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Old 09-04-2009, 02:00 PM   #1
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update

Still doing the splint therapy (day and night splints). Still not feeling any relief muscular wise (seriously, this past week has been so bad, I've felt like crying - I'm 2.5 months into tmj treatment). But, found out this week that I have cervical dystonia - a neuro-muscular disorder.

I don't know how the two disorders are related, if at all. I don't know if one makes the other worse. I'm not surprised at the diagnosis (family link), but I'm mad as a bee (still trying to process ). My treatment options are very limited for the cd, but it might help the tmj treatment work better and quicker. But, my tmj dentist has suggested (previous to my neuro appt) that splint therapy can help muscular disorders. I don't see how, if cd is a neurological disorder. The cd dx makes a lot of sense to me when I look back over the years. When I listened to the dr explain which muscle is affected, and how it is pulling down on the muscles in my face, I really wonder if it is causing the jaw to be displaced, therefore causing the tmd. Just a theory, because of course I couldn't think that quickly when I was in the neuro appt.

I'm anticipating a head-butting session with my dentist next week. I'm angry, disappointed that I've spent so much time and money on treatments that either can make cd worse or just not help at all (chiro, etc). Nothing has released the muscles, and I mean nothing, but I kept going back, hoping that "this time" it would make a difference.

What do I try from here for the pain? I've tried it all, meds, heat/ice, chiro, massage, acupuncture, cranio, stretches. Creams, jells, supplements, cold laser, ultrasound. I'm totally at a loss right now.

I know I'm being a downer. Sorry about that.

 
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Old 09-05-2009, 07:03 AM   #2
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Re: update

Quote:
Originally Posted by bassclari View Post
Still doing the splint therapy (day and night splints). Still not feeling any relief muscular wise (seriously, this past week has been so bad, I've felt like crying - I'm 2.5 months into tmj treatment). But, found out this week that I have cervical dystonia - a neuro-muscular disorder.

I don't know how the two disorders are related, if at all. I don't know if one makes the other worse. I'm not surprised at the diagnosis (family link), but I'm mad as a bee (still trying to process ). My treatment options are very limited for the cd, but it might help the tmj treatment work better and quicker. But, my tmj dentist has suggested (previous to my neuro appt) that splint therapy can help muscular disorders. I don't see how, if cd is a neurological disorder. The cd dx makes a lot of sense to me when I look back over the years. When I listened to the dr explain which muscle is affected, and how it is pulling down on the muscles in my face, I really wonder if it is causing the jaw to be displaced, therefore causing the tmd. Just a theory, because of course I couldn't think that quickly when I was in the neuro appt.

I'm anticipating a head-butting session with my dentist next week. I'm angry, disappointed that I've spent so much time and money on treatments that either can make cd worse or just not help at all (chiro, etc). Nothing has released the muscles, and I mean nothing, but I kept going back, hoping that "this time" it would make a difference.

What do I try from here for the pain? I've tried it all, meds, heat/ice, chiro, massage, acupuncture, cranio, stretches. Creams, jells, supplements, cold laser, ultrasound. I'm totally at a loss right now.

I know I'm being a downer. Sorry about that.
HI C. ---No you're not a downer. You have every right to complain about life right now. Don't apologize...When you go to your dentist, ask him if he's ever treated a tmjd case that has cervical dystonia, and if he hasn't, see if he can come up with maybe info for you on the subject, or talk to other colleagues in your area about your situation..2 or 3 heads are better than one, right? Do the same with your neuro. doctor. See if you can find case studies maybe on the internet of patients w-cervical dystonia and tmjd symptoms. I forgot, did I ever ask you if you were near Dr. Brock Rondeau, the tmj specialist? If you are too far away for a consult, see if you can speak to someone @ the office who may refer you or offer some light on your condition. They may have patients who have the disorder w-tmjd. It's worth a shot. I know you are frustrated, you and I have been in splint therapy for the exact amount of time, and I'm not having any let up in my spasms at all as well. I wake up in tremendous pain, and I go to sleep in the same condition. So frustrating. Hang in there...You will get better, this is just the hard part, trying to pick the right treatments and doctors.
Remember---Hot Fudge Sundaes!

