By Mrs A on Saturday, June 03, 2000 - 03:53 am:

I have a lot of problems with my jaw. I wake up every morning with pain and
a headache and neckache. I am limited to what I can eat because of my jaw. I
have been bounced around to different doctors and dentists. One just said there
is nothing wrong with me, it is in my head. He didn't want to see my xray that
shows osteoarthritis in the TM joint. My jaw locks and dislocates.

I know there must be a link between this and EDS/HMS. Does anyone else have this
problem. What can be done? What do you take for pain?

Signed,

Desparate &. Frustrated

By Greg on Saturday, June 03, 2000 - 03:54 am:

Mrs. A,

I have had TMJ problems for a few years now, that got worse after an accident a year ago. It clicks, cracks, and goes off to the side when I chew, and also causes me
a good amount of pain. YOu may want to have a specialist take a look at your neck also. I have been told that an upper neck injury can effect your jaw greatly. Go
straight for some acupuncture is my best recommendation. Also, ask your dentist for a TMJ specialist. I know there is one in Boston, MA if you are near there. If
this doesn't work, seek help form a doctor that practices prolotherapy. And, if all of this doesn't work, there should be a surgery for you to stop at least the
dislocations. Good luck !

Greg

By Donna on Saturday, June 03, 2000 - 03:54 am:

I have EDS III and TMJ. Surgery is NOT the answer for everyone, but I have a wonderful maxilofacial surgeon who replaced the disc in my joint, then realigned my
jaw. I did not have surgery until I could no longer open my mouth enough to eat. Various splints and medications from my dentist helped until then.

By Marcy on Saturday, June 03, 2000 - 03:55 am:

I was interested in your comments re:TMJ because I've been suffering greatly from jaw problems for the last 4 mths. I can hardly open my mouth and chewing is so
painful that I've resorted to babyfood. It doesn't help that I have EDS (Hypermobile). How much has your jaw problem improved? What helped the most? You
mentioned that you knew a TMJ specialist in Boston, may I have their name? Also if you're comfortable recommending a good acupunturist and prolotherapist in
the Boston area I would be grateful? Do you know if prolotherapy is done for jaw joints? I'd like to have it done for other joints, anyway. Thanks.

By Marcy on Saturday, June 03, 2000 - 03:55 am:

Donna: You mentioned that you had surgery on your jaw. How much better are you since the surgery? Would you be willing to give me your surgeon's name? I
may be a candidate for surgery and I have a friend who definitely needs surgery. Thanks.

By Tanya on Saturday, June 03, 2000 - 03:56 am:

I have been treated with a technique called Neuroskeletal Dynamics (NSD) - a joint alignment treatment. It's fantastic. It has especially helped my TMJ subluxations.
I have since become a practitioner myself. Unfortunately only in Australia and England. Hope this info can help.

By Jo on Saturday, June 03, 2000 - 03:56 am:

I had the disc in my jaw replaced twice and am now having tremendous difficulty again. I don't want another surgery if it is going to "break down" again like the first
two. To replace the disc, did they do a dermal graft? Or, did they put in some type of prosthetic disc? How did he realign your jaw? What state was this surgery done
in? Do you mind telling me yoru physicians name? I live in Montana.

By Robin on Friday, October 20, 2000 - 05:13 pm:

I've had troubles with my jaw clicking and popping out for at least 20 years. I see a chiropractor who is also a naturopathic physician. He does wondrous things in my mouth by massaging the muscles and tendons behind my molars. Also he says I need D'Pantothenic Acid (a form of vitamin B) to help stabilize my joints. Before seeing him it wasn't uncommon for me to wake up with my jaw "popped out". Now I could count on my hand the number of times it's happened in the past few years. So now I get to work on the *other* problems . Anyone out there got a poppy sacro-iliac?
cheers
Robin

By El on Friday, October 20, 2000 - 07:24 pm:

I've got EDS Hypermobility my jaw locks in all sorts of ways. I saw a chiopracter and he made it worse. Everyone is so diffrent. I know that I am going to be faced with surgery. Honestly I can't wait. If it doesn't work oh well it can't make it any worse. =)

By claudia on Thursday, November 30, 2000 - 07:50 pm:

I have type 3 EDS and TMJ syndrome. I have actually had my wisdom and last molars pulled to try to relieve the pressure as my dentist said I have abnormally large molars. It didn't help. I had a closed lock for about 3 months. What is terrable is that my dental and medical insurance exclude any treatment having to do with the jaw joint. The only thing I have found to help is jaw massage, anti inflamatories and soft food. Yet it still hurts every day. sometimes I use benzocaine on the skin inside my mouth closest to the joint for a little relief. And I hold my jaw in place when I eat. (firm pressure with one finger just in front of my ear). Good luck to anyone with this painfull and wholly annoying problem.

By Jennifer on Saturday, December 16, 2000 - 04:31 pm:

I've had TMJ for over ten years now, ever since I had braces. Fortunately, I don't have any pain with it. A chiropracter was able to help me, but I had to go about twice a week to maintain it. I don't bother going anymore since my jaw doesn't hurt, it's just annoying.

By jane on Sunday, January 21, 2001 - 05:22 pm:

I also have EDS and TMJ. I have not had any pain or migraines from the TMJ in 11 years. I did get daily debilitating headaches until treated with a jaw splint- also my jaw would like shut periodically. It was way out of place (2.25 inches to be exact.

My prosthodontist made a mouthpiece that held my jaw in its proper position while I slept. It seems to have eventually grown into the correct placement. I have not had TMJ symptoms since 2 weeks after starting with the splint. I also only wore the splint for 2-3 years at night.

By Geri on Monday, January 22, 2001 - 11:47 am:

I've also found (from sleeping on one side mostly i think) that my jaw moves out of place to the left most mornings and I need to pull it as far down as it will go to get it go back correctly. Trying to eat when I've first got up is really difficult because the muscles 'cramp' and pull the jaw to the left again. This is v. annoying!

By miranda hungerford on Monday, November 18, 2002 - 05:48 am:

Referring to the message left by Tanya in June 2000.

I have EDS and a severely crooked lower jaw with what looks like major depletion of the lower jaw bone down the side of my face below the earlobe, in particular.

I have to have another discussion with the dentists about this this week, and would really appreciate some advice from Tanya or others as to what this might be called professionally and what can be done about it. I obviously would like to avoid surgery because of the healing problems with EDS.

PLEASE HELP!!

By Patty on Tuesday, November 19, 2002 - 08:58 pm:

Miranda,
My daughter was able to get a splint for her lower jaw that has helped align her jaw. She wore it all the time the first month and has gradually been able to take it down to just nights. You need to see an top notch TMJ specialist. I would recommend a dental school for the best, but you want the faculty member, not the students.