Post by Karen
Post:
I am almost 5 years with arthrofibrosis from a knee replacement. I am at 3/80. The pain is unbearable. It has now moved up to my hip area along with the knee and my foot is asleep. I live alone. It is very hard Since some days. I can’t hardly walk. I am just wondering if there is anything new out there. I have been looked at by a surgeon at Cedars Sinai and he is deciding whether he wants to go ahead and put in a hinged knee with some radiation and clear out the scar tissue. This would be something that’s been done before. I’ve had two complete replacement replacements on this knee. The first knee Done and the surgeon didn’t move me for four days so that’s where I believe all of this begun. I have had many MUA’s and scar tissue removals done and I am in excruciating pain. I live on pain medicine. I have kids and grandkids that I would love to spend some time with. I used to be 125 pounds and ran 5 miles a day and now I have handicap plates on my car and weigh 150 pounds. I’m just looking for someone who can help me out because people with this problem just get ignored and shove aside and I feel very hopeless. But hey, they made me an appointment with a counselor in March 2026 so I could speak about not wanting to kill myself I guess wow. I’m glad the Mental Help is there for us. If anybody knows of any help, I can get I would love it I am new on this site so I don’t know if I’m even posting this and that’s correct Place but I’m in need of help. My kids are worried about me and they don’t know how to help me. I’m so withdrawn from life that my friends are pretty much given up on me because I think they Think I’m just a flake now. I don’t show up where I’m supposed to be because I can’t. I simply can’t move like I used to. Any help is appreciated thanks.
Hi Karen,
I can’t give medical advice because I’m not a clinician, but in my opinion revision knee replacements should not be performed unless there is a problem with the existing prosthesis – that is, if the prosthesis is loose, infected, or there is a mechanical problem that is clearly identified in the scans. I don’t believe that revisions should be performed only because of arthrofibrosis and in our experience repeating the surgery that appears to be the initiating "insult" often doesn’t lead to better outcomes.
I’m aware there are cost barriers, but I feel that it’s important to obtain the opinion of an experienced arthrofibrosis surgeon who is prepared to treat post-knee replacement patients with arthrofibrosis. If you’re able to see the surgeon Dr Jason Dragoo in Colorado, I think that would be helpful. Alternatively, you could request a telehealth appointment with the European Knee Arthrofibrosis Centre (EUKAF), email info@eukafcenter.ch. They can review your scans and provide clinical advice. They may suggest tests for nerve damage and infection, if these haven’t been performed already.
Please know that, unfortunately, you’re not alone and this is not a rare problem. It is, however, a real and complex problem that requires expertise and understanding.
I hope the website helps, please feel free to ask questions. There are also IAA interviews with experienced arthrofibrosis surgeons and physiotherapists available on YouTube, see https://www.youtube.com/@Arthrofibrosis.
All the best,
Kayley