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Old 04-26-2012, 05:52 AM   #16
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Re: I have Synovial Chondromatosis - 31 year old female

Hardlyhipping,

It sounds like you are doing really well! I am so glad. Many people never have the disease return -- I hope that is the case for you!

Rebecca

 
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Old 05-10-2012, 08:01 PM   #17
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Re: I have Synovial Chondromatosis - 31 year old female

My surgery was almost 4 weeks ago, and the surgeon feels he may have gotten all the tumors out in this first surgery! The largest of these benign tumors, was 2 cm. There were over 100 loose bodies! In a few weeks, my doctor will send me for another CT Scan, to make sure he removed all of them, and continue monitoring me yearly, as the tissue can change at any time.

 
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Old 09-08-2012, 11:44 PM   #18
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Re: I have Synovial Chondromatosis - 31 year old female

Quote:
Originally Posted by hardlyhipping View Post
My surgery was almost 4 weeks ago, and the surgeon feels he may have gotten all the tumors out in this first surgery! The largest of these benign tumors, was 2 cm. There were over 100 loose bodies! In a few weeks, my doctor will send me for another CT Scan, to make sure he removed all of them, and continue monitoring me yearly, as the tissue can change at any time.
Hello Hardlyhipping: I am a newly diagnosed female with synovial chondromatosis of the right hip. I started having hip pain after a prolonged bout of excessive running/overtraining (approximately 3 years ago). At the time, I was running minimum 6 miles/day, up to 10, and occasionally taking 1 day off after 10 days of running a row. I of course, attributed my hip pain to either a hip flexor tendonitis and/or labral tear of the hip secondary to the clicking & deep snapping sensation I had.

I am a Doctor of Physical Therapy, and of course, just received the one diagnosis that is completely rare and was not discussed in my program... (just when I thought I knew all the musculoskeletal diagnoses!).

Strangely enough, both myself, and the orthopedic surgeons that I work with on a daily basis in Alaska have minimal experience with the rehab of this disease after hip arthroscopy with synovectomy.

What was your experience with rehab? How long did it take? How long were you non-weightbearing? What kind of surgeon did your arthroscopy? Was he experienced in synovial chondromatosis?

Most importantly, how are you doing these days? Were you able to return to your previous lifestyle? I'd be curious also, what your lifestyle was like prior to surgery, have you ever thought of what might have contributed to the development of your disease? I am assuming mine was a chronic inflammatory state of my synovium due to overuse syndrome, as trauma is one of the causes of the disease. Otherwise, it's cause is relatively unknown.



Anyway, I would love to hear some of your experiences with the disease, and the outcome of your surgery/rehab. Thank you!! I am looking at an October 2012 surgery date, with an orthopedic surgeon who does hip scopes, but I doubt has ever worked with SC before...!

 
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Old 09-13-2012, 07:59 PM   #19
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Re: I have Synovial Chondromatosis - 31 year old female

Hello Jenn-
I too have SC but of the left knee. Those of us with SC certainly get to know our PT's and think highly of them. We spend many hours and months working alongside each other. Sorry you will be the one on the table now!

You are right not many doctors know of SC let alone know how to treat it. Most of us take years to get a diagnosis. Since it is so uncommon a doctor does not have the chance to be particularly skilled in it. I do recommend seeing if you could go to an Orthopedic Oncologist for the surgery. They are skilled in removal of tumors of all kinds. Even benign soft tissue tumors.

I did read once the rehab for SC should follow the same requirements of some one that has RA. Would that be a little gentler than most rehabs? I've had two frontal arthroscopic synovectomies and two open posterior synovectomies. Ended up having a TKR. I have not had another recurrence but seem to be bothered by some left over pieces behind the knee that they didn't get out. It's been an ongoing struggle.

My first surgery they had me in a brace but could weight bear immediately. The next surgery no brace and could still weight bear. That helped alot. I did have months of rehab after each surgery but have regained full ROM.

I hope things are going well with you and let us know how it all goes.
Martha

 
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Old 09-13-2012, 10:48 PM   #20
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Re: I have Synovial Chondromatosis - 31 year old female

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

 
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Old 09-14-2012, 09:00 PM   #21
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Re: I have Synovial Chondromatosis - 31 year old female

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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