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Author Topic: synovial osteochondromatosis  (Read 1139 times)

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Offline Mrraybarton

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synovial osteochondromatosis
« on: August 05, 2007, 07:45:53 PM »
Ihave had synovial chondromatosis for six years I have had surgery to remove two tumors at the back of the knee and may need a future operation I find the condition quite limiting in the area of mobility you do not seem to be able to walk very far without pain or what I have self descibed as brick leg eg when I walk to far the leg turns into a brick I would be interested to know if other people with this have this feeling and knows why I am only able to work p/time despite all this I am very confident in managing the condition although because this is rare there is no information or area for discussion like other common ailments such as arthritis it seems to be just a small network of people over the internet I am with a good oncologist
symtoms are unuasual and hard to descibe at the moment I have a lump rolling up and down the side of the leg and the brick leg and leg collapses with body weight walking to far are these symtoms common of this condition can you relate to thes symptoms and have you mobility problems

Offline MoLu

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Re: synovial osteochondromatosis
« Reply #1 on: August 06, 2007, 04:28:22 AM »
Hi Mrraybarton-
I too suffer from SC and you have probably read some of the other threads I've started here.  I still lurk here from time to time checking to see if someone else shows up with the same condition.  Not many of us around.  I have had symptons previously with the piece of SC on top of my kneecap that used to go up and down while climbing stairs.  I use to have it hold it in place sometimes so it wouldln't irratate me.  That has been since removed.  So I know what you are talking about there.  Not sure about your feeling of a brick leg.  I have complained to the dr once that my calf feels harder that my other calf.  He said sure enough it did but that was all that was said.  I've never had my leg collapse before but I have heard others complain of that sympton.  Also locking.  I went thru a spell of my knee doing that but it is ok now after surgery.  How many surgeries have you had?  Open or artho?  Has it returned?  Would like to hear your story.  We are trying to start up a forum on the internet.  Just google Synovial Chondromatosis Forums and you will see it.  It's brand new and would welcome your experience to share.
The pieces right now that I have in my knee are behind it also.  Don't feel much of anything in the interior of the knee joint which is good.  My ROM is actually pretty good at the moment.  Knock on wood!
Chat me with any other questions.  We'll compare notes.
Martha
Synovial Chondromatosis
9/16/05 Frontal synovectomy and tumor removal
10/26/05 Posterior open knee surgery and synovectomy with tumor removal
3/8/06 Disease is back
4/26/06 Frontal arthoscopic synovectomy and posterior open knee synovectomy
6/23/06 Disease is back
7/24/07 Synvisc
10/23/08 TKR

Offline Mrraybarton

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Re: synovial osteochondromatosis
« Reply #2 on: August 06, 2007, 07:06:01 PM »
good to hear from people with the same situation I think researching each others experiences may help control this condition to a certain degree i have only had one operation with open surgery at the back of the knee an incision with about a 9 inch scar at the back to remove the tumor the size of a conker and equally hard texture the flexion is better I had no flexion before the operation although bodyweight on the leg is still painfull the operation took place in october 07 with about 3 month recovery the surgeon will not yet remove the other lump just yet.the surgery has to be praised they have done a fantastic job.The problem now is the weakness of the leg and bodyweight stiffness locking ect.I challenge this condition and experiment with my own leg.walk short distances and rest pace youself through a day .Go swimming to maintain muscle building without bodywweight three times a week go to hydrotherapy every week the secret is in the water laying at night with your leg over a cushion helps.on my next hospital visit they will discuss an mri scan to check for the return I am still a bit confused about alll this recurrance but will deal with whatever its just good to be monitered

ps good luck with forum :)