absmom
10-13-2003, 08:07 PM
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?
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?
Sponsor
kami-girl
10-13-2003, 09:02 PM
Hi,
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!
Grace
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!
Grace
Isobelj
10-13-2003, 09:50 PM
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.
Isobel
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.
Isobel
TiffanyAnn
10-13-2003, 10:44 PM
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
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
kami-girl
10-13-2003, 10:58 PM
In BC,Canada they consider myofacsial pain dysfunction the same as tmj, go figure!
Grace
Grace
Cymy Sue
10-14-2003, 06:53 AM
Hi,
I'm terribly sorry to hear that you have been so badly "MISTREATED", but it is common among TMJD sufferers. You have apparently seen Doctors who don't have any idea of what to do for you.
As far as your Insurance problems, very few Insurers will cover any kind of TM joint treatment other than Surgery. This has been my experience for over 25 years. I have very good Medical Insurance and they have allowed several surgeries on my face and TM Joints, but afterwards would not cover any follow-up care if the "TMJ Code" is used. I was sent into Pain Management after my disc were removed and this was covered due to Surgical Damage to the nerves in my face. (Trigeminal Neuralgia) Pain Management coded TMJ Treatment is denied.
For many years, about 35 from information I've seen, the NIH and extension agencies have been given grants and funds to determine specifics on diagnosing, treatment and even a common name for this disorder/disease, and they have not accomplished very much that would help us as yet. Determining that this disorder is a Medical Problem because it does affect our joints and not a Dental problem, has been on the aggenda. So far, most Medical and Dental Insurers are still able to deny Coverage, because "IT" does not fall under "Anything" they cover. This is due to "NOTHING" being done by these agencies.
Many people are helped by Splint Therapy which can be administered by Dentist, Othodontist and other TMJD Specialist. Splints to help with joint problems in most cases are not designed to correct Dental Problems. They help Joint problems. In many cases, after the TMJD is under control, some people do go on to have Dental work done. In many cases, they do not.
The first line of Treatment for TMJD recommended by Authorities on TMJD and Care Providers who treat this disorder, regardless of the method or technique, is Splint Therapy. However, since the Splint goes in your mouth, Medical Ins. is able to avoid paying for it.
I assume if the "SPLINT" had to be Surgically Implanted into your head, they would pay. However, if it didn't work or became dislodged or broke apart, they most likely would not pay to have it removed. (Sorry for the sarcasm, but if you've read many of the posts here, I'm sure you understand.)
If a soft nightguard seemed to help, it is reasonable to assume a Hard Splint designed for your condition would help. I have had several surgeries that left me in quite a mess and with no disc. I am wearing a Splint now, that is very thin, I have no discomfort and TMJ symtoms and problems I've had for 25 years have been relieved. It is designed to relax the muscles and support my joints.
It sounds like this Doctor you've seen and my last Surgeon reside in the same hole and don't have a clue about TMJD and Splint Therapies that "can" and "do" help. He sounds like so many of the "ARROGANT" http://www.healthboards.com/ubb/jester.gif 's that so many of us have gone to for help and left feeling like we've almost been violated.
I don't know if you will be able to get any help with Insurance Coverage for your TMJD problems. We all fight that battle.
There are Dentists and other Specialists who can help you. Sometimes, they are hard to find.
If you wanted to post the general area that you have access to, someone on the board may can make a suggestion. Word of mouth is sometimes the best way to find a good Doctor.
Many times when TMJ problems are left untreated, you develope muscular problems. Sometimes, the shifting of pain from one side to the other is caused by muscles trying to adapt to the joint not functioning properly. This does not mean you may have some terrible problem that can not be treated. It means that you do need some type of intervention such as a splint to stop whatever is going on.
I wish I could give you more help or information, but finding someone who is interested in your condition and treats TMJD with more than a "Stupid Smile" is the best advice I have.
Cymy Sue
[This message has been edited by Cymy Sue (edited 10-14-2003).]
I'm terribly sorry to hear that you have been so badly "MISTREATED", but it is common among TMJD sufferers. You have apparently seen Doctors who don't have any idea of what to do for you.
As far as your Insurance problems, very few Insurers will cover any kind of TM joint treatment other than Surgery. This has been my experience for over 25 years. I have very good Medical Insurance and they have allowed several surgeries on my face and TM Joints, but afterwards would not cover any follow-up care if the "TMJ Code" is used. I was sent into Pain Management after my disc were removed and this was covered due to Surgical Damage to the nerves in my face. (Trigeminal Neuralgia) Pain Management coded TMJ Treatment is denied.
For many years, about 35 from information I've seen, the NIH and extension agencies have been given grants and funds to determine specifics on diagnosing, treatment and even a common name for this disorder/disease, and they have not accomplished very much that would help us as yet. Determining that this disorder is a Medical Problem because it does affect our joints and not a Dental problem, has been on the aggenda. So far, most Medical and Dental Insurers are still able to deny Coverage, because "IT" does not fall under "Anything" they cover. This is due to "NOTHING" being done by these agencies.
