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Knee & Hip Problems Message Board


Knee & Hip Problems Board Index


Thank you for your reply. I'm sorry you had so many years of pain without the proper diagnosis or treatment. I guess I am lucky to have been diagnosed quickly, and to have been living in an area where there is a surgeon with experience firsthand with SC. My surgeon did not feel he would be able to remove my tumors arthroscopically, because there were three groups of them, none of which were inside the joint, and one group sitting on top of my sciatic nerve. 2 weeks post-op now, he believes he got them all in this one surgery, and was surprised they were traveling down toward my knee. I am doing rehab at home, 6 sessions, then out-patient, but will be on the walker 12 weeks total. I expected the worst, but am incredibly happy with the results. It could have been much, much worse; but it wasn't. Now I too, wait, to see if they come back. I hope you remain tumor-free. Thank you for sharing your story.
Hi Martha,

Thanks for your response. I hope everything is going well s/p TKR! When did you have that done and how are you doing? Now that rehab, I am very familiar with. ;) Wow, so your knee required 4 separate surgeries. I know there is up to 25% recurrence rate, but did they do a total synovectomy on your knee round one? Or just partial?

Yes, this diagnosis is definitely unique to me--I thought I had heard of all the current diagnoses since I am a new grad DPT. Was so surprised this was never discussed and I think the must frustrating part of the diagnosis itself is not knowing the prognosis, rehab, and/or CAUSE of the disease! That was supposed to be my advantage when it came to musculoskeletal pain. ;) Yes, I will definitely serve my hours on the rehab table, but hopefully will be able to get back to work ASAP to serve my patients. The bright side: this is a great way to learn what my patients go through. How long were you out of commission before you could return to work after your knee surgeries? What ended up being the cause for repeat surgeries? Return loose bodies?

Luckily (or not so luckily), I didn't seek out medical advice x 3 years as it really didn't disturb my activities. I even continued to run. Being that I waited so long, I actually had ossification of some of the loose bodies in my hip, and this is what lead to a speedy diagnosis. Only thing that concerns me, is approximately 6 months ago, I started having left knee pain and popping too. The disease is USUALLY monoarticular. Did you have only left knee issues?

Have you ever thought about what might have contributed to your issue? Activities (running, hard labor, etc.), lifestyle, etc? I'm thinking about putting together some sort of coorelation report between what might be linked to this excessive synovial creation...

Thanks again for sharing your info on the disease!


Jennifer
Hi Jenn-
My first surgery was a frontal arthroscopy only. They did the biopsy then for the initial dx. We thought going in it was PVNS but he said the minute he was in he knew it was SC with all the glistening little pieces. Unfortunately for me most of the disease was behind the knee. Then a month later he did the open posterior. Just a few months later my knee was full again so he sent me to an OO. I had a team do this next surgery. One OS did the front arthroscopic and the OO did the open posterior all in the same operation. It was easy to bounce back from the frontal part but that open took the wind out of my sails. It took a couple of months to return to work. I started out part time for a couple of weeks and then moved into full time work. I do have a desk job. The hard part was bending the knee. It was sore on the edge of the chair.

I get along pretty well but my leg continues to give me problems. I still have several pieces behind the knee. One in particulare has given me problems but is in the worse place. The OO doesn't want to do any more surgery because it is so close to the nerves and blood vessels. I walk kind of stiff legged sometimes. And my knee is always still swollen even after my TKR. I am know having problems with my back and piriformis muscle. So I have had many PT appts and know am trying my luck with a chiropractor. I have neuropathy in my leg and am not sure if it is caused by the larger lesion behind my knee or my back. I have had two EMG's saying different things. One points to the knee and the other to the back. Even the doctors don't agree. I think it is probably a little bit of both to be true.

I don't know what might have contributed to this disease. I'm 61 now and have been pretty active most of my life. Did a lot of skiing when I was younger. Broke my ankle and twisted my knee several times years ago. So I can't really link anything to this. Part of the charm of SC! I does seem to have stopped at least for now. I don't know if the pieces left behind are going to grow. The OO said it was a possiblity but they have not grown much in the past few years.

It has been life changing for me though. I was pretty healthy until this and now it seems I am going to the doctor all the time. I'm always trying to feel better but I think I need to learn to live with it. I'm always searching for an answer to get my leg back to normal.

I have know of another lady who had SC in the hip and has had good results with her treatment. She did end up getting a hip replacement though.
Please feel free to PM me if you'd like.
Martha





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