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Old 05-19-2008, 10:29 AM   #1
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I have Synovial Chondromatosis - 31 year old female

I have Synovial Chondromatosis - here's my symptoms and story.

I began feeling a "strange" feeling in my left knee when I was 31. It lasted several months. One extra busy week, it hurt more than usual and at the end of the day I finally decided to rest. As I was lifting my leg up into the bed, I felt something shift in my knee and then I could no longer straighten it or bend it fully.

I waited for three days to see if it would go away itself, but, when it didn't get better, went to the doctor. After an Xray and two MRI's with no definite diagnosis, the orthopedic surgeon preformed an exploratory scope. They found loose bodies inside with one of them lodged in my knee joint (causing the joint to lock). They did a partial synovectomy and diagnosed Synovial Chondromatosis.

I underwent physical therapy afterwards, but a year later was not satisfied with the results and requested more physical therapy. I now can flex my knee completely and nearly extend it fully.

Now I'm 34 and the same "strange" feeling has returned in the same place on my knee. I plan to rest much more than I did 3 years ago and not push it until it hurts painfully as I did 3 years ago. I'm hoping to put off another surgery until Fall of 08 by resting it, but I have accepted the fact that surgery is probably part of my near future.

I hope my story helps someone.
DarkDazzler

 
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Old 10-25-2008, 05:28 PM   #2
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Re: I have Synovial Chondromatosis - 31 year old female

Quote:
Originally Posted by DarkDazzler View Post
I have Synovial Chondromatosis - here's my symptoms and story.

I began feeling a "strange" feeling in my left knee when I was 31. It lasted several months. One extra busy week, it hurt more than usual and at the end of the day I finally decided to rest. As I was lifting my leg up into the bed, I felt something shift in my knee and then I could no longer straighten it or bend it fully.

I waited for three days to see if it would go away itself, but, when it didn't get better, went to the doctor. After an Xray and two MRI's with no definite diagnosis, the orthopedic surgeon preformed an exploratory scope. They found loose bodies inside with one of them lodged in my knee joint (causing the joint to lock). They did a partial synovectomy and diagnosed Synovial Chondromatosis.

I underwent physical therapy afterwards, but a year later was not satisfied with the results and requested more physical therapy. I now can flex my knee completely and nearly extend it fully.

Now I'm 34 and the same "strange" feeling has returned in the same place on my knee. I plan to rest much more than I did 3 years ago and not push it until it hurts painfully as I did 3 years ago. I'm hoping to put off another surgery until Fall of 08 by resting it, but I have accepted the fact that surgery is probably part of my near future.

I hope my story helps someone.
DarkDazzler

 
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Old 10-25-2008, 05:40 PM   #3
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Re: I have Synovial Chondromatosis - 31 year old female

I have synovial chondromatosis of the hip. It started 7 years ago,when I was 39. I was diagnosed promptly and had arthroscopic surgery. Less than a year later the symptoms returned. 3 years ago I had an open synvectomy and in the last 6 months the symptoms and disease has returned, as shown by an MRI. I am now dealing with the pain, mostly at night, until I get a hip replacement. My doctor is ready when I am. I am still hoping it will somehow go away on its own, but it looks like a hip replacement is inevitable.
I am a very active individual and am quite disappointed with this disease. I was hoping to find someone who is actually cured of it or at least have relief for quite awhile.

Good luck on your next surgery. I hope it works.

 
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Old 10-25-2008, 10:57 PM   #4
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Re: I have Synovial Chondromatosis - 31 year old female

Jane,

I hear your distress and feel sorry for your situation. I myself am trying to put off having both knees replaced because I'm too young (39) to do it. And doing a hip replacement at your young age would not be fun at all.

 
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Old 12-01-2009, 01:16 PM   #5
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Re: I have Synovial Chondromatosis - 31 year old female

I was wondering how Jane is doing? I have had hip pain for at least 10 years. 8 years ago it was x-ray'd with no diagnosis. Last week I just couldn't stand it anymore and insisted on another x-ray. This time they discovered SC and I'm waiting to go see a specialist. I figure I've had it for over 10 years........I also am very active. I'm 42 and have mainted my high school weight even after having 2 children, I walk at least an hour every day, sometimes 2. I love to ride horse/motorcycle/bike and play tennis. I have tried to ignore the hip pain but can no longer do it. Mostly hurts during work day while sitting. up and about feels much better, I also wondered if you had back pain.
I just wanted to hear your story..........

I'm of the opinion that having a hip replacement now would give me years of active life instead of wasting these years dealing with pain, slowing down, gaining weight. I don't want to be old and tired before getting a new hip - I want it while I can enjoy it......

hope to hear from you - gimpyhip

 
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Old 12-05-2009, 08:54 AM   #6
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Re: I have Synovial Chondromatosis - 31 year old female

Hi Gimpy Hip,

I am feeling great since my hip replacement. No pain at all. I do not have any restrictions except running. If I do overdue exercise I feel some twinges in the hip. I currently walk, do yoga, low impact aerobics.
I did at one time have back pain that I associated w/the disease. Maybe because I was walking w/a limp. I was very uncomfortable walking and couldn't walk for long distances. I was unable to sleep at night due to the pain.
Having a hip replacement was a big deal for me. It was a last resort that I felt I had to take. I wasn't convinced it was the right thing to do until a month after recovery when I was feeling good & now feeling great.
Now, I never think about the disease and it seems it was a life time ago.
Good luck with any decisions you make. I hope your feeling better soon.
Jane

 
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Old 04-09-2012, 08:12 PM   #7
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Re: I have Synovial Chondromatosis - 31 year old female

I too have a horse, but could no longer ride her. My daughter took her out of state, and then I was diagnosed with synovial chondromatosis of the left hip. My first surgery is 4/13/12. I cannot find anyone posting about hip cases more recent than 2010.

