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Knee & Hip Problems Message Board

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Hi everyone - I am a 23 year old female with synovial chondromatosis. 6 years ago I noticed that I could not bend my knee all the way (I couldn't sit on the back of my heels). I was very active in cheerleading and dance and my GP said I had tendonitis and sent me to PT. I kept cheerleading all thoughout college, and just kept going to the athletic trainer for pain and swelling treatment. I have been out of college for 1.5 years now, and the pain has become worse. I went to an orthopedic surgeon and he did an MRI and found that I have loose bodies in my left knee joint and left tib fib joint.

My OS sent me to an orthopedic oncologist at our local medical college because he has delt with this disease before. The OO recommended 1) monitor to see if it gets worse 2) do a scope 3) do a scope and open up the back of my knee. I asked him if this is something I could put off for 5 years or so because it is not getting in the way of my daily life and is not too painful - he said he wouldn't recommmend it because it could damage my knee joint.

At this point, I am thinking of doing the scope and just taking out what they can get at (the dr. said he would use 6 scopes). I don't want to open up my knee if it will just come back again. After reading the other posts, I am wondering if this is the right choice. I didn't know that this disease was so debilitating. Right now, it is just frustrating for me, but I can walk fine and I have no nerve damage.

Is it better to get the surgery now before it gets worse or should I just wait and see if it gets worse? I think I might be in an early stage.

Please help!!
I just have to reply. I'm from Milwaukee too and have synovial chondromatosis. You probably have read some of my previous posts in the years past on this board. I very sorry to hear you have to deal with this stupid disease too. In fact I'm home recovering from a knee replacement I had just a little over two weeks ago.
We are all different and will react different and heal different but I'll give you my two cents worth. I was dx'd in 2005. Since then I have had two artho scopes on the front and two open synovectomies on the back and ending here with a TKR. More surgeries than I care to report. Each one did debulk the disease and when I had the TKR the dr said there was very little evidence of the disease. He could see thru the knee and see some in the back yet but I was aware that it was there by previous MRI's. I can't say yet how this will all turn out since it is so early but this TKR has been extremely painful.
In my humble opinion I'd wait until it really bothers you. The surgery itself can be very hard on a joint. I did wait for years before trying to figure out what was going on and probably waited too long. My knee was pretty much stuffed with tumors by that time and putting pressure on my nerves causing my foot to go numb. My nerve has never come back and I still have a numb foot. So you do have a gamble but surgeries are no picinc either. My OO also said that most people are happy with only one surgery and it is successful but he tends to get the ones that weren't successful. I don't know if you are like me though and just wanted to get it out of me. Kind of felt like cancer but thankfully it is not. I suspect you will eventually need surgery but don't jump into it. Surgeons like surgery. Maybe I'm feeling this way right now because I am having a hard to recovering yet from another surgery.
Good luck to you and if you have more questions please let me know. I would love to help or at least sympathize with you.
Hey Mart16,

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.
Hello there!
Your husband is in a sticky spot. That is alot to happen to his knee in just 3 years. We do have many similarities. I am much older so the decision was a little easier for me to get a TKR. The materials in a TKR are getting better and better and I bet you could have one last 20 years now. Even at that he is so young. I really think he needs to continue with PT to help work on his range of motion. Each surgery will just make it worse I'm afraid. Even with a TKR it is a fight to get your range of motion and you have to be diligent about it. Has he had a MRI after his last surgery? Do they see more growths? Get his reports yourself and compare them. The pieces I have left behind my knee really were never resected. They were right there next to the nerves and blood vessels and the doctor said they could not have been in a worse place. Each new MRI I could compare the results and you can actually see if its the same piece just left or an actual regrowth. The doctor said its a particular hard surgery because the pieces can be everywhere and in every nook and cranny. He said it is not black and white. He also said even if a dr says he is giving you a complete synovectomy it is really impossible to get it all out. And of course anything left can cause problems down the line. I'm glad you are seeing an OO for this. It has taken me years to come to some peace with my knee. It seems to have stabilized and I don't think the left in pieces are growing. I do have a tendon that pops over it when bending my knee but my range of motion is very good. I too cannot kneel. There is no SC that I know of in the front of my knee but it still hurts to touch it. So I'm not sure if the SC keeps my knee in an inflamed state or not. What does his dr say as to why he is still having problems? Is he confirming there are more growths? I really think you need more time to see how this goes for you. Once you do a TKR there is no turning back. I did know a lady that was in alot of pain like your husband and she too begged her doctor for an amputation. He would not do it. She is working now with a spine doctor and has had an operation to help with her nerve pain. I will contact her to see if she can tell us how that is going for her. Tell your husband I wish him well and strength to put up with all of this.

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