 
Old 09-05-2009, 12:16 PM   #3
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Re: update

Hi J. I see my dentist on Wednesday (assuming my oldest is well enough to be in school, he has come down with a cold...I hope it is a cold anyway). I also have a cranio appt, so I get to kill 2 birds with 1 stone. I'm looking for a really good source for info about cd that I can take to the appts, so there is no question what we are now dealing with.

Dr. Rondeau is in the same city as my dentist. I think both are at the same level of experience, but if I can't get straight answers, I might consider having a consult.

Has anyone else gone this long (2.5 months) without seeing any improvement? Are J and I the only ones having difficulty? Any tricks to deal with the pain and spasms? Beside the hot fudge sundaes that is! (And we were in town 2 times the last couple of days, and I completely forgot to stop. Darn!)

 
Old 09-05-2009, 06:32 PM   #4
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Re: update

You are definitely not the only ones!
Cervical things can be caused by tmj too if you have a problem with it.
The splints that I tried didn't work so I didn't wear them. If smth is not comfy within few days, at most (!) it won't make the jaw better- this is MY belief, I am not a dentist. But the tmj surgeon whom I trust said to me not to place the jaw into any position it doesn't want to be. And I like this common sense approach.

If you have tmj muscle spasms try biting on smth on both sides around the canines for several minutes (up to 15 or so). It can be dental cotton rolls or make rolls from paper towels or whatever you can find appropriate.
Canines or front teeth when touching smth will make the jaw separate and not bite on the backs, the muscles relax.

Do you have an open bite?? I.e. do you front teeth touch at all when you bite?
Proper posture helps too. I wish I can find my old messages where I described it all in details together with some exercises.

Did you have any dental work done prior to having the cervical problems?
What's the diagnosis about your tmj? Did you have any tmj tests done?

Last edited by StillHope; 09-05-2009 at 06:37 PM.

 
Old 09-06-2009, 11:36 AM   #5
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Re: update

I'm 100% positive the cervical dystonia is not caused by tmj dysfunction. Maybe tmj is caused by cd, I don't know, just a theory. Dystonia is a neurological disorder, part of the brain is telling the muscle to spasm - in my case it has a genetic link, and I found out that another family member is facing assessment for cd. The "cervical" part of "cervical dystonia" simply indicates the part of the body affected.

Hi Stillhope: no open bite. Posture has been an issue, but I'm beginning to realize that it may not be as easy for me to obtain proper posture - not as long as the muscles are spasmed. Something I found in my search for relief of the pain in my neck and upper back, is that stretches (like the kind the chiro gives you) make the spasms and pain much, much worse. I mean a lot worse! So I have simply avoided exercises.

Dental work: well, the neck/shoulder muscle spasms first started in my teens, and I definitely did not have any dental work (or major dental work anyway, cleanings, yes.) previous to the spasms starting.

I have a tmj appt on Wednesday, and I will talk to the dentist. Obviously, the treatment plan is going to have to be looked at, and adjusted. I'm just not looking forward to the conversation, because he has already expressed his opinions on the possible treatment options (he is against them, and feels that splints can "cure" most problems, but I'm not entirely sure that the splints can re-wire my brain processes. If it can, I'm sure he will make a mint!)

Now that I have a definite dx and neuro treatment plan, I have to decide who to believe and trust. I can't go on in so much pain, especially when I know that there is an option that will (possibly) offer some relief. If the dentist is not going to be flexible in his thinking, not willing to admit that maybe the neuro treatment and tmj treatment can compliment each other, and not willing to do some research (he is totally mis-informed about dystonias - kept talking about Tourette's and MS), then I will need to search for someone with experience (or knowledge at least) of cd. And that means the $ I've spent for tmj therapy is a waste.

It just feels like no one is actually listening to what I say. I actually had a chiro at one point belittle me (I had explained about having an upcoming appt for an assessment for cd), and she said "You don't have cd, don't be ridiculous." How would she know? Do chiro's take neurology classes to be able to make dx like that? I'm getting tired of everyone not believing or dismissing my concerns. One person has been willing to research cd, ask her association members for advise and input, and find out what she can to see if she can make her treatments work for me. ONE person. All the rest just dismiss. I'm just hoping that the tmj dentist won't dismiss me. Can't tell that I'm really dreading that appt, eh. I have my defenses up already!.

