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Old 09-09-2009, 03:28 PM   #1
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bassclari HB User
Power struggle - what would you do?

My tmj dentist appt went exactly as I expected. He is dead set against me trying botox for the dystonia that I have been diagnosed with. The neurologist says it is the only option. I had ultrasound done at the dentist which didn't touch it or change anything at all. But I am in so much pain! I took Tylenol with muscle relaxers last night hoping for a couple of hours rest, but it didn't help. I'm having a hard time lately sleeping, or functioning anytime during the day after 10am because I'm just done in from exhaustion and pain.

He has assured me that eventually the splint therapy in conjuction with alternative therapists (cranio, psychotherapy, massage, and goodness only knows who else will be suggested next) will work. Maybe the splints will need to be changed (all I heard was "cha-*****", more money for new molds and splints, more money for therapies I can't really afford, I can't claim through benefits, and that no one can say for sure will help...botox has been proven to help dystonia, and is covered under the benefits). Apparently it takes 2 months for every year of tmj dysfunction to get better. We are talking about a 40+ month commitment! I'm not even at month three!!

I tried to explain that the scm muscle is pulling my facial muscles downward, and creating a tilt in my head. He agrees that it is probably the cause of the tmj, but he is totally against the botox. I tried to explain that maybe 1 or 2 botox treatments might help the tmj treatment, and maybe put everything into remission. No go, he wants me to go natural, no meds, no botox, and "allow the body to heal itself". If I don't address the dystonia, will the tmj dysfunction ever truly be corrected? If there is a possibility it is the cause of the tmj, won't it eventually go back to being dysfunctional? I find it hard to believe that going to a massage/cranio/pyscho/whatever-therapist will make my brain decide to let up on the muscle.

So, what would you do? I get the strong impression that my choice is botox or tmj.

Why does "Western" medicine and "Alternative Therapies" have to always be in battle. Can't everyone just get along and work together? Why does it have to be one or the other?

Thanks for listening again!!

 
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Old 09-09-2009, 10:14 PM   #2
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Re: Power struggle - what would you do?

I too was diagnosed with dystonia by a neurologist when my tmj started a few years ago and was told to try botox. After some research on the condtion and its recommended treatment I decided to leave it as one of my last hope options. Somewhere along the way I found an article that stated dystonia is often diagnosed through testing of the cerebral cortex - something to do with the loss of myelin around the sheath that cover the nerves - not sure of the medical or technical terms however - and when I asked the neuro about it - he said he didn't need to do such testing - my facial and tongue spasms appeared to be classic characteristical "evidence" of a movement disorder.

I also found an article that stated in some cases dystonia ( I was diagnosed with oromandibular cervical dystonia) could be caused by injury or trauma to the neck - since my tmj symtpoms started with a deviated "yawn" one night (like whiplash or snapping of the jaw) I thought perhaps that injured the based of my neck where the nerves were located. MRIs confirmed my atlas and axis (C1 and C2) were rotated over to the left so I figured that was a possibility as well.

I asked HB members in other forums about it and most said it does work to relieve spasms and pain - it does so by temporarily paralyzing the muscles which are dysfunctioning - I believe the theory behind it is that if they are forced to be dormant or immobilized for a period of time they may eventually heal and at some point return to normal functioning. The affects of botox only lasts about 3 months and then it needs to be readministered. My concern was what would happen if they inadvertently paralyzed my tongue - I guess fear of the unknown kind of made me imagine the worse case scenario.

So I opted instead to work with a cranio chiro who uses applied kinesiology and luckily for me my facial and tongue spasms have decreased in frequency and intensity but it took 2 years of weekly treatments to get to this point.

Of course my dentist was against botox as he is a holistic tmj dentist - but my family was all for it - and you know - even if the affects are temporary - if it helps - then it helps - its no different than any of the other alternative therapies we try that offer temporary relief. There's no reason why you can not do one round of it and then decide if you want to continue or not - most who try it say relief is immediate or within 1-3 days.

BTW - the National Org of TMJ recently issued a warning to tmj sufferers against the use of botox - although I realize you are considering it due to a diagnosis of dystonia - just thought I would mention it.

Last edited by Thelma-Louise; 09-09-2009 at 10:23 PM.

 
Old 09-10-2009, 06:22 AM   #3
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Re: Power struggle - what would you do?

