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TMJ Disorder -TemporoMandibular Joint Message Board

TMJ Disorder -TemporoMandibular Joint Board Index

I feel so sorry for you. Not pity, just understanding.
I started having awful face pain in my 20's, too.
I had bad headaches all my life, and then the joint pain started. First, they thought it was sinus, then they thought it was my wisdom teeth. They were impacted, so they had to be surgically removed. The OS told me that something was terribly wrong. He had found very small bone fragments and other "foreign tissue" deep in my gum tissue. (It was pieces of my disc & slivers of my condyle) This was about 1978. I was sent to an orthodontist who diagnosed TMJS and put me in braces. This ortho was an authority on TMJ, he had already written a book on it. Nobody else at that time had ever heard of it or if they had did not know a lot about it. For 10 years, I wore braces & splints and then I had 2 surgeries in 1988. All of this was to correct my bite. They were not doing MRI's on TMJ's then, so they did not know that they were causing more damage. I only had shreds of disc and all of that trauma destroyed the rest. In 1990 I had to have bone grafts, my teeth were just falling out. In 1992 I had open joint surgery, they put in ear cartilage to replace the disc. I was almost "pain free" for 2 years. Then the ear cartilage started to shred and in 1997 they took it out & left nothing except bone rubbing bone. (Whats left of it anyway)
I had to have a uterine Hysterectomy in 1984, I was 32. I did not have any problems after that... But, I had to have my ovaries out 5 years ago. They were removed because of gigantic cysts. It was a blessing from God. There was a small pre-malignant tumor inside one of them. It would have never been detected until it was too late. My Gyn says I would be an "ovarian cancer statistic" by now. So even though " surgical menopause" is awful, I have found a natural "compounded Estrogen replacement" and am doing better. AND I DID GET A GIGANTIC BREAK.

I know this is long, but I just want you to know that I have been in some kind of pain for the majority of the last... for most of my life. YOU CAN MAKE IT.
There was no pain management until about 5 years ago. Dr's would only give you pain meds about a week after surgery. I've taken so much Tylenol, I can't believe I have a liver left.

I got in to pain management 5 years ago. It helps during the worst of times, but it does not cure the problem. I've been in & out of the program since then, I get tired of "living on medicine".

The shooting pains I have are due to damage to the trigeminal nerves. They know this happened during surgery. However, it seems that I had a lot of burning & stinging right over the joint area before the disc surgery. What was left of my disc had slipped out bilaterally and was bunched up right under the skin. This happened with my own disc and then again with the replacement.
I read your posts and I want to tell you something that will help, I know how hard it is.
Try everything you can to relax.
Do everything you can not to hurt your joints.
I know you said money is tight, but theraputic massage of my face & neck has helped me a lot. 30 minutes here is 25$. I gave up some other stuff to be able to go weekly. A knowledgeable therapist can get the muscles to relax and that is the cause of a lot of the problems we have.

I just want to stress to you that there is always hope. You can make it through more than you realize.
I also have a bad back (no surgeries) and Interstital Cystitis (basically, chronic bladder pain with no
cure). I've had 13 surgeries since I was 14, 7 due to TMJD.

If someone had told me that I would have all of this "stuff" 25 yrs ago, I would not have believed it.
I guess knowing the future would not be good.

I know you are in an awful misery now, but I believe that the research being done and the fact that a few Dr's are starting to turn their practice to TMJS & TMJD, it won't be too long until there is a regulated treatment protocol and there "WILL" be Dr's who understand this disease and all use the same methods of treatment & pain management.

Until then, take care, don't give up, and if it's any comfort, due to the information available & the people who post their experiences on this board & others, you won't make the mistakes that the ones before you did.
Cymy Sue

P.S. I have probably seen it, but I'm a little forgetful. What exactly is your diagnosis & what, if anything has been done?

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