 
Old 09-06-2009, 03:41 PM   #6
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Re: update

Quote:
Originally Posted by bassclari View Post
I'm 100% positive the cervical dystonia is not caused by tmj dysfunction. Maybe tmj is caused by cd, I don't know, just a theory. Dystonia is a neurological disorder, part of the brain is telling the muscle to spasm - in my case it has a genetic link, and I found out that another family member is facing assessment for cd. The "cervical" part of "cervical dystonia" simply indicates the part of the body affected.

Hi Stillhope: no open bite. Posture has been an issue, but I'm beginning to realize that it may not be as easy for me to obtain proper posture - not as long as the muscles are spasmed. Something I found in my search for relief of the pain in my neck and upper back, is that stretches (like the kind the chiro gives you) make the spasms and pain much, much worse. I mean a lot worse! So I have simply avoided exercises.

Dental work: well, the neck/shoulder muscle spasms first started in my teens, and I definitely did not have any dental work (or major dental work anyway, cleanings, yes.) previous to the spasms starting.

I have a tmj appt on Wednesday, and I will talk to the dentist. Obviously, the treatment plan is going to have to be looked at, and adjusted. I'm just not looking forward to the conversation, because he has already expressed his opinions on the possible treatment options (he is against them, and feels that splints can "cure" most problems, but I'm not entirely sure that the splints can re-wire my brain processes. If it can, I'm sure he will make a mint!)

Now that I have a definite dx and neuro treatment plan, I have to decide who to believe and trust. I can't go on in so much pain, especially when I know that there is an option that will (possibly) offer some relief. If the dentist is not going to be flexible in his thinking, not willing to admit that maybe the neuro treatment and tmj treatment can compliment each other, and not willing to do some research (he is totally mis-informed about dystonias - kept talking about Tourette's and MS), then I will need to search for someone with experience (or knowledge at least) of cd. And that means the $ I've spent for tmj therapy is a waste.

It just feels like no one is actually listening to what I say. I actually had a chiro at one point belittle me (I had explained about having an upcoming appt for an assessment for cd), and she said "You don't have cd, don't be ridiculous." How would she know? Do chiro's take neurology classes to be able to make dx like that? I'm getting tired of everyone not believing or dismissing my concerns. One person has been willing to research cd, ask her association members for advise and input, and find out what she can to see if she can make her treatments work for me. ONE person. All the rest just dismiss. I'm just hoping that the tmj dentist won't dismiss me. Can't tell that I'm really dreading that appt, eh. I have my defenses up already!.
Hey C--I totally hear ya on professionals not being informed or current on how to treat different dysfunctions. It drives me insane. I totally agree that tmjd doesn't cause cervical dystonia. It's the other way around. I think if your dentist has doubts about anything and really doesn't know how to treat you, or can't answer your questions effectively, you may want to get an opinion from the tmj specialist I mentioned to you on the earlier post. I think his consult fees are around 175$ only, which is pretty reasonable. Also, just to double check your neuro. diagnosis, get a second opinion on that as well. It can't hurt, and you will feel better afterwards if something is concrete.
I also hear you on the fact that you've spent so much $$ already with the current dentist. I'm in the same boat. I have no coverage for anything tmj related, and now since the ENT I saw last summer pegged my chart with tmj as a diagnosis with esophageal spasms, I'm pretty much up a creek as far as it being a preexisting condition on my medical coverage. Yes, you've probably spent a lot so far, but your health is the #1 priority, and you well being. Let it go, and have peace with that decision. A good friend told me that recently, and at first I thought it would be impossible to have that mindset, but when I look at my kids and my family, it's money well spent. Your life and well being are the most important right now. God Bless---J.

 
Old 09-06-2009, 07:05 PM   #7
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Re: update

It seems that you are skeptical about the splint helping the cd. Of course, if you have no tmj/dental problems on their own why spending $$ on dentists?
I'd suggest trying to do research on your own as well as waiting for the specialists to do that.
From my experience relying much on dentists or other specialists "to know it all" might not work well or quick. And you definitely need to get some help and relief from pain.
I feel for you! It's no fun to have the neck, head spasms no matter what the initial reason for them is.

If you find some help, please let us know.

 
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