Re: Newly diagnosed with synovial chondromatosis - need advice!
Your situation sounds really similar to my husband's. He is 28 and began having knee pain at about 25 years old. He had knee pain for about a year then saw a OS who did an exploratory arthroscopy and diagnosed him with SC.
The OS referred us to a great OO who has now done a second scope and 2 open surgeries from the back of the knee to remove loose bodies, all with only partial synovectomies (he says he is hesitant to do a total synovectomy because he is so young).
The tumors keep growing back within about 6 months of having surgery which is hardly enough time for my husband to heal before the next surgery comes. Each surgery is causing more and more scar tissue, scarring-in the nerves and blood vessels. He is in constant pain; from the tumors before the surgery and from the incision and the scarring after the surgery, making him unable to live a normal life.
His knee joint is so contractured now that he can only walk with a visible limp and forget about kneeling or sleeping normally. The OO released the joint capsule during the last surgery but that doesn't seem to have helped (my husband thinks its because he left some tumors in the front of the joint that are preventing full movement).
Physical therapists and the surgeons can't seem to do any good for him now. His OO recommended the knee replacement in the next year, but I know those only last about 10-12 years which does not seem like long.... I even joked about amputation and the surgeon said it honestly may be an option someday in the future.
We are just becoming so hopeless and can't figure out what to do next. Do you think he should do the TKA and just stop putting it off? I have thought about trying more natural methods like lymphatic drainage massage to slow down scarring, etc., but those just seem too tame for the aggressiveness of his SC. Ideas for any type of PT that works especially well? Any advice at all would be extremely helpful.
Last edited by bsuepape; 04-02-2015 at 02:16 PM.