Please tell me:were you ever able to ride your horse again? Unfortunately, my two surgeries cannot be arthroscopic, so my rehab will be intense. This is the first post that indicates an active lifestyle prior to surgery! It's killing me not ro ride my girl!! Thank you for your reply.

 
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Old 04-09-2012, 11:32 PM   #8
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Re: I have Synovial Chondromatosis - 31 year old female

Hi there -- lots of folks don't stick around for long, once they recover from whatever brought them to post. I hope that you get a response, but it's possible that this person is out enjoying life!

I am a little curious as to why you need an open surgery, since I had a partial synovectomy during my most recent arthroscope.

I can only say that arthroscopy or open, hip surgeries are not to be taken lightly. My situation involves 15 years of an undiagnosed labral tear, one bad scope, and a half of the acetabular cartilage found delaminated in my most recent (third) scope. I am ten months post-op and sometimes still have the type of hip pain that stops me in my tracks. Many, many people have much more favorable recoveries, and I would recommend going to the best surgeon you can find.

 
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Old 04-10-2012, 04:35 PM   #9
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Re: I have Synovial Chondromatosis - 31 year old female

My case is synovial chondromatosis of the left hip. I have over 100 loose bodies, and they are not inside the joint, and that is why my surgeries cannot be done arthroscopically. These tumors will mostly be removed by hand, in two separate procedures, 3-4 months apart, one on the side of the hip, and the other toward the front. Believe me, I wish it could be easier, but I always get these rare diseases!

 
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Old 04-10-2012, 05:43 PM   #10
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Re: I have Synovial Chondromatosis - 31 year old female

Oh boy -- not an easy process for you. Thanks for the clarification.

After having three hip scopes, I have needed a lumbar spinal fusion which apparently has caused a condition called complex regional pain syndrome, so I definitely understand where you are coming from, though I don't have quite the same problem.

Be sure to find the very best surgeon that you can. I went into my first hip scope thinking that any orthopedic surgeon would be able to do this operation. Later, I found the ortho for a football team. I respect him as much as any of my doctors, because he spent an hour examining me and he told me that could not help me surgically and referred me out. (He has treated me for other issues, but he knows he has limitations which is rare in surgeons!)

Most of the folks who post here have knee issues or are having a hip replacement. I hope that the original person sees the e-mail notification regarding your post and responds with information specific to your question.

 
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Old 04-10-2012, 07:33 PM   #11
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Re: I have Synovial Chondromatosis - 31 year old female

Hardlyhipping-
I too have synovial chondromatosis but of the knee. I just wanted to let you know I have a friend who also has it in the hip and I will contact her to check this board. Hopefully she will be able to give you some helpful advice.

I agree that a specialist is needed in our cases and I highly suggest an Orthopedic Oncologist. Has your doctor done this procedure before? Most OS's have never seen this disease let alone have much experience with it. OO's would have a higher degree of experience because they handle tumors both cancerous and benign.

I'll let my friend know you are looking for support and good luck to you.
Martha

Last edited by Mart16; 04-10-2012 at 07:33 PM.

 
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Old 04-12-2012, 10:52 AM   #12
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Re: I have Synovial Chondromatosis - 31 year old female

Hardlyhipping,

I had synovial chondromatosis in my right hip for 21 years before I finally had a hip replacement. It took my 13 years to get diagnosed, at which point I had an arthroscopic procedure. That helped a little, but there were many, many pieces the surgeon couldn't reach. The disease continued to produce more loose bodies, and I also developed end-stage arthritis. The doctors said all they could do was replace the hip. I was very concerned about the SC returning and I had family obligations, so I put the replacement off for almost 3 years. Then I reached a point where the pain was unrelenting and I could do very little. I had the replacement in June 2010. It was a very long recovery, but I am glad I did it. I am still waiting to see if the SC returns. I'd be happy to try to answer any questions you have, although I did not have the open procedure surgery. I think you will have a better outcome than I did with the arthroscopic, as they can remove so many more pieces.

Rebecca

 
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Old 04-25-2012, 02:30 PM   #13
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Talking Re: I have Synovial Chondromatosis - 31 year old female

Thank you for your post. I had my surgery on April 13th, 2012, and my surgeon, an Oncology Orthopedist, believes he may have gotten all of my tumors, over a hundred, in one surgery! I went straight home from the
hospital, and have been able to do rehab at home with a therapist, while my staples are still in my hip. I am making good progress.

 
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Old 04-25-2012, 03:25 PM   #14
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Re: I have Synovial Chondromatosis - 31 year old female

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.

 
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Old 04-25-2012, 08:26 PM   #15
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Re: I have Synovial Chondromatosis - 31 year old female

Glad to hear you are doing so well. If you keep a journal of things you can do each day, you can take a look at it later when you get frustrated. You will probably be surprised by the amount of progress you are making.

 
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