one of the most experienced (and one of the very best) doctors treating AF but his experience with AF after a TKR may be limited. Since he is close to Denver, we would highly recommend that you contact his office.
      Dr Millett
      The Steadman Clinic – Vail, CO
      181 West Meadow Drive, Suite 400
      Vail, CO 81657
      Phone: (970) 476-1100
      Fax: (970) 479-5835

      We have found that seeing a rheumatologist can be very helpful and you are in luck, one of the best is in Denver ( but it can take awhile to get an appointment):
      Kathryn Hobbs, M.D.
      200 Spruce Street,
      Suite 100
      Denver, CO 80230

      phone 303.394.2828
      fax 303.320.0242
      http://denverarthritisclinic.com/our-providers/kathryn-hobbs-md

  • Debbie S
    April 24, 2013 - 5:29 pm Reply

    I had a TKR 2/26/13 and I am having MAU tomorrow by my orthopedic surgeon. I’m pretty concerned about the outcome despite his optimism. I live close to Denver and wonder if there is a specialist near if needed.
    Thanks!

    • The Arthrofibrosis Foundation
      May 5, 2013 - 6:28 pm Reply

      We hope your surgery went well!! Dr Millett is one of the most experienced (and one of the very best) doctors treating AF but his experience with AF after a TKR may be limited. Since he is close to Denver, we would highly recommend that you contact his office.
      Dr Millett
      The Steadman Clinic – Vail, CO
      181 West Meadow Drive, Suite 400
      Vail, CO 81657
      Phone: (970) 476-1100
      Fax: (970) 479-5835
      We have found that seeing a rheumatologist can be very helpful and you are in luck, one of the best is in Denver ( but it can take awhile to get an appointment):
      Kathryn Hobbs, M.D.
      200 Spruce Street,
      Suite 100
      Denver, CO 80230
      phone 303.394.2828
      fax 303.320.0242
      http://denverarthritisclinic.com/our-providers/kathryn-hobbs-md

  • Robert Bakondy
    April 21, 2013 - 3:49 pm Reply

    I have arthrofibrosis following a TKR. Do you have any specialist in Houston,TX? Thanks!

    • The Arthrofibrosis Foundation
      May 5, 2013 - 6:07 pm Reply

      No sorry. We only know of 2 doctors with significant experience treating AF after TKR:
      Dr Noyes
      Cincinnati SportsMedicine and Orthopaedic Center
      10663 Montgomery Rd
      Cincinnati, OH
      Tel: 347-9999
      http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
      John David Blaha
      Taubman Center Floor 2 Reception B
      1500 E Medical Center
      Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
      1-800-211-8181
      http://www.uofmhealth.org/profile/745/john-david-blaha-md

    • Gary
      January 9, 2014 - 2:47 pm Reply

      Robert,

      I am in Houston. I have artthrofibrosis I would like to speak with you concerning what steps you have taken as of today. Please email me if you have an interest in talking

      • Heidi Armstrong
        March 19, 2014 - 2:17 pm Reply

        Gary,
        I’m in Austin. There isn’t anyone in our area that treats arthrofibrosis properly from a surgical perspective. I recommend calling The Steadman Clinic and setting up an appointment with Dr. Steve Singleton. He took over Dr. Steadman’s (who has been my surgeon since October 2011) surgical practice and did my surgery 3 weeks ago. He is every bit as patient, present, and skilled as Dr. Steadman, and a very worthy successor.
        Heidi
        http://www.injuredathletestoolbox.com

  • Jim Leen
    April 9, 2013 - 8:40 pm Reply

    AF after a TKR, aggressive PT then a MUA, which did not help. I then had a total knee revision about a month later. After aggressive PT and daily visits by a nurse as well as several machines to help with the range a motion I only have a 40 degree flexion. Its been two years and several consultations with doctors who all agree not to touch me in fear of loosing the straightening of my leg. I just turned 52 and my life has totally changed as I live in pain everyday and have a leg that will not bend more than 40 degrees…

    Any suggestions? I live in Los Angeles California and have been looking for someone who understands AF. Thanks

