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TMJ Disorder -TemporoMandibular Joint Message Board

TMJ Disorder -TemporoMandibular Joint Board Index

Hi all, just a fellow TMJ/TMD sufferer living in Denver, Colorado, trying to navigate the confusing waters of getting help when no know seems to actually know anything. I have to be honest, after reading some of the stories on here, I feel bad even complaining about my situation, but I need advise. Here's my story....

I've been dealing with TMD for about 3 years now. For a long time, every new doctor told me they could "cure" my TMJ.....I stopped believing that a while back after many failed procedures. I first found out I had a problem, like many, after going to an ENT with sharp pain in my left ear. There was no trauma, no answer to explain why I started having this pain. I've been a teeth grinder my entire life, I can remember my cousins waking me up when I was a kid saying that it sounds like I was chewing on nails....but I also did that for 26 years without any issues with pain.

I didn't take any action after finding out about the TMJ (which I now wish I had!), until meeting another girl that had been seeing a dentist in my area for TMJ as well. This dentist told me I was a perfect candidate for equillibration and that it should fix the problem with a few sessions of using a TENSing system to find my "correct" bite, then adjusting my teeth to fit together as such. This did make the swooshing noise I'd developed in my ear go away, but it actually left my jaw feeling very confused about what my bite actually way. I also had a night guard made by this dentist, which never did anything.

After this failure, I decided to start thinking a little more alternatively. I've had really bad pain in my right shoulder blade area since before the jaw pain began.....I started to think that maybe it was all related, so I found a chiropractor. He said he'd have me all better within 3 months! I started seeing him twice a week, never with any relief, so I also started seeing a osteopathic doctor once a week in conjunction. When I still wasn't getting relief, I added in an acupuncturist. At the end of the 3 months, nothing had changed, so I stopped seeing the chiropractor and decided to consult with a different osteopath and began doing physical therapy. Finally, someone that wanted to figure out the WHY of my pain. He ordered X-rays and an MRI (of course, my insurance denied the MRI.) When the X-ray came back with my bones looking weak, he became concerned about osteoporosis.

The next chapter begins. From the look of my bones on the X-rays, we were able to get my insurance to approve a DEXA scan. The doctor asked me to stop the physical therapy until those results came back. Thankfully, I don't have osteoporosis, but the results did show osteopena (the beginnings of osteoporosis). I started to feel hopeful again, that at least I was getting some sort of answers. He recommended me to a TMJ specialist that he said should be able to order an MRI. This took forever to get approval of, as the insurance still said there was not enough "proof" that I had tried to deal with the TMJ.

While waiting to get the MRI, I began a muti-session procedure to push antiseptic and steroids into the joint, without having to do injections. I also had a new splint made that only went on my front teeth, instead of the back teeth. I can't remember the name of the processes with the steroids, but it felt like it only made things worse, as did the splint. After I finally got the MRI results back, the severity of things really sunk in. It showed both discs breaking down and out of place, some arthritic changes to my right TMJ, and severe osteoarthritic changes to my left jaw joint, including a lovely point in my bone that it constantly stabbing me (that explains a lot)!

At this point, the dentist told me I'd tried all of the more conservative approaches and that he believed surgery would be my only hope, so he sent me off with a referral to 2 surgeons.

.......this brings me to where I am now. Surgery was never going to be an option for me, early on, I did a lot of read about how unsuccessful surgery was for TMJ. After seeing how terrible my bone looked though, I started to think, what else would work? The bone is deteriorating and will just continue to do so if I DON'T have surgery. I don't know what to do. I'm in pain all of the time, though I RARELY take pain killers. I have tried all sorts of muscle relaxers though, believing that my muscle tension have something to do with the pain...also to no avail. I definitely have a problem with clenching, I am very cognizant of it when I am awake, but I wake up every morning in so much pain. I know I'm still grinding as well, my boyfriend finally noticed (he's usually a very heavy sleeper). I think it must be related to stress, because I had very low pain levels while in Europe for 2 weeks, but I don't feel like I lead a stressful life. I have a job I love, I don't work on deadlines, I have a lot of love and support around me, I really have nothing to stress about...other than this damn TMJ.

So, the question becomes, to get surgery, or to not get surgery? If I don't know why I developed TMD in the first place, won't I end up in the same place eventually? The biggest fear, what if it makes things worse? Another fear, if I don't, won't my jaw just continue to get worse? Which surgery is right? (At this point, I've only been able to get into one of the surgeons for a consultation, who said we could do an arthroscopy, but that he doubted it would help the left, my more painful side, at all. He's real recommendation was jaw joint replacement surgery on the left joint). Is there another option out there I just haven't thought of? I am going to try rolfing, but the consensus at this point seems to be that nothing is really going to help because of the deterioration in the joint.

I'm willing to do whatever, I am willing to travel wherever within the US, I just want to not think about this every other second anymore! I'm only 29, I still have so much life to live...I do not want to live it this way. I would greatly appreciate any advice. Thank you all.

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