Rare tmj condition - TMJ Disorder -TemporoMandibular Joint Message Board

eklektika · 03-13-2006, 10:02 PM

I just got my results from my cat scan. Apparently I have a rare tmj problem that they had never even heard of before and didn't know how to pronounce it, they have refered me to a specialist out of town.

I was just wondering weather any of you had ever heard of it, I'm afraid I can't remember the name (it started with a c and it was a long and hard to pronounce name) But I have bone and nodules growing around my tmj causing me pain and preventing me from opening my mouth more than 4 mm. But they told me that the nodules can break off and grow bigger because they feed off of some fluid.

Thank you in advance!

RachelS · 03-14-2006, 11:38 AM

First of all, I wish you nothing but the best of luck in trying to figure out what's wrong and getting help!

I suffer from TMJ, but not the type you are referencing. However, a girl that I work with has something very similar to what you are describing, although it's never been referred to as TMJ. She had cysts and growths that sound like what you are describing on her left jaw bone. She ended up having to actually have the bone removed and replaced temporarily with a plastic implant. Soon she will be having another surgery to replace the plastic piece (which isn't very durable) with a bone from her hip.

I know this doesn't sound very hopefuly, but your case might be much less servere then this. The way that the doctors explained it to her was that when there are growths on a bone, they almost always return, even after removal. That's fine on some bones, but on the jaw it's particularly dangerous because eventaully it will prevent any opening of the jaw.

Hope this helps!

eklektika · 03-16-2006, 11:56 AM

Thank you for your reply! But now i'm scared! lol
It sounds like multiple surgeries are required.

The name of mine i found out is synovial chondromatosis.

MoLu · 03-24-2006, 11:52 AM

I was diagnosed with SOC in my left knee last summer. I've had two surgeries so far. One in Sept and one in Oct. Just found out it is already back again. I have heard of this condition in the jaw before and I guess it can be in just about any joint. Google Synovial Chondromatosis and you will find some helpful descriptions but now alot of answers. My OS has refered me to our Medical College to see an oncologist. It is not cancerous but they deal with tumors more than any doctors. I highly recommend you trying to see one. It might be worth a drive if you don't have one locally. My first appt will be coming up this Tues. I running scared myself so I know how panicy you must feel too. Believe me I know how you feel. I'm trying to put this all in prospective. It's not life threatening but a quality of life issue. It's a giant headache I know. I wish you well and please keep posting so I can see how you are doing. Good luck to you.
MoLu

eklektika · 04-13-2006, 10:11 PM

Well I thought i would give an update on my contion just in case anyone else is going through the same.

On saturday i got a lot worse and could only open my mouth a millimeter...normal is 35-50 mm if any one was wondering. I ended up in emergency to try and get some painkillers only to wait 5 hrs for them to give me 3 more xrays and tell me what i already new. They looked dumbfounded though and didn't really know what to do with me, they even called in a dental surgeon to check me out.

I had a surgery consultaion set for May 15 but they bumped it up to today. So my meeting with my surgeon went ok. He wouldn't give it a name or call it what i was told, he didn't want to make a diagnosis until he had proper information...so i had another panoramic xray and i get to get blood work done for a whole list of things. Then i get to go for a 3 hr bone scan and then back to the big city for another ct scan. Then after that i get a biopsy and then he'll make an assesment and i will get surgery when he figures out what he's dealing with. And then perhaps radiology to keep whatever this is from coming back.

For one thing i'm scared that he doesn't know what he's doing. But in his words "it's rare as hell" so i doubt i can find an expert on it. On the other hand he does seem to be taking a lot of precautions and he seems to be doing a lot of research. Plus he's speeding up everything and rearanging his schedual for me.

And what makes me really happy is he was mad because my original dentists negligence as well.

So i may be on a liquid diet for a long while but hopefully my life will be better in the end.