@lilbit , I also have severe arthrofibrosis. I will have to disagree with the others that have said arthrofibrosis does not cause swelling and pain - it most certainly can.
I know this due to both my own experience and a review of the literature and other sources available on the web. Pain and swelling are second only to reduced range of motion as commonly described symptoms of arthrofibrosis.
In my own case, I suspect that that the scar tissue that restricts my range of motion is itself stressed by everyday movements and stressed tissues respond with pain and swelling, naturally enough. Of course this may not be the case with you, though with only 30 degrees range of motion I would suspect it strongly.
I wish I had a miracle cure to recommend to you but I don’t. Although it has not been very successful for me, many people do find relief with surgery.
What I would say is the following:
1. First rule out all other causes - misplacement or loosening of the implants, metal allergies, or infection. It would be a bummer to go through another full surgery only to get no improvement because you had an allergy for example.
2. Competence and skill really matters - for a patient with arthrofibrosis a run-of-the-mill OS is not good enough. You need a specialist that is a recognized leader in the field. Travel if you have to.
3. (This part is my opinion and not everyone will agree with it.) If your problem can be addressed with an arthroscopic procedure, do it. It is much less stressful and less likely to generate more scar tissue from the procedure itself. David Millet, currently at the Steadman Clinic and a recognized leader in treating arthrofibrosis, has been quoted as saying that people with AF should not have open LOAs since the open surgery may trigger the formation of even more scar tissue.
Some surgeons will tell you that an arthroscopic lysis of adhesions is not possible because of the difficulties of working in such a small space - one of mine told me that. What is probably true is that most general orthopedic surgeons cannot do it. I found a surgeon that only does arthroscopic procedures and is widely recognized as one of the best, and he got me 20 more degrees of flexion, bringing me to 90.
Unfortunately, I still have a number of issues, chiefly pain and to a lesser extent swelling. I blame this in part on four procedures (three open, one arthroscopic) performed over seventeen months. I wish I had the experience and understanding then that I do now - after the first TKR didn’t work out I would have gone right for the arthroscopic LOA/MUA and then stopped, completely skipping the open LOA and full revision that I went through and that added much to my pain and swelling.
If you do go the surgical route, get the very best surgeon you can and make this your only surgery.
Good luck.
Canada