    • The Arthrofibrosis Foundation
      May 5, 2013 - 6:06 pm Reply

      We are so sorry that you are going through this! All PT should be in a pain free zone. “Aggressive PT” can cause more inflammation. Unfortunately, we understand that treating Arthrofibrosis (“AF”) with a TKR is more challenging than AF in a normal joint. We only know of 2 doctors with significant experience treating AF after TKR:
      Dr Noyes
      Cincinnati SportsMedicine and Orthopaedic Center
      10663 Montgomery Rd
      Cincinnati, OH
      Tel: 347-9999
      http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/
      John David Blaha
      Taubman Center Floor 2 Reception B
      1500 E Medical Center
      Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
      1-800-211-8181
      http://www.uofmhealth.org/profile/745/john-david-blaha-md
      There is an AF doctor in Northern California, but we don’t know if he has experience with AF in TKR.
      Colin Eakin, M.D.
      Palo Alto Center
      795 El Camino Real
      Palo Alto, CA 94301
      Main phone: 650-321-4121
      http://www.pamf.org/sports/staff/eakin.html

      If possible, you should see one of these doctors. In addition, you should try to limit or reduce inflammation every way you can. Ice, and elevate as much as possible. Try an anti-inflammatory diet and Udo’s 3-6-9 oil. Look at the products and books listed on this website. There is evidence that Omega 3′s can reduce pain and inflammation. You should also find a rheumatologist. There may be medications or injections that may help.

  • Gail Murray
    April 9, 2013 - 1:53 pm Reply

    I have been suffering from arthrofibrosis since 2010. This was the last major knee surgery I had. It all started in 2008 when I had a rt. medial partial knee. This surgery was painful from the start. Come to find out later the joint was put in on an angle and was digging into my knee cap for a year. When that was discovered the next doctor did a total knee replacement and that had problems from the start. Come to find out later, the pain that I was having from the first partial knee, the doctor told me to tape the knee cap over which caused all this pressure on the rt. lateral knee. Anyway, I feel it changed the whole dynamic of my knee and it would not hold the total knee replacement in place. It was so extremely unstable it just flopped around in my knee space, of course causing a lot of pain. Well the next Dr. told me the knee was totally unstable and needed to be stabilized. He goes in there March 2010 and put these rods and whatever in there, still had horrible pain. Well a couple months later he says basically he forgot to do something and went back in there again. Well finally it felt pretty decent until the physical therapist treated me like a new knee and worked the heck out of it and blew that out of the water. Now it is 2013, the pain is practically unbearable. Every modality that I try just makes the pain and ROM worse. I feel like my life has been taken away from me. I never leave the house. I am so depressed because I feel that I may have to live the rest of my life like this. I am constantly taken pain meds. that really just takes the edge off, very temporarily. I have a profoundly handicapped 32 daughter that I have been unable to take care of and I refuse to put her in a facility. She has only lived this long because of the wonderful care and love that she gets in her home. I just feel there is no hope for me. There was a mention of Dr. Blaha out of U of M. If this is at all treatable I want to go to a physician who specializes in this kind of disorder. HELP!!

    • The Arthrofibrosis Foundation
      May 5, 2013 - 5:56 pm Reply

      We are so very sorry that you are going through this! Unfortunately, we understand that treating Arthrofibrosis (“AF”) with a TKR is more challenging than AF in a normal joint. We only know of 2 doctors with significant experience treating AF after TKR:
      Dr Noyes
      Cincinnati SportsMedicine and Orthopaedic Center
      10663 Montgomery Rd
      Cincinnati, OH
      Tel: 347-9999
      http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/

      John David Blaha
      Taubman Center Floor 2 Reception B
      1500 E Medical Center
      Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
      1-800-211-8181
      http://www.uofmhealth.org/profile/745/john-david-blaha-md

      If possible, you should see one of these doctors. In addition, you should try to limit or reduce inflammation every way you can. Ice, and elevate as much as possible. Try an anti-inflammatory diet and Udo’s 3-6-9 oil. Look at the products and books listed on this website. There is evidence that Omega 3′s can reduce pain and inflammation and depression. All PT should be in a pain free zone. “Aggressive PT” can cause more inflammation. You should also find a rheumatologist. There may be medications or injections that may help.