Many people are helped by Splint Therapy which can be administered by Dentist, Othodontist and other TMJD Specialist. Splints to help with joint problems in most cases are not designed to correct Dental Problems. They help Joint problems. In many cases, after the TMJD is under control, some people do go on to have Dental work done. In many cases, they do not.
The first line of Treatment for TMJD recommended by Authorities on TMJD and Care Providers who treat this disorder, regardless of the method or technique, is Splint Therapy. However, since the Splint goes in your mouth, Medical Ins. is able to avoid paying for it.
I assume if the "SPLINT" had to be Surgically Implanted into your head, they would pay. However, if it didn't work or became dislodged or broke apart, they most likely would not pay to have it removed. (Sorry for the sarcasm, but if you've read many of the posts here, I'm sure you understand.)
If a soft nightguard seemed to help, it is reasonable to assume a Hard Splint designed for your condition would help. I have had several surgeries that left me in quite a mess and with no disc. I am wearing a Splint now, that is very thin, I have no discomfort and TMJ symtoms and problems I've had for 25 years have been relieved. It is designed to relax the muscles and support my joints.
It sounds like this Doctor you've seen and my last Surgeon reside in the same hole and don't have a clue about TMJD and Splint Therapies that "can" and "do" help. He sounds like so many of the "ARROGANT" http://www.healthboards.com/ubb/jester.gif 's that so many of us have gone to for help and left feeling like we've almost been violated.
I don't know if you will be able to get any help with Insurance Coverage for your TMJD problems. We all fight that battle.
There are Dentists and other Specialists who can help you. Sometimes, they are hard to find.
If you wanted to post the general area that you have access to, someone on the board may can make a suggestion. Word of mouth is sometimes the best way to find a good Doctor.
Many times when TMJ problems are left untreated, you develope muscular problems. Sometimes, the shifting of pain from one side to the other is caused by muscles trying to adapt to the joint not functioning properly. This does not mean you may have some terrible problem that can not be treated. It means that you do need some type of intervention such as a splint to stop whatever is going on.
I wish I could give you more help or information, but finding someone who is interested in your condition and treats TMJD with more than a "Stupid Smile" is the best advice I have.
Cymy Sue
[This message has been edited by Cymy Sue (edited 10-14-2003).]
absmom
10-14-2003, 01:11 PM
Thank you all for the replys. I've learned more from you in 12 hours than i did from paying $240 to the smiling surgeon yesterday!
I would be happy to write my congressman or anyone else for that matter. Just point me in the right direction and my pen will start flowing! Sometimes i find this country so frustrating to live in. When i think of all of the unfair issues here and that there doesn't seem to be anyway to affect change unless your some huge corporation with mega bucks. That is not what we are supposed to be about. Although it doesn't sound like this is covered in Canada either. I haven't understood for a long time how it's ok to let someone live like this!
I live in Illinois. Have any of you heard of the University of Illinois in Champaign? Well, I live very close to that town. I have a call into my dentist but i don't think he's going to have much info to offer as he's known i have this problem for a long time. Maybe I should ask my daughter's orthadontist?
I would be happy to write my congressman or anyone else for that matter. Just point me in the right direction and my pen will start flowing! Sometimes i find this country so frustrating to live in. When i think of all of the unfair issues here and that there doesn't seem to be anyway to affect change unless your some huge corporation with mega bucks. That is not what we are supposed to be about. Although it doesn't sound like this is covered in Canada either. I haven't understood for a long time how it's ok to let someone live like this!
I live in Illinois. Have any of you heard of the University of Illinois in Champaign? Well, I live very close to that town. I have a call into my dentist but i don't think he's going to have much info to offer as he's known i have this problem for a long time. Maybe I should ask my daughter's orthadontist?
Cymy Sue
10-14-2003, 02:17 PM
Hi again,
I'm not familiar with Illinois and know it's a big state. I bumped up a Post to "Puzzled" from Elaine.
She has given a Doctor's name that she has met and trusts. She's been around the block with this mess several times too many, also.
Maybe a starting place for you to find some information or recommendations.
I just happened to remember this post. You might do a search on the board with "Illinois" as your search word and come up with some older posts that I may not have seen with some information on good & bad Doctors in your area.
Cymy Sue
I'm not familiar with Illinois and know it's a big state. I bumped up a Post to "Puzzled" from Elaine.
She has given a Doctor's name that she has met and trusts. She's been around the block with this mess several times too many, also.
Maybe a starting place for you to find some information or recommendations.
I just happened to remember this post. You might do a search on the board with "Illinois" as your search word and come up with some older posts that I may not have seen with some information on good & bad Doctors in your area.
Cymy Sue