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    Old 05-03-2006, 11:32 AM   #1
    MoLu
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    synovial chondromatosis

    Hi all-
    Looking for other patients of synovial chondromatoisis. Would love to know your experiences especially other treatments you might have had other than synovectomies. I've had a complete synovectomy in my left knee last Oct 05 and it has reoccured already in March. I'm now recovering from another synovectomy (open knee surgery) and am wondering what others have found on it reoccuring again. Would love to connect with more people on their experiences. I do have some tibial nerve damage but it's not too bad. Just can't stand the thought of it coming back again. Anybody?
    Martha

     
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    Old 06-08-2006, 04:24 AM   #2
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    Re: synovial chondromatosis

    hi...i too have synovial chondromatosis but of the hip...had arthroscopic surgery and everything grew right back...not sure what my next step should be...looking for a dr that is very knowledgable about the condition...finding it very frustrating...maybe we could share info...jackie

     
    Old 06-08-2006, 07:17 PM   #3
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    Re: synovial chondromatosis

    Hi Jackie-
    Glad to hear from someone. I was kind of giving up hope. I'm six weeks out from my last surgery but my knee feels just the same as it did before surgery. I think it is too soon for another MRI to see if it is back already but will be seeing the Dr on June 20th. I'll see then.

    I don't know of a Dr who is VERY knowledgable but my Dr is an oncologist at our local Medical School. Everything I have read people say to go to an oncologist for the best results. Unfortunately there aren't many of us out there. He has treated many he said. One girl had 8-9 surgeries before they finally put in a new knee. I guess she was pretty young. Another he said comes back every 5 years and gets cleaned out and one has turned to cancer. Yikes!

    I have read so many different opinions regarding radiation. If that is ever offered as a suggestion I would have to think hard and long about it. Most people just seem to keep going back to surgery and hoping for the best. This might not be life threatening but it sure is affecting my life. How are you coping?

    Have they said they want to replace your hip? I'm 55 and feel I'm too young for a knee replacement yet. Would like to hold on a little longer before that happens. How old are you?

    I'm in Milwaukee. Where are you located?

    I hope to hear again from you too. Let me know how things are getting on for you. Ask me any questions and offer some info to me too if you have any suggestions.

    Martha

     
    Old 06-09-2006, 04:27 AM   #4
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    Re: synovial chondromatosis

    dear martha...i am on long island in new york...i will be 54 in two weeks...the possibility of these turning cancerous troubles me a little ,although my surgeon says they won't ,i have read where they can...i am going to make an APPT WITH A DR IN MANHATTAN FOR MORE INFO...I DON'T WANT TO DO A TOTAL SYNOVECTOMY BECAUSE THEY STILL CAN'T PROMISE THAT IT WON'T GROW BACK...IT IS A MAJOR SURGERY...I PREFER TO LIVE WITH A SMALL [FONT=Arial]LIMP AMD SOME PAIN...I AM WONDERING IF I CAN JUST WEAR OUT MY HIP AND THEN REPLACE IT...IT IS ALL SO FRUSTRATING...YOU SEEM TO HAVE HAD A TOTAL SYNOVECTOMY AND IT STILL CAME BACK...AS FAR AS AN ONCOLOGIST NOONE HAS MENTIONED THAT TO ME...THEY SEEM TO FEEL I NEED NOT WORRY ABOUT THAT...OH WELL...I WILL LET YOU KNOW IF I LEARN ANYMORE...HAVE A GOOD WEEKEND...SORRY ABOUT MY CAPS...THE KEY GOT STUCK...BYE FOR NOW...JACKIE

    Last edited by jaq625; 06-09-2006 at 09:44 AM.

     
    Old 06-09-2006, 10:46 AM   #5
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    Re: synovial chondromatosis

    Hi Jackie-
    Hope the docs are leading you in the right direction. They sent me to an oncologist not because of a cancer scare but because they are use to dealing with tumors of all kinds. Acutally most oncologists list conditions they deal with and benign soft tissue tumors are listed. My doc says he gets the patients usually when there is a recurrence. Unfortunately none of them can give you any definite prognosis. It's a crap shoot I'm afraid.

