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Old 09-03-2003, 04:48 PM   #1
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looney HB User
Unhappy Neuro Dentist Won't Make Me a Splint

Dear All,

I was recently evaluated by a neuro dentist for TMJ. Although we all agree I have TMJ and it is causing me a great deal of muscle spasm in my face, head, and neck, he is refusing to make me a splint unless I get all sorts of things done.

I'm willing to get a Panorex (whatever) and any other x-rays needed, but due to my severe auditory problems, I cannot do a tomogram or TENS right now. I have really, really bad (I mean life-altering, reduced quality of life) tinnitus (ringing in the ears) and hyperacusis (sensitivity to sound). I developed these auditory problems originally when I came off a benzodiazapine medication (Klonopin) too quickly. It became many times worse after a noisy MRI I had done 6 months ago.

Because my auditory problems are so severe, I had to leave my career that I loved, the master's program I was in, and I have hired a sitter part-time for my 2-year-old because he shrieks so much of the time, and my ears just can't handle it. I am getting treatment for this from a very good audiologist, who is advising me to avoid loud noises of any kind because they can make me permanently worse. Well, due to my collapsed tolerance to sound, even moderate sounds seem very, very loud to me. I've lost 40% of my sound tolerance. I do not drive unless I have to because the road noise is too loud. I cannot do normal things like go into shopping centers, restaurants, or to my kids' activities due to the noise levels. Wearing ear plugs is contraindicated as it will only increase my sound sensitivity in the long-run.

Anyway, I'm working on my sound tolerance, but it is a very long process for healing and a full recovery is probably a little too optimistic. Treatment takes up to 24 months.

The tomogram machine makes loud noises when the chair moves, and it's too loud for me. They let me listen to check it out, but I know in my heart it's too loud. Also, I do not want to do TENS to get fitted for a splint. This is due to the fact that it is based on neuro-electrical stimulation. When I came off Klonopin, every muscle in my body twitched like crazy. My hands tremor. I still have the tremoring in my hands and the twitching in my face. This is after I've been off Klonopin for 10 months. Benzo withdrawal is very severe and protracted for me. But the idea of having anything electrical going on near my ears or on my face just does not seem to be worth the risk to me. The dentist does not seem to be able to tell me how TENS could affect the auditory and neurological problems I already have.

I have listened to doctors before and many times against my better judgement. I almost died from taking only one SSRI pill a year ago. I had a serotonin reaction to it. Then, I was put on Klonopin in the hospital to calm down the serotonin syndrome. I was only on it for 3 months and was assured it was "safe". Well, I went through the most horrible hell on earth trying to stop taking it, and I was so sick I had to quit my job. It wouldn't stop. I'm 10 months off of it and I'm still having neurological problems from the withdrawal including severe muscle spasms all over my head, neck and back. So the doctors told me to get an MRI for that, which ended up destroying what little of my auditory system was still working after the withdrawal hell.

You can see why I am so hesitant to just go ahead and do whatever I'm told to do any more. I have bad TMJ as a result of the muscle spasms from withdrawal, and I am in a great deal of pain daily from this tight jaw. But I have to consider the fact that my auditory system is damaged and my current quality of life is so poor from that.

My question to you all is:
Do you think that it is 100% necessary to have both a tomogram and TENS in order to get fitted for a splint? The dentist is telling me that my splint won't be fit right if I don't get the TENS done.

I just don't know what to do at this point, and I'm agonizing over whether to risk further hearing problems in order to get the splint made. I would rather get a splint made without the tomogram and TENS, but with just regular Panorex and normal x-rays and then to go for physical therapy. I'm hypersensitive apparently, so medications are out, and I'm not feeling good about the TENS either. Also, my insurance may not cover the TENS or the tomogram. I'm waiting to find out about that.

Oh, I hope some of you have thoughts on this. TMJ is rough as it is, let alone having more problems on top of it.

Looney

 
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Old 09-03-2003, 05:36 PM   #2
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TiffanyAnn HB User
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Quote:
Originally posted by looney:
Dear All,



My question to you all is:
Do you think that it is 100% necessary to have both a tomogram and TENS in order to get fitted for a splint? The dentist is telling me that my splint won't be fit right if I don't get the TENS done.


Oh, I hope some of you have thoughts on this. TMJ is rough as it is, let alone having more problems on top of it.