  • James L. McCrary
    March 26, 2013 - 4:02 pm Reply

    Knee replacement 10-23-2012, 2 MUA December 2012 and January 2013. ROM – ext: 25-30 (15 with person on top of leg pushing), Flex – 95 (102 with person on shin pushing). PT, have reached what they think is all they can do. Is more PT going to help or continue to form more scar tissue, till the knee freezes up? I would really appreaciate any suggestions on what I might do. Also on codone for long period of time, major loss of muscle mass and weight. I’m struggling

    • The Arthrofibrosis Foundation
      March 27, 2013 - 5:10 am Reply

      We are so sorry you are suffering with Arthrofibrosis. It is very important that you see a doctor that has extensive experience with AF and AF in a TKR patient if possible. We understand that Dr Noyes in Ohio has substantial experience with AF in TKR patients:

      Cincinnati SportsMedicine and Orthopaedic Center
      10663 Montgomery Rd
      Cincinnati, OH
      Tel: 347-9999
      http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/

      Aggressive ( painful) PT is not recommended in most AF cases. You don’t want to do anything that makes the knee red, hot, and swollen.

      Where are you located?

      • James L. McCrary
        March 27, 2013 - 11:49 am Reply

        Northern Virginia, about 17 miles from the White House.

        • The Arthrofibrosis Foundation
          March 27, 2013 - 9:07 pm Reply

          Unfortunately, you are going to have to travel from Northern Virginia to see a specialist. Since the treatment of Arthrofibrosis requires very specialized care and there are only a handful of orthopedic surgeons in the world who have a significant amount of experience treating this condition, many AF patients travel long distances to be treated. This is one reason the Foundation was established. We have also heard very good things about Dr. John Blaha. He has experience with arthrofibrosis in TKR.

          John David Blaha
          Taubman Center Floor 2 Reception B
          1500 E Medical Center
          Ann Arbor, MI 48109 Phone: 734-936-5780 Fax: 734-615-8568
          1-800-211-8181
          http://www.uofmhealth.org/profile/745/john-david-blaha-md

    • yram
      August 27, 2013 - 3:59 am Reply

      Where did you have your surgery? Have you sought a second opinion such as at the Anderson Clinic? I am sure someone in the D.C. area performs arthrolysis (arthroscopic lysis of arthrofibrosis). You need to call around and see who does. Another idea: JohnHopkins.

  • Kay Roach
    February 19, 2013 - 3:06 pm Reply

    I am suffering from arthrofibrois after a total knee replacement 8 months ago and would like to find a doctor in North Carolina to help me with this problem. I would appreciate any help in this matter. Thank you…..Kay Roach….

    • The Arthrofibrosis Foundation
      March 27, 2013 - 4:56 am Reply

      We are so sorry you are gong through this. We do not know of an experienced Arthrofibrosis specialist in North Carolina but there is a Steadman clinic in South Carolina:

      Dr. Jason W. Folk
      Steadman Hawkins
      Clinic of the Carolinas
      200 Patewood Drive #C100
      Greenville, SC 29615
      OFFICE (864) 454-SHCC
      FAX (864) 454-8265

      We understand that Dr Folk is very experienced with AF. Dr. Folk is a sports medicine specialist with expertise in arthroscopy, including complex hip and knee repair and reconstruction. He is a graduate of the University of Texas Southwestern Medical School where he also served his residency. He completed his fellowship training at the Steadman Hawkins Clinic in Vail, focusing on arthroscopy, sports medicine, and knee and shoulder reconstruction. Dr. Folk is a physician for the U.S. alpine ski team. http://steadmanhawkinscc.com/meet-our-doctors/jason-w-folk-m-d/. We are not sure of his experience with TKR.

      We understand that Dr Noyes in Ohio has substantial experience with AF in TKR patients.
      Cincinnati SportsMedicine and Orthopaedic Center:

      10663 Montgomery Rd
      Cincinnati, OH
      Tel: 347-9999
      http://www.cincinnatisportsmed.com/index.php/about/physicians/frank-noyes-m-d/

      We realize that you were looking for a doctor in North Carolina, but there may not be a doctor in North Carolina with extensive experience dealing with Arthrofibrosis in TKR patients. Since the treatment of Arthrofibrosis requires very specialized care and there are only a handful of orthopedic surgeons in the world who have a significant amount of experience treating this condition, many AF patients travel long distances to be treated. This is one reason the Foundation was established. We hope this helps!

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