    I too feel so let's just get a new hip/knee when we need it but I think because of our ages they hestitate. We aren't too old yet right?! Revisions on prothesis's are very hard and we have a few years yet to go. Let me know how your dr visit goes. Good Luck!
    Martha

     
    Old 06-12-2006, 05:17 AM   #6
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    Re: synovial chondromatosis

    hi martha...i will call for an appt with the new dr today...however, he is just an orthopedist although a reknowned one...i did find the name of a dr that specializes in soft tissue tumore but my surgeon doesn't feel i need to bother with that...he keeps telling me not to worry about the tumors but to worry about what they will do to my hip joint...i don't really understand that...i may have to see both drs to get all the info i want...i keep finding that these drs are not on my medical plan...my arthroscopic hip surgery cost me $8000 and the ins. co. paid $8000 for a total of 16,000 for the surgery...i hope you are having a good day...i will keep you posted...jackie

     
    Old 07-01-2006, 08:49 PM   #7
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    Re: synovial chondromatosis

    Hi Jackie-
    So did you meet with a new dr and get some new info? I've had an MRI again because I sure felt like it has come back again. I don't know what to make of the results. It says there are still 3 dominate pieces in the same area that was reported on the last MRI before surgery. Also states there is a synovium process still going on. I have two dr's who did the last surgery and I have met with the artho dr who did the front of the knee. Since there is no recurrence listed on the MRI in the front part that is all she would talk about. Wouldn't talk at all about the pieces in the back since she didn't operate on that. She feels my pain is due to a strengthening issue and I just need PT to continue. I'll meet with my oncologist at the end of JUly. She did hint that maybe those pieces where left in there on the last operation because of their location. You'd think someone would have mentioned it to me if they had left some in. Anyway I'm a little confused now if it has come back or not. I'll just have to wait and see.

    I hope you are doing well and aren't in too much pain. This is all such a nusance to deal with. It sure has affected my life. Keep in touch.
    Martha

     
    Old 07-03-2006, 04:25 AM   #8
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    Re: synovial chondromatosis

    hi martha...i am sorry to hear you are having a great deal of discomfort...i seem to feel the same way...you mentioned that your dr said (after the fact) that he did not get everything out during surgery...my surgeon told me the same thing the last time i spoke with him...he made it sound as though i should have known he might not be able to get everything...i am glad you went for the mri because i drove my self crazy with pt and trying to figure out what stretches might help etc...i do feel better when i work out so in a few minutes i will go to the gym...however...all the pt or stretching in the world isn't really going to help if there is still stuff in the joint restricting the motion...i will be seeing the new dr on the 14th...i reall don't expect much...i believe it will come down to living like this until we are ready for replacements...it does take a toll on my life...i don't do very much because after i do all that i have to do i don't feel like making the effort to do anything else...also, i am divorced and used to date...i now feel i can't meet anyone the way i am...sooooo...we will be tough and get through it somehow...feel better...i will be in touch...jackie

    Last edited by jaq625; 07-03-2006 at 04:25 AM.

     
    Old 07-15-2006, 08:09 PM   #9
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    Re: synovial chondromatosis

    Hi Jackie-
    So just wondering how your appt went with the dr. Is he recommending a hip replacement or to wait a while longer?
    I felt better this week and have been working harder at PT. So then today I had a little more active day than usual and feel like crap again. One day I feel a little better and the next right back where I was. I'm sick of being sick! I sure don't feel like my old self. Feeling pretty old and decrepid.
    As far as dating again you should go for it. I think most people have some ailment or another. We all go into a relationship with some baggage or another.
    I recently read a article regarding SC and they said the average number of years before a person gets a knee replacement after the diagnosis is 1 1/2 years. And get this there is a 25% chance of recurrence even after that. Won't this ever end! I have my dr's appt this Fri and hope we have a good discussion. I hate leaving the dr and feeling like nothing was accomplished. Feeling kind of lost on all this. It's hard to not dwell on it when everytime you move it hurts.
    Hope to hear some good news from you. Keep in touch.
    Martha

     
    Old 08-11-2006, 11:37 AM   #10
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    Re: synovial chondromatosis

    For all of you in this thread, could you describe how your symptoms started?
    Thank you in advance.

