eklektika
03-14-2006, 01:02 AM
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!
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!
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RachelS
03-14-2006, 02:38 PM
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!
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, 02:56 PM
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.
It sounds like multiple surgeries are required.
The name of mine i found out is synovial chondromatosis.
MoLu
03-24-2006, 02:52 PM
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
MoLu
eklektika
04-14-2006, 01:11 AM
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.
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.
luvtocamp
04-14-2006, 03:41 PM
I really wish you all the best during this trying time for you. I can certaintly understand being scared, I would be too not knowing for sure whats going on.
This is a very good place for support. Glad they bumped things ahead for you.
Sounds like your in good hands. Please keep us posted on your progress as were
all rooting for you.
This is a very good place for support. Glad they bumped things ahead for you.
Sounds like your in good hands. Please keep us posted on your progress as were
all rooting for you.
MoLu
04-15-2006, 12:57 AM
Your right it's very rare. I read that only 1 in a million get SOC and I bet it's even rarer in the jaw. Any joint can get it but the knee is most common but still rare. I've met with the oncologist now and will have surgery 4-26 on my knee. This waiting has been hard. My knee seems to be getting stiffer and more painfull day by day. Seems more aggressive this time around than last. I'll have two doctors doing the surgery. One will do arthoscopy and remove the lose bodies withing the knee capsule and the oncologist will remove the tumors via open knee surgery outside of the knee capsule. Oh boy two doctor bills! I pray this will do the trick this time. He hasn't mentioned radiation but my first OS didn't sound like he thought that should be done. He said radiation kills tissue which is good but it also kills the good tissue right along with the bad. Go slow on that if that is suggested to you. Your surgeon is right to do a biopsy right away. That is the only way for him to be sure it is SOC. I wish you well and keep posting so we can see how you are doing.
MoLu
MoLu
Shirlett
05-09-2006, 01:18 PM
I have been fighting with this for over seven years. I have had over 50 cyst removed from my left and right jaw joint and now have another one on my right. The specialst I went to was shocked since according to him once they are removed in the majority of cases they do not return. I have had what bone I had left burned to try and keep them from attaching to my bone since all they do is damamge it. Once I had the TMJ Concepts put in the hope was that they could no longer attach and grow but that theroy has been blown out the window. I also found out through research that they are more common in the knees and wrist but rare in or around the jaw joint. My "samples' have been sent all over with no solution to stopping them.
Good Luck.
Shirlett
Good Luck.
Shirlett
eklektika
05-18-2006, 08:54 PM
Shirlett i was wondering weather you had a synovialectomy...where they remove all of the synovial sack? Because mine has been confirmed as synovial oesteochondramatosis....but no one here has dealt with this before, but they are planning on removing everything. My surgery is June 1st.
MoLu
06-09-2006, 10:25 PM
E-
I see you posted you were having surgery on the 1st. I've been wondering how you are doing. You are in the recovery process right now and I hope you are feeling better.
I'm six weeks out from my surgery on the knee. I'm back at work but limping around. It seems to be a much more painful my recovery than last. The 1st time it seems I had more ROM problems but this time it's a painful recovery. Almost feels like it is still there. Heaven forbid.
I went to the Dentist recently and told him I had SOC and asked him if any of his patients had ever had SOC in the jaw. He said no and he had never run across it. Just so happens his nephew was visiting the clinic at the same time and he dragged him in to say hi and to tell him what disease I had. He is studing to be a doctor. Of course he said "cool". Easy for him to say.
I've been researching as much as I can on the disease and if you go to Pub Med and search SOC you will see many papers written on SOC in the TMJ. Might give you an idea where they have doing the procedures around the world. Might see something of interest to you.
Well hope to hear from you and good luck.
MoLu (Martha)
I see you posted you were having surgery on the 1st. I've been wondering how you are doing. You are in the recovery process right now and I hope you are feeling better.
I'm six weeks out from my surgery on the knee. I'm back at work but limping around. It seems to be a much more painful my recovery than last. The 1st time it seems I had more ROM problems but this time it's a painful recovery. Almost feels like it is still there. Heaven forbid.
I went to the Dentist recently and told him I had SOC and asked him if any of his patients had ever had SOC in the jaw. He said no and he had never run across it. Just so happens his nephew was visiting the clinic at the same time and he dragged him in to say hi and to tell him what disease I had. He is studing to be a doctor. Of course he said "cool". Easy for him to say.
I've been researching as much as I can on the disease and if you go to Pub Med and search SOC you will see many papers written on SOC in the TMJ. Might give you an idea where they have doing the procedures around the world. Might see something of interest to you.
Well hope to hear from you and good luck.
MoLu (Martha)
ranosb
08-06-2006, 02:47 AM
What did you liquid diet consist of?
eklektika
12-04-2006, 01:44 AM
I know old thread but there is little info for other people with this condition. I am schedualed for a second surgery on Jan. 16th and at the moment the plan is to take everything but the joint itself out, this means a complete sonovialectomy. This surgery worries me a bit this time due to the fact that the pices that are in there he left due to their position which is near a major artery which he says no one goes near unless they absolutely have to. So the closer to the date the more i am panicing, i also worry that the synovialectomy will not solve the problem.
If anyone wants to share their stories that would be great.
Oh and those on liquid diets one combination i didn't mind was chicken and green beans and gravy...it tasted a lot like chicken a la king.
If anyone wants to share their stories that would be great.
Oh and those on liquid diets one combination i didn't mind was chicken and green beans and gravy...it tasted a lot like chicken a la king.
MoLu
12-09-2006, 01:10 AM
E-
Sorry to hear you have to have another operation. I've had two synovectomies so far in my knee for this condition and both were also around the nerves. It's a tricky operation that is for sure. I hope you have confident doctors doing the procedure. I'm still struggling with nerve damage caused by the tumors and will have another MRI this mon. to see if I have any recurrence. Also a few small pieces were missed on my last surgery so they are monitoring their growth. If that is not enough now I'm dealing with arthritis in the knee and will need a new knee down the road. My knee is still painful when I walk after 8 months. My range of motion is much better though.
I have run into a few more people with this disease over in the knee/hip area of this forum. Check it out sometime. We come from all over the world and it has been interesting to meet and learn from others experiences. I wish you well and keep in touch. Others down the road might benefit from your experience since not much is know about this disease.
MoLu
Sorry to hear you have to have another operation. I've had two synovectomies so far in my knee for this condition and both were also around the nerves. It's a tricky operation that is for sure. I hope you have confident doctors doing the procedure. I'm still struggling with nerve damage caused by the tumors and will have another MRI this mon. to see if I have any recurrence. Also a few small pieces were missed on my last surgery so they are monitoring their growth. If that is not enough now I'm dealing with arthritis in the knee and will need a new knee down the road. My knee is still painful when I walk after 8 months. My range of motion is much better though.
I have run into a few more people with this disease over in the knee/hip area of this forum. Check it out sometime. We come from all over the world and it has been interesting to meet and learn from others experiences. I wish you well and keep in touch. Others down the road might benefit from your experience since not much is know about this disease.
MoLu