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Old 11-09-2008, 06:29 PM   #1
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Newly diagnosed with synovial chondromatosis - need advice!

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!!

 
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Old 11-10-2008, 10:10 PM   #2
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mart15 HB User
Re: Newly diagnosed with synovial chondromatosis - need advice!

Megs-
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.
Martha

 
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Old 11-12-2008, 06:18 PM   #3
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Re: Newly diagnosed with synovial chondromatosis - need advice!

Hi Martha,

Thanks for responding! I hope your recovery goes well. You have been through a lot!!

I think I have decided to do the arthroscope and see what happens. If surgery is inevitable, this is the best time in my life to have it done. I am going to do it over winter break so that I don't have to miss school or work. I work in the summer - so that wouldn't be the best time for me.

How long does it take to recover from an arthroscope? I think my Dr. said 1 month - is that accurate? I am getting it done Dec. 18th and would like to be OK for New Years - not to go out, but to have a few drinks at home (my friends are going to sacrifice going out to be with me - isn't that nice?). I hope I'll be able to lay off the pain killers by then so that I can have fun. I am also hoping that I will be able to walk by Jan. 12 when school starts again. I'm a little nervous about walking 8 blocks to class in the WI winters with all the ice and snow. I'm sure my Dr. will tell me all this when I meet with him next Friday, but I'd rather hear it from someone who has actually gone through this.

Also, my Dr. said that he would be removing the entire synovial lining when doing the scope - is that what you had done? The doctor that is doing the surgery is my OS, not the OO that I saw (he doesn't do scopes). The OS said he does about 2 of these surgeries a year. That does not seem like a lot, but he is excellent with a scope in general (he is the surgeon for all the pros in MKE and the MU athletes) so I'm pretty confident in him.

Any insight you could provide would be very helpful.

Thanks,
Megann

 
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Old 11-13-2008, 09:45 PM   #4
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Mart16 HB UserMart16 HB UserMart16 HB User
Re: Newly diagnosed with synovial chondromatosis - need advice!

Hi Megann-
It sounds like this is the right time for you to do surgery. There is no clear right or wrong decision with this disease but the timing sounds good for you. Most OS's never see this disease so it is hard to get anyone with any real experience. OO's tend to see more generally because most OS's send their patients to them. That is the OO's specialty - tumor removal. Benign or cancerous. My OO said he gets the recurrences most often after the first surgery wasn't a success. It does have a high rate of recurrence but many find that one surgery will be successful.
My OO did not do arthroscopy either so he asked another OS specialist to join him. The OS did the frontal synovectomy. The OS was going to attempt to remove the synovium and tumors in the posterior also but could not get a clear vision so she aborted that part of the procedure. The OO then did an open posterior synovectomy. I'm assuming you will be only having the frontal done. Am I correct? If this is correct I'd say that a month to 6 weeks is a likely recovery. Hopefully this will debulk it enough to make you comfortable and reduce any damage to your knee.
At this stage for me it is hard to say if the SC hasten the arthritis or the multiple surgeries. Probably all the above but at least there was very little evidence of the disease in my knee when they preformed the TKR. I am certainly hoping this is the end of SC but SC has been know to recurr even after a TKR. The odds are in my favor though. Just so you do realize that a complete synovectomy is impossible in the true sense. There are too many nooks and crannies for it to hide. I actually have it outside the knee capsule now. In one of my bursae but it does not bother me there at all. I still have a spot of it behind my knee that the dr could see thru the knee during the TKR but I was aware of that thru the MRI's. It hurts from time to time but nothing to warrant another surgery.
I hope you have a very successful surgery and keep us posted in the days ahead.
Martha

 
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Old 12-23-2008, 09:30 PM   #5
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Re: Newly diagnosed with synovial chondromatosis - need advice!

Megann-
Just wondering how your surgery went? What did they find in your knee? Hope you are still visiting this site and will give us an update.
Hoping it went well and you will be able to enjoy the holidays.
Martha

 
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