     
    Old 08-12-2006, 11:18 AM   #11
    MoLu
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    Re: synovial chondromatosis

    Hi-
    Let me try this again. I posted a long detailed response and it didn't go thru so I'll try again.
    My symptons started maybe 6 years ago. My knee started swelling off and on and I had a general full feeling with a slight pain in the back of the knee. It would lock sometimes when I'd get out of a chair but didn't last long. Also an unexplained numb heel. Could not completely flex or extend my leg either. My dr and I thought it probably was arthritis so he sent me to PT without any xray or MRI. PT helped a little but not much. Continued on with minor limitations until one day my foot went numb. Then I decided this was not normal and needed to find out what was happening. Went to the dr and got blood work first. Found I had low thyroid and low B-12 but this was affecting only one foot and not both so he sent me to get an ultra sound of the knee to check mainly on my blood vessels. Showed I had a Bakers cyst but blood flow seemed normal. So he sent me to an Orthopedic Surgeon who specialises in feet. He took an x-ray and it came back normal so he didn't know what was causing the foot problem. I told him the only other thing that hurt was my knee so he ordered a MRI. Finally it showed the tumors all thru my knee and they were pressing and stretching my nerves and blood vessels. He then sent me to another OS who specializes in knees. I had first an arthoscopic frontal synovectomy and got a firm diagnosis of SC. Then he did a posterior oen knee synovectomy. A couple of months later it just didn't feel right again and the nerve showed no improvement so I had another MRI and it was back again. He sent me to an Orthopedic Oncologist who preformed another frontal and posterior synovectomy. A couple of months after surgery I still don't feel right so another MRI shows I still have some tumors and still am having nerve problems. Not sure what my next step is. My nerve problem concerns me the most.
    I hope I've answered some of your questions. Do you suspect you have this disease? Another synovium disease is PVNS which has similar symptons. If you have any other questions just write and I can see if I can help. The MRI is the best dx tool for this disease. X-rays don't always see it until it ossify's. Good luck to you in your research.
    Martha

     
    Old 08-14-2006, 11:16 PM   #12
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    Re: synovial chondromatosis

    Thanks Martha. To answer your question, no, I do not feel I have this. I'm having hip problems myself and came upon this thread. It seems terribly disabling. I hope you can get things straightened out.

     
    Old 09-14-2006, 07:47 AM   #13
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    Re: synovial chondromatosis

    Goodmorning,
    Iím writing you because I have the synovial chondromatosis on my left knee.
    Iím 33 years old, and I live in Italy.

    Do you have any suggestion where in the USA I could find the best orthopedic? Because in Italy is a very rare desease and it is difficult to find a good orthopedic/oncologic that know how to manage it.

    And I have another question: I did 3 operations (synovectomy) but everytime the deases is reoccured increased. After each operation I have huge pain on my knee and lag. I would like if it is happen also to you.
    Also now after 3 yeas from my last operation I have pain and I have difficult to do the extension/flextion of the knee. The doctors (orthopedics and oncologists) sadi that there are no solutions and the suggest to do another operation but the do not confirm the good results.

    Thank you very much
    Ale

     
    Old 09-14-2006, 06:28 PM   #14
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    Re: synovial chondromatosis

    Hello Ale-
    Isn't the internet wonderful to be able to talk to someone else with your condition so far away. You are right- there are not many of us out there so thank you for writing.

    I wish I knew of a super orthopedic oncologist but I just don't know myself. I know most of our surgeons of this caliber are associated with a university in each state. I'm struggling myself right now with my oncologist if I should go somewhere else. I'm not happy with the team approach they used and feel I was bounced between the two drs without very much compassion. I need a dr who will do the whole procedure and engage in good dialogue concerning this disease. I know another lady here who is happy with this team approach so it is probably just me.

    I've had two synovectomies and still have some missed pieces behind my knee. Just had an MRI and no new growths just the missed pieces but my knee seems to be falling apart. MRI showed a loss of cartilage in one compartment by 50% in just 2 months time. Also a fissure in another cartilage. The arthritis is really setting in which I guess can happen with this disease. I meet with my oncologist next week to discuss my next move. I know I'll need a knee replacement sooner or later but it might be sooner than later. My knee feels fragile and tight but I see there is fluid on the knee causing some of this.

    I too have never been told a surgery will end it all but that seems to be the only thing they can do. I've had two arthoscopies and two posterior open knee surgies in less than a year. I'm hopeful that it has at least slowed down if not ended since there are no new growths right now. My oncologist says it can stop just suddenly as it starts since they don't know what triggers it.

    As far as doctors go since you would have to come such a long way I think I'd look at Harvard University for a good dr. Harvard doctors have a very good reputation and seem to be the cream of the crop.

    Glad you contacted me and keep in touch please. Take care and I hope you find an excellent dr.
    Martha

     
    Old 09-15-2006, 02:30 AM   #15
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    Re: synovial chondromatosis

    Ciao MARTHA,
    thank you very much for your promptly reply.
    I will check for a doctors at Harvard, what do you think about *** (hospital for special surgery) in New York?
    Just a question: are you able to flex/exten your leg? I could not do any steps...

    thank you
    ale

     
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