Would love some help/answers before I have a huge Temper Tantrum!!!
Ok......I am very angry right now! Have you ever seen a 30 year old woman throw herself in the floor and kick and scream?? lol!
Let me give you a little background so you'll understand my frustrations. First off I have an HMO. We have to go to a large clinic/hospital that actually owns the insurance company that we have. To make matters worse my husband is the art director at the insurance company! I've been on the side of things with no insurance, so for a long time I was just thankful to even have it. Well, of course you know...they don't cover anything to do with TMJ. And why is that?? I understand that is the norm but I want to understand why? How is that condition different from any other medical condition that you SUFFER from? How do things like that get changed?? I just don't understand why that is OK? So, we definitely can't go anywhere else unless we are to pay for it 100% out of pocket and any way i slice it there is just no way that can happen.
My problems w/ TMJ started a few years ago when i had a lot of dental work done (after not having had insurance for several years! lol!) Anyway, it started completely on my left side. The right side never hurt. After about 6 months of trying to live with it, my primary sent me to the oral maxiofacial surgury department to see a doc. I guess this is the only department there that would make sense. Is this the kind of docs you see? He measured how far i could get my mouth open, which wasn't anywhere close to normal, and did some other manipulative tests. Anyway he had me get a nightguard made. He told me to make sure and get a "hard" one, but when i went to the dentist they said "no way." Their oppinion was that my bite is so off that it would be so thick and uncomfortable that I wouldn't use it. I wasn't sure what to do but i went ahead and went with the soft one. I was also prescribed flexeral (sp?) I had been prescribed it by my dentist before for the jaw also. I was originally supposed to take it like 3 times per day for 2 weeks, 2 times per day for a week, and then once per day for a week. Well, I just took it as needed because I'd already tried that 3 times per day thing when my dentist gave it to me and there was just no way. I was completely knocked out all day long. Now my tolerance to it is up so i could easily take it 3 times a day.
During all of this, we've spent the past couple of years shelling out huge bucks to try and diagnose why I have reocurring kidney pain every month (for the past 8 years) We even paid out of pocket to see a specialist at the Cleveland Clinic. So instead of going back to the oral maxiofacial guy like I was supposed to after trying the nightguard I decided to try and concentrate on one thing at a time.
The nightguard really makes a huge difference for me. It doesn't eliminate my problem by any means but I certainly see a difference if i fall asleep and forget to put it in.
It has been one and a half years since my appt. with the oral guy. What has changed since that time is this. All of a sudden...the left side stopped hurting and the right side started, and it's been that way ever since. It was instantaneous and the left side has never hurt since then. I have actually gotten so bad that i couldn't even swallow easily. This is not the norm, but i am in pain every single day. The other thing that has happened is that I've started having migraines that I believe are from my jaw. I always wake up with one (when i get one) and it is always on the side of my head by my jaw. There has been twice in the last month that my husband has had to be late to work so he could get the kids off to school. I've ended up staying in bed all day long. I do take imitrex for it but it doesn't seem to be all that effective??
Since it has been a year and a half my doc sent me back to the same dept only today i saw a different doc. I took along my nightguard in case he wanted to see it. He started about by saying "ok it looks like my partner saw you a year and a half ago" I told him i had the nightguard yadayadayada and he started smiling and asked me where I got it. I told him the dentist made it. Him.."what dentist"...me..."i actually don't remember his name.." He has me get in the examining chair and he's still got this stupid smile. So I finally asked him what was so funny...He says"Those splints are very controversial!" I said "well you're partner is the one that told me to get it" Him.."Well my partner is certainly allowed to disagree with me" Then he gave me a speech about how they are not intended for long term use and that anytime someone sticks something between you're teeth you are going to chew on it. I told him that it makes a huge difference for me in the way that my jaw feels. So he says that my xray looks fine and there isn't anything he can offer me because he's a surgeon. Hmmm.....I asked what the different options were and asked him if he was saying that i just have to live with it?? He told me it would get better eventually. I asked him if i was just at the wrong doctor and who was supposed to treat it? He said well....you're doctor could treat it...for that matter his PA could treat it.