Hi Thelma-Louise! Thanks for answering. I've done research as well, and it is not an easy decision to make, I really don't like the idea of injecting toxins into my body anymore than the next guy would. I just felt so belittled, like a puppet on a string. I had been given an option - which as the owner of body I am entitled to consider - and the dentist made me feel as if it was "it" or him. He was cutting down the neurologist big time. He wouldn't even look at the information I brought. I felt he was making decisions without being informed, without offering me any case studies or stats on cd patients he has treated to "x" level of success, or for that matter stats on cd patients any other tmj dentist has treated, and that is something I have a hard time respecting. He wouldn't even listen when I suggested trying 1 or 2 botox treatments to see if it could get the ball rolling in the tmj healing.

Basically I felt like my cd dx was brushed aside and viewed as just an absolutely ridiculous dx. I've been trying to accept the cd dx, and to have someone not take it into consideration when making treatment plans just seems irresponsible to me. It is what it is, it is part of me, and I need health care providers who will accept and work with that. I agree that there is probably an alternative out there that will work, and quite possibly splint therapy would work as well, but without taking the whole picture into account, how can I be sure that that practioner and the offered treatments are doing to best for me?

Cranio - 1 time per week for 2 years....wow! For me that would be over $10,000 out of pocket! When I think of all the money I've spent over the years, money that we really couldn't afford, on treatments that didn't help, and quite possibly made things worse, I just cringe and want to cry.

Anyway, thanks for your input. I'm still considering my options...my husband and mom said to try the botox and don't say a word to the dentist, just let him think it was all him. I'm flip flopping between that, and firing the dentist and trying to find someone else with experience treating patients with cd. I don't think that not trying the botox is an option. I can't move my head much at all today because the rom is so limited

Thanks again.

 
Old 09-10-2009, 10:06 AM   #4
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Re: Power struggle - what would you do?

Quote:
Originally Posted by bassclari View Post
Hi Thelma-Louise! Thanks for answering. I've done research as well, and it is not an easy decision to make, I really don't like the idea of injecting toxins into my body anymore than the next guy would. I just felt so belittled, like a puppet on a string. I had been given an option - which as the owner of body I am entitled to consider - and the dentist made me feel as if it was "it" or him. He was cutting down the neurologist big time. He wouldn't even look at the information I brought. I felt he was making decisions without being informed, without offering me any case studies or stats on cd patients he has treated to "x" level of success, or for that matter stats on cd patients any other tmj dentist has treated, and that is something I have a hard time respecting. He wouldn't even listen when I suggested trying 1 or 2 botox treatments to see if it could get the ball rolling in the tmj healing.

Basically I felt like my cd dx was brushed aside and viewed as just an absolutely ridiculous dx. I've been trying to accept the cd dx, and to have someone not take it into consideration when making treatment plans just seems irresponsible to me. It is what it is, it is part of me, and I need health care providers who will accept and work with that. I agree that there is probably an alternative out there that will work, and quite possibly splint therapy would work as well, but without taking the whole picture into account, how can I be sure that that practioner and the offered treatments are doing to best for me?

Cranio - 1 time per week for 2 years....wow! For me that would be over $10,000 out of pocket! When I think of all the money I've spent over the years, money that we really couldn't afford, on treatments that didn't help, and quite possibly made things worse, I just cringe and want to cry.

Anyway, thanks for your input. I'm still considering my options...my husband and mom said to try the botox and don't say a word to the dentist, just let him think it was all him. I'm flip flopping between that, and firing the dentist and trying to find someone else with experience treating patients with cd. I don't think that not trying the botox is an option. I can't move my head much at all today because the rom is so limited

Thanks again.
Hello C.,
Isn't it interesting that professionals seem to ignore us or completely belittle us if they don't understand something, or think that it is their way or the highway, so to speak. Maybe you should try to find a tmjd specialist that is well read in Cervical Dystonia, or maybe has patients with the disorder. Don't be too frustrated, I"m not shocked at all with your tmj doctor's response. I can't tell you how many doctors I've come across with his attitude. You just need to find a compassionate and educated doctor that will look at all angles of your case, not just their own opinions. I feel your frustration..
ps--my CST told me of an excellent oestopathic college in canada. She is going to find out what the name of it is for me. Her friend from California attended it, and they have an excellent program for learning CST. People sign up from all over the world to attend school there.

 
Old 09-10-2009, 10:42 AM   #5
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bassclari HB User
Re: Power struggle - what would you do?

Hi J! Thanks, I would really appreciate the info on the oestopathic college. There is a lady not too far from here who teaches CST as well, but I'm not sure of the pre-req's for taking the courses. I believe that alot of them are only open to health care providers.

The dentist's attitude really took me by surprise. But, I've been trying lately to get over my bad habit of doing things to make others happy, and concentrating instead on what makes me happy. Do I see a learning opportunity here? You bet! Obviously I still have something to learn...

T-L and J: How are things for you lately? I'm hoping that things keep getting better and better!

 
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