It's NOT TMJ!

[Sue]

I have had some issues with my "jaw" and thought I had TMJ, as the symptoms were similar as far as I could determine.  I posted about this a while ago.  So, dentist did some stuff, referred me to physical therapy, which I did.  Went through all of that, but in the meantime my family doctor had gotten a referral for me to see a Dr. up at OHSU who is a specialist.  A Maxillofacial specialist with degrees and education experience as long as my arm.  If he couldn't figure it out, nobody will.  So, I went today and he did his exam and did the x-ray (along with his student resident lady doctor person as it's a teaching hospital) and he says, No TMJ, never had it, no arthritis...nothing to do with my jaw bones, and everything to do with the last crown that was put on and a sensitivity in the pulp of that tooth and the weakened muscles in my face and the trigeminal nerve because of the AN.  So it is related to the stupid AN.  It truly is the gift that keeps on giving.  But, relieved I don't have to have jaw surgery.  Good Grief.

The TMJ like pains have lessened over time, so perhaps that will just disappear altogether.  Cross your fingers.

[saralynn143]

I hope your pains disappear, Sue. Fingers crossed.

Interestingly enough, I went to visit the dentist just today and brought up my recent jaw pain. It hurts like crazy when I yawn, I can't open very wide and can no longer pop my jaw at will. In my case, she thinks it is a flare-up of TMJ, which I have had for some time, probably related to tightness in the muscles from nerve regeneration. She pinched a muscle near my jaw and asked if it hurt. I said no and she pinched slightly further up the muscle. I about jumped out of the chair.

I go back next week to see if they can adjust my night guard and meanwhile, nothing chewier than hamburger. And valium twice a day.

