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TMJ Disorder -TemporoMandibular Joint Message Board
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Old 09-06-2003, 01:23 AM   #1
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Cymy Sue HB User
Question DianeTMJ.......Any Luck?

Hi Diane,

After I finally got the abbreviations right, were you able to find any information?

I haven't had time to look for some other info I had copied.( my Mother's having some health problems again )

I don't think I found a whole lot of anything very helpful, but I intended to continue looking.

Again, I am sorry for the mistakes.

Cymy Sue

 
Old 09-06-2003, 11:17 AM   #2
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DianeTMJ HB User
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Hi Cymy Sue -
I went to their site, trying to glean through the information. Just nothing new, so I emailed them and I got a response. They still have no clear direction for TMD patients, they are where they were back in 1996. I emailed back and asked a couple of basic questions. Such as, how come there are no controls over treatments. More and more people getting surgeries that do not work, controls over cost. I even let them know that I know of several TMJD people that would LOVE the opprotunity to sit down with them and help brainstorm in guidelines to be given to each DR/Dentist/Hyg. out there about how detect TMD in patients, even without symptoms. That the simple test they do to see if the joints pop simply is not enough as my joints did not begin to pop until the perio made a night guard for me. If nothing else a stop gap measure for those people like many of us that were lost in the endless circles of dentists and drs before someone FINALLY put two and two together.
I will not hear back from this person until after the 11th as they are now out of the office... arrrgghhh.

What saddens me Cymy Sue, had I read their article before finding DR B, I would not have gone to him. I do not know what I would have done, but just the simple comment by the NIH in regard to repoistional splints would have stopped me dead in my tracks in finding treatment. Thank goodness, I saw it after the fact I guess. My dentist has brought me back from nightmare of TMD.
I am clueless, I also specifically what the issue is with repositional splints, as they must have something bad on them, long term for them to make that statement.... or... have the "old school" people paid big bucks to lobbyiest to taint other treatments????
So, oh well I guess. I can only continue to go forward Cymy Sue with my treatment, to go backwards would not be an option for me.
Thanks for the info and I hope you are having a great day
Diane

 
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Old 09-06-2003, 06:16 PM   #3
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Join Date: Jan 2003
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TiffanyAnn HB User
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Hi Diane:
I would love to know who you are writing to if you are able to give their e-mail address to us so I can also begin writing to them. I have written to the senators who's names I have and asked them if they are still working on TMJ issues and told them I am a TMJ sufferer and I know of many others who are willing to work with them. I have not heard from them yet. I wanted you to know I had not forgotten. I am going to list their names now so if you guys want to write and ask maybe it will get them moving a bit if they begin to get several e-mails regarding the problem. The names I was given are Senator Tom Harkin,
Senator Arlene Specter,Ralph Regula, David Obey.
Tiffany

 
Old 09-06-2003, 11:08 PM   #4
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Posts: 470
mdla HB User
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I just dont understand why no one in the med community is taking the time to investigate enough so even if they can't cure us right away they could find ways to make life more tolerable with tmj or at least awknowledge that we are in a great deal of pain. Last week my disability insurance company sent me a letter saying despite the fact that Ive been to the ER 4 times in the last 4 months with either lock jaw or fallen over from dizziness and all the other things, migranes, inner ear pain......my condition should not keep me from doing my very demanding 55 hour a week or + job that requires a lot of talking. Its like if we cant see the problem we can ignore it right. I wish they could at least put some money behind educating people about TMJ disorders.
__________________
m.s.

 
Old 09-08-2003, 07:53 AM   #5
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DianeTMJ HB User
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Good morning Tiffany!
Wow! Did you see the post from Cheryl about the Ga study on repositioning splints! That is great news!
Okay, Cymy Sue did a post "NIH, NIDCR,JJAMD & TMJDIWIG". I went to the link she provided: [url="http://www.nidr.nih.gov/tmdiwg/"]http://www.nidr.nih.gov/tmdiwg/[/url]

I looked for a way to contact them by e-mail. I sent them an email and actually received an email back. However, the one that responded to me is not gone until 9/12, but perhaps there is someone else that responds to questions Tiffany.
Here is what they said in their message back to me:

"Unfortunately, I don't have a real good answer to your question about the use of stabilizing splints. I can tell you that we're about to publish a new version of our TMD publication, which has just been reviewed by "the experts," and they have not changed their thinking about using conservative treatment since the 1996 report.

In a 1998 article on oral splints the conclusion states, "Despite the nearly universal prescription of oral splints in the treatment of TMD or bruxism, the quality of the evidence supporting the mechanisms of action suggested for their presumed efficacy is still questionable." Until such time as evidence-based studies can substantiate the efficacy of oral splints, our researchers will continue to recommend conservative, reversible treatments".

I have emailed the person who emailed me back to see if I can share their email address, if they say yes, then I will request from the moederator if it is okay to post.

Tiffany, thank you for your list of senators. I will be composing a letter to them today.
Thanks and have a good day!
Diane

 
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