Thelma-Louise
08-30-2006, 09:00 PM
Well even though I just started to work with another dr (my 5th in the last 2 yrs) and he is in the process of making me upper and lower over dentures (my teeth are prepped for crowns) that will also function as a splint since the back teeth will basically be flat planes, I had previously made an appt with a neuro/facial pain specialist at Columbia Presbyterian in NYC almost 2 months ago and just came back from the appt.
He diagnosed me with Oromandibular Dystonia accompanied by acute myial (sp?) facial spasms and pain. Is this just fancy wording for severe tmd or tmj? I did a little research when I came home and the symptoms are pretty much like those usually used to define tmj. Anyone familiar with it?
He said I definitely needed to be treated with botox injections which initially paralyze the muscles and then allow them to relax. It needs to be done multiple times until the muscles forget the contractions they are currently doing. Only at that point would any type of teeth or splint work to keep or maintain the muscles in a relaxed state. It kind of makes sense since I have already tried 4-5 different splints and at least 5 different sets of overdentures with no relief whatsoever. He said his patients usually do not see much relief until about 5-6 monthly injections, some take as long as a year, but all eventually get better. The longer the muscles are in a constant contraction the longer it takes to get them to relax and go back to a normal position. I have been dealing with this for 2 1/2 yrs so I guess I still have a long journey ahead of me. He said he has a 99% success rate which I have heard from other drs as well, but also said this includes patients that simply stop coming for treatments - so he is not sure whether they were successful or not (bells and whistles went off in my head - like "warning Will Robinson - danger" - if any one can remember Lost in Space, which is how I often feel, btw.) He said I would have to go back to PT as well. He did not pressure me at all - said to take as much time as I needed to decide if I wanted to try it. If I did want to give it a try, he would want to do another MRI on the brain, neck and spine since it has been more than 2 yrs since they were done and he wants to see if any other degenerative changes have developed since then, given that I have not had the proper treatment.
So any thoughts, comments, or input on all of this. Since I have tried everything that has been suggested I am inclined to try this as well - I simply am at my wits end from the constant pain and desperate for even just a little relief. Thanks.
He diagnosed me with Oromandibular Dystonia accompanied by acute myial (sp?) facial spasms and pain. Is this just fancy wording for severe tmd or tmj? I did a little research when I came home and the symptoms are pretty much like those usually used to define tmj. Anyone familiar with it?
He said I definitely needed to be treated with botox injections which initially paralyze the muscles and then allow them to relax. It needs to be done multiple times until the muscles forget the contractions they are currently doing. Only at that point would any type of teeth or splint work to keep or maintain the muscles in a relaxed state. It kind of makes sense since I have already tried 4-5 different splints and at least 5 different sets of overdentures with no relief whatsoever. He said his patients usually do not see much relief until about 5-6 monthly injections, some take as long as a year, but all eventually get better. The longer the muscles are in a constant contraction the longer it takes to get them to relax and go back to a normal position. I have been dealing with this for 2 1/2 yrs so I guess I still have a long journey ahead of me. He said he has a 99% success rate which I have heard from other drs as well, but also said this includes patients that simply stop coming for treatments - so he is not sure whether they were successful or not (bells and whistles went off in my head - like "warning Will Robinson - danger" - if any one can remember Lost in Space, which is how I often feel, btw.) He said I would have to go back to PT as well. He did not pressure me at all - said to take as much time as I needed to decide if I wanted to try it. If I did want to give it a try, he would want to do another MRI on the brain, neck and spine since it has been more than 2 yrs since they were done and he wants to see if any other degenerative changes have developed since then, given that I have not had the proper treatment.
So any thoughts, comments, or input on all of this. Since I have tried everything that has been suggested I am inclined to try this as well - I simply am at my wits end from the constant pain and desperate for even just a little relief. Thanks.
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luvtocamp
08-31-2006, 09:42 AM
Sounds interesting. I have heard of people getting botox for muscle spasms. My tmj is muscle related too and the splint did not work for me. It sure makes sense if the muscles are in a state of contraction and spastic that the bite is always going to be off.
Is there any negatives from getting the botox and trying it? I mean botox does wear off so I shouldn't think there'd be any negative side effects.
It sounds like his success rate is good. I guess I would be really tempted in giving it a try after everything you've gone throught already. It's expensive to keep getting new teeth made and still not getting better. I know my bite changes throughout the day from my muscles.
It sure is a bad thing isn't it, we don't chew because it hurts and causes muscle spasms and sense our chewing muscles are not getting the proper exercise they get worst and worst.
Hope someone on this board has tried this so they can be of more help.
Is there any negatives from getting the botox and trying it? I mean botox does wear off so I shouldn't think there'd be any negative side effects.
It sounds like his success rate is good. I guess I would be really tempted in giving it a try after everything you've gone throught already. It's expensive to keep getting new teeth made and still not getting better. I know my bite changes throughout the day from my muscles.
It sure is a bad thing isn't it, we don't chew because it hurts and causes muscle spasms and sense our chewing muscles are not getting the proper exercise they get worst and worst.
Hope someone on this board has tried this so they can be of more help.
Suzq222
08-31-2006, 09:59 AM
The doctor does have a good point and it sounds like it does make sense, but I also feel your skepticism having seen many professionals that "know what the problem is". I also have a muscular problem but have not tried botox. Have you tried trigger point injections? I had a series of them last winter and I think its the same idea as the botox. It works to relax the muscles. Unfortunatly it was only temporary for me. I'll ask the ortho I'm currently seeing what he thinks of the botox.
GoodThings
09-06-2006, 01:07 AM
If you simply want to relax your muscles, why not just go to a neuromuscular dentist and have him/her use some sort of TENS unit on you. That should relax your muscles.
GT
GT
Thelma-Louise
09-06-2006, 08:02 PM
The tens unit actually made me feel worse. It triggered more tongue and jaw spasms than I could tolerate. He also used it to help determine my bite - but for some reason I ended up with the teeth on one side touching much more than the other side and the more he adjusted them the worse it got.
GoodThings
09-08-2006, 03:03 AM
From what i understand, TENS should relax your muscles and it shouldn't make you worse off. Did the doctor show you a before and after graph of your muscle activity? If your muscle activity is still going crazy after the TENS, then your doc isn't doing it properly. That's what i understand but i didn't experience a TENS first hand.
GT
GT