Chronic Pain

So what is your plan now, Alex? I hope that you are trying to stay positive, hard though it may be, as it is better for your overall health.

What we need is somebody famous advocating for these TMJ treatemnt centers. I know Burt Reynolds had a major jaw problem. But if he was going to try to help, he would have done it by now. Many people I know have tried to contact Oprah Winfrey - no response yet. It would be great if 60 minutes would do a documentary on it, and suggest some way of making it better for tmj disorder patients. I was thinking youtube as well, but if you search tmj there's only a bunch of advertising remedies, and some crazy young people popping & cracking their jaws (on purpose!). Just some thoughts.

Ess

I have no idea what I'm going to do now. I need some place that has an orthodontist and oral surgeon under one roof. The only places I know like that are the dental schools, and I haven't had much luck with them.

OK, that's sounds like a good start. I have heard that Dr. B Stack and Dr. E Gregory in Falls Church, VA are an excellent team. I have no idea if that is anywhere near you, or if they handle cases like yours. But I think there's got to be many good teams out there. Surely many of them work together, even if not under one roof, as they must need each other often. But of course, you want the best, not just any team. I hope you can find them, Alex.

Ess

Hey, y'all.. well the joints were removed and life really sux now..
I never did answer the "what would I do differently" question posed by Ess; I was probably in CT, waiting to have the joints taken out and simply could not go "there".
As I think, now of how things went; as I look back at the pictures, I think, back when my opening was at about 50, I would have stopped complaining. However, back then, there were NO pain docs or pain clinics. There was no "Patient's Bill of Rights". Surgeons, as most of us know, did not and do not continue to provide us with medications for pain-relief. IF I had been able to find any doctor who was willing to assist me with the pain, I would have finished with the surgeries prior to having my joints removed. I think, since my mva in 1988, the BEST surgery, for me, was the temporalis muscle graft (bilateral) and, probably, had times been different, I would have been able to survive, with my own joints, for a much better time.. amount of time and quality of time.
As it stands, I am in the most horrific pain I have ever dealt with; the bone cement is killing me! It has been burning and did, a few days ago, crack, loosening the cheekbones from the cranium; my eyes are blackened from this.. don't know for sure, but am fairly positive that I am reacting negatively to it.
Please, if I can prevent any of you from pushing for that surgery, I hope I can. I have been through EVERY possible surgery; some more than a few times, and really, I am so much worse off than ever!

Alex, alex..
I'm SURE you think I'm mad at you. I am not. I have not problem with arguing a point and not being angry. Perhaps it comes from growing up in a family of politicians and putting 2 -ex's through law school. Honestly, though, I'm not mad at you.
Now, what you say about dentists CAN be true. However, there are some dentists out there who actually continue their schooling evan as they practise and are truly hoping to help with TMJ stuff. Keep looking, ok? You may find just what you need. I know it looks bleak; believe me!
I, right now, feel as if I am done and my joints are gone! I HOPE that I will end up with new joints but this is not a sure thing, as of today. As of yesterday, it was a sure thing that I would NEVER be given the joints I've been working so hard to obtain. How's that grab ya? Hon, it would have been the death of me, for sure.
So really, if you can get to it, try and find anyone to help. I have family up in your area and, if you'd be willing to travel to CT, like to Yale, you may find exactly what you need! Really!!!

No, it's not that. I haven't been around much because I haven't really been pursuing treatment the last couple of months or so. I've been lurking, reading shareposts and stuff. Nothing really to contribute other than my little rant against dentists there.

I did see one of the doctors today on impulse since the pain is unrelenting. To my complete surprise he laid out my situation without any prodding on my part. I've got a surgical problem but no one will touch me. Finally one of them gets it.

He referred me to a doctor I've heard about from several people (including folks I know offline) who is known to handle challenging cases. They can't see me until December, but at least there's a next step versus me stewing in frustration. It could very well be another dead-end, but I suppose there's zero hope if I just give up.

It's crazy what patients have to go through to make progress with this. Everyone here has had to jump through hoops to get anywhere. It's unreal.

Hey, Ales.
Glad you may be getting some help. Where is the doctor? I am without joints, as you may know, and don't know if they will actually be putting some in me or not...
Can't believe I'm in this situation.. it's a mess and incredibly painful...
send me a pm and let me know about your new doc, ok?

OOPS.. my typing is awful! Meant to say, ALEX.. yeesh! Of course, it does not help that I'm sitting in the dark trying to do this!
Let me know what you found out, ok?
I really do hope that whomever this is will help you.... I really do know how it is!
Anne