Chronic Pain

Stacy; hey, they did not wire me and i don't know why. My mandible is moving about so that I have to wear the awful elastic bandage anytime I have to get in the car, plane, train, etc... even in bed some nghts.
I wish they had wired me as this is incredibly difficult and painful.. I get repeated black-eyes from the movement (weird, huh?).
Any ideas for me while I continue in this position: I may be here for a LONG time, after all. Thanks. By the way, Stacy; do you know if I can actually put my own pic on the forums instead of the queen (I think it IS Queen Anne, but really, would prefer one of my own).. thanks again, Anne

BIG COMPLAINT NOW!!!
OK; so, I did have my 13-ye-old, stock, all-metal, joints REMOVED, along with a LOT of bone (like 1" x 5 inches, including fossae, is what I am missing) on the 30th of July, or, about 4 weeks ago.
How's this for a complant? I received a call from the surgeon's office and was told, as I am on Medicare (which they accept assignment on), I will NOT, EVER, be getting new joints made for me or, certainly, seated. According to the assistant at the surgeon's office, "NO joint-maker ia giong to make joints and accept ONLY what Medicare pays..; (I) would have to find a way of paying, up=front and in-full, for these joints, approximately thirty-grande"!!! Of course as I am disabled, I have absolutely no way of doing this. So, yep, I am sitting here, trying to decide just what to do as I know that I cannot continue to live in this horrendously painful situation.
How's that for a big complaint? And, by the way, I am, supposedly, NOT the only patient of ths doctor, in particular, who will not be having joints done..; I am, however, the only one who had her joints totally removed!!!

There needs to be more doctors that specialize in this field. I live in VA and had to travel to Fl. for my first surgery. It was expensive, time consuming and frustrating to travel so much for one surgery. hopefully in the future there will be more doctors that focus on this disease.

AMEN! however, there are a LOT of doctors who profess to be specialists inthis field and they are actually injuring more patients than they are helping;
case in point: me!!!
Prehaps there needs to be more medical funding for specialists to be trained BETTER in this field!

no one on my plan treats tmj..... bite gaurd comes out at night. so bad right now that when talking, painful to say any words that reequire opening mouth .

I just dont think anyone knows anything about TMJ out there. Even the so called specialists been to way to meny. I have had three surgeries already. I had the Proplast put in back in the 80s that was recalled then they did bilateral with the plastic and the Brock. So out cane all the nut ,bolts and screws. Then came the bone rafts and the bilateral Christiesen ,and fassas. The So called specialist said every thing is fine took lots of xrays looks good no food for six months. I still had some pine and headaches but not as bad. Then we moved. The headaches got worst. I went from one TNJ specialist to another they just got worst and worst. They took xray after xray say everything was fine all in my head. I was always in the a emergency room with very bad migraines. We move again found a faimly Dr went to see him with a bad migraine he took the time to fine out why I was getting so many gave me pain meds . Oder a MRI with dye and found out that a bone graft did take and one of the impants has now gone into my brain like some shoot me with a bulletand it is inbeded very deep. They are going to take it out one day but they are waiting till I cant take the pain any longing. so a warring xrays dont show it all to those who have implats get MRI PLEASE.

Sylvia;
I understand your complaints, as I have also been through a lot of same stuff; my bone grafts did NOT "take" in there as was no vascularization of the bone. So, I also had the Christensen joints (mine were "stock"; were yours?).. and, after 13 years, I finally got to have them removed. This was about 2 1/2 months ago and I still have no joints and am missing a LOT more of the mandible than wouuld have happened had anyone actually looked at a scan. However, I am just a bit confused about the scan/MRI? I know that an MRI cannot be performed on you or me when the metal is in there... why so many doctors only do xrays... I know this as I had an mri just LAST week and, as I have still a LITTLE bit of metal, the tech did NOT want to run the mri with me as the pain from the flesh and bone burning while in the machine (due to the high-density metal alloys) was incredible! I have a plate in my sinus, behind the nose-job which was unauthorized, a stairstepchin impant (again, something i did not want) and a broken screw-head below my left eye, loose, missed when the joints were removed.
So, I am really wondering just what type of scan was done for you! When I had the stock joints in there, I could NOT get ANY imaging place to do an MRI; they did, though, do ct-scans, including 3-d ct-scans.. is this what they did for you? If so, please bear in mind that metal STILL, even on a 3-d scan, obscure the view of the actual bone or what's left of the bone, so that it may look like the metal is in your brain while it may not be. Certinly,I HOPE it is not! But, considering the anatomy of the entire area, including the fossae (plural), it wuold be incredibly difficult for the implants to migrate to the brain; thankfully. And while the ct is a MUCH better tool for visualising the problems than an xray (why they put us through this I will never know), it is still lacking in info! It was not until after my metal was removed that the actual enormity of the problems in my head were realised! So, again, please do not put too muh stock in there being metal in the brain! I don't think that any ct-slice would be able to prove or disprove whether or not it's anywhere close to the dura.. and, I hope it is not. And, again, I worry that this is what wsa told to you... I guess it is pssible; just VERY highly unlikely!
Still, I do know that having loose or ill-fitting joints is an incredible source for PAIN and, surely, migraines. I had a year-long migraine until a while after the joints were removed!
So, now, I sit here, waiting for the new prostheses to be finished. I cannot eat ANYTHING, unless it is liquid or, on a GOOD day, purreed.. So I DO get what you're saying about pain! Do you have a pain-doctor or a pain-clinic you can rely on? This was my one saving grace.. the pain-doc. Once we got to the point where I cold finally get out of bed, most days, going through the initial sx wsan't as much hell as it could have been! But, this, waiting and pain of no joints and the muscles shrinking, and the diseased bone that was, for whatever reason, left in there, is really still pretty awful. In fact, I have had to go on an even stronger pain-med than I had ever taken, other than immediately following surgery.. in the hospital. And, it looks like I will CONTINUE on this med until the surgeon has time to implant the prostheses specific to my situation!
I guess, basically, I was saying: I feel ya. And, I totally agree that xrays are basically worthless in diagnosing anything to do with these joints when he metal is in there too! Of course, is there had been migrating in any odd place, it should have shown up on an xray, too. I had a fight with one radiologist who said that there was nothing wrong with the joints in my head, although it was very obvious that the screws had backed out, that one screw was broken, and that there was a major gap between where the bone and the joint were supposed to be attached! This confirmed my theory that the joints were totally loose, and I do mean both the lower and upper part of the joints or fossae.. I hope you get to meet up with a surgeon who CAN and WILL consider helping you! Anne

So, my big complaint for the tmj-world, is that there is a LOT of mis-information out there. For selfish reasons, my biggest complaint is that I am still without joints and it looks like I may or probably WILL have to wait for even more MONTHS to have the new joints, which are almost ready for seating, to finally be seated!! This, surely, makes me complain! I'll be going throuogh all of he kids birthdays and holidays without joints and without being able to eat-- anything!!! This stinks.

Dizzy dizzy dizzy. And the money ,the travel, anxiety