So what are my options? Nothing? I just live with it? That doesn't seem fair or right? Does everyone here have something that shows on an xray? I evidentally didn't, which didn't bother me, because i know something isn't right whether it shows on an xray or not. He kept coming back to the fact that my left side got better on it's own. Well i disagree with that. To me it should mean something that the left side stopped hurting and the right side started hurting at the very same time. i asked him if it were possible that something shifted in there? He just wasn't interested. So now i don't know what to do. I wish i lived in a bigger area with better insurance.
So can anyone explain anything about TMJ to me given what I've said so far?
I didn't have anything show up on my x-rays either, in fact I am wearing a splint from a neuromuscular dentist. He didn't see anything abnormal on the x-ray but I had a tomogram on the 2nd and will see the dentist on the 20th. By that time he will see the results of the tomo which clearly showed that I have arthritis in the tm joints. In B.C. where I live, tmj is not covered by either BC medical or our extended health coverage, so have had to pay for all treatments out of pocket. Now I am going to try to see if I can get some coverage because it is arthritis. What difference does it make whether it is in the elbow, knee, back etc or tmj?
I can't understand why such a debilitating problem is so misunderstood and why there is so little treatment for it!
I'm posting firstly out of sympathy, I share your frustrations and am just now feeling aghast for various reasons at the supposed treatment offered by some surgeons, dentists/specialists for TMJ. I am beginning to believe many are paid for almost nothing, they don't answer questions, they don't cure or even improve our tmj 'disorders', they don't give us referrals to people who could perhaps help more than they seem able to.
I do think any healthcare professional not prepared to discuss, answer questions, attend very carefully to your concerns, is not a good person to be seeing. If the dr you just saw doesn't seem interested in your symptoms could he really be trying to help you? He is lucky you can actually tell him about them and give him clues to work with, or maybe he would prefer to be a veterinarian treating animals who can't talk, then he could dismiss them all the more easily, ouf.
My tomograms apparantly haven't shown anything out of the ordinary as far as I know, but I still have a cracking right joint and spasms. Like yours my tmj really began to become apparant after extensive dental work in January. How does your bite feel to you now, perhaps you could do something to help that? I certainly think you can improve and get well (I absolutely believe this), but need to take the right steps to do so and finding out what they are is the hard part. I just read a good online book on tmj by an apparantly very good tmj dr, Dr Richard Goldman, maybe having a look at this could help you to answer some of your questions?
I don't have answers re the insurance, this just seems to be another very unfair issue, particularly when you consider that the tm joint is the most complex and important joint in the body.
Hi absmom:
I'm so sorry to hear about all that you have gone through and continue to go through. HMO's suck but it seems that these days all insurance sucks. Many on the board have gotten their insurance to pay for their TMJ treatment because their dentist listed their diagnosis as MPD rather than TMJ. For some reason insurances seem to pay for that diagnosis. It makes no sense at all because TMJ is not about teeth, it's about joints. Joints like an elbow or knee. Some of us on this board have been writing letters to our congressmen, the Oprah show, anyone who will listen to us trying to get the word out about how awful TMJ is and how terrible those with it are treated by the so called "professionals". It is absolutely maddening beyond words. Had that doctor come in with that stupid smile on his face I probably would have slapped him silly. I am so sick of arrogant jerks like him.
I don't have any dental insurance so I am having to pay for my treatment out of pocket. It has been a terrible stress on us. It makes me irate beyond words.
This "surgeon" you saw isn't all that knowledgeable because if he had been he would have ordered an MRI since x-rays don't show soft tissue but of course since he is a HMO he gets a bonus for saving the company money.
Please keep searching and asking until you find someone to help you. Don't let them get by with giving you the shove off. If you ask enough someone will finally assist you. Keep fighting, you are worth it.
Tiffany
Would love some help/answers before I have a huge Temper Tantrum!!! 
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