Looney
Hi Looney:
I am presently in a splint made for me by my orthodontist. My orthodontist does not do any of the things you have listed. I did have an MRI but I had that done prior to seeing him because I had figured out that nobody would probably treat me without one. But he does not use the TENS unit. He did do some x-rays before I had the splint made but I don't think I had the ones you are speaking of because you mentioned noise when the chair moves and I did not have that done. Anyway, what I'm trying to say to you is that it is absolutely possibly to get treatment and have a good splint made without the use of the TENS. My orthodontist is very good. I have been in this splint for about 5 weeks or so now and I am doing very well. Most of my symptoms have subsided. My jaw does not pop every time I open my mouth, in fact it rarely pops anymore. It used to pop every time I opened my mouth. I have not had any killer headaches since I got my splint. I was having terrible killer headaches EVERY day. My jaw has not locked at all since getting the splint. I feel like an entirely different person now. I was in terrible agony all the time and truthfully I was on the verge of suicide before finding this orthodontist to treat me. So, the answer to your question is no, you absolutely do not have to use the TENS and every little thing he says to be fitted with a splint that can help you. I know that many on this list have been helped by the TENS but the truth is that it may not be for everyone and if it is going to cause you more stress then it's definately not worth it. I don't know what kind of a financial situation you find yourself in but if you can you might want to get a second opinion from someone else, maybe someone who is not totally hooked on the absolute neuromuscular way or no way. Because I am living proof that a person does not have to use a TENS or have tons of expensive x-rays to be helped by a good specialist who knows his field and feels comfortable enough in it that he is not scared off when his patient has a mind of their own. I know I asked many questions to my orthodontist. He appreciated that I had questions and took an active interest in my treatment. I think it is possible for you to find someone who is confident enough in theirself that when a patient tells them what they know about their own body (since we live in them 24/7) they don't become offended and act as if they are God and you an idiot. I know exactly what you mean about not following doctors advice as if they know it all. I have had more than my share of experiences with these total wind bags.
Tiffany


 
Old 09-03-2003, 05:41 PM   #3
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looney HB User
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Tiffany,

Thank you so much for your response. It gives me great hope. I too have killer headaches every single day. My forehead feels like it is frozen, and it hurts just to look up. Oh, would some relief be nice. I know what kind of pain you speak of because I also don't feel like I can live with this indefinitely. My quality of life is so poor right now with all the pain and auditory problems.

Thank you, and I'm so so glad to hear that you're getting better. That's wonderful.

Looney

 
Old 09-03-2003, 05:45 PM   #4
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Looney,

Neuromuscular splint is based on finding the most relaxed lower jaw position. Unfortunately, the way they know how to take tense muscles and the lower jaw to the relaxed state is with the TENS. Alex

 
Old 09-03-2003, 07:22 PM   #5
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DianeTMJ HB User
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Hello Looney-
When I had my tomogram done, I did not sit in a chair. I stood up. The machine was very quiet. The process took about 10 minutes. There are different Tomogoram units out there.
In regard to the tens unit. Looney it does not stimulate the nerves but the muscles. I had extreme ringing in the ears when Dr B put the tens unit on me and it was fine. It wasn't ringing but screaming. And the slightest noise would really freak me out.
Why don't you ask the NM dentist if you could try the tens unit out, on a real low setting. It isn't like a regular tens unit at all Looney.
If that doesn't work, then you may need to seek a different treatment plan.
HOpe this helps
Diane

 
Old 09-04-2003, 04:55 AM   #6
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Cymy Sue HB User
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looney,

Have you tried a general Dentist who treats TMJD? You would more likely get help without all of the tests you've mentioned going this route.

With muscular problems, many Dentist will try the NTI.
(I don't remember if you've tried it or not)
Sometimes it will help, and if it doesn't, some Dentist use what happens (while you wear the NTI) as a diagnostic tool. I just recently heard of this on this board about my Dentist. Since then, I've read that many Dentist do this.

Dentists who treat TMJD use several different methods of checking the jaw position, bite and many can tell what's going on with a physical examination.

I know this may sound primitive compared to other methods being used now, but if it works, it works.

My Dentist does not use all of these tests. He's pretty good with diagnostics without them. The splint I'm currently wearing is to give the joints some support and primarily to relax the muscles.
He did know my condition, but it had been 6 years since I had an MRI, so I don't think he used that information for the design of my splint.

He did a physical eaxm and listened to what I told him. The splint is working wonders for what should be a "Hopeless Case".

I believe somewhere there is someone who will be willing & able to help you without the tests you've mentioned.

They have designed splints for over a quarter century (and much longer, I'm in the quarter century group) without these tests.

Good luck & I hope you find the Provider you need to help you,

Cymy Sue

 
Old 09-04-2003, 07:35 PM   #7
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Ouch-ear-pain HB User
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Sorry to hear about your situation! You can always find another neuro dentist if you like. But who knows maybe he is correct. Alot of them bareley know anything though so I would be carefull. Meanwhile I hope your mouth get's better and you can hopefully get a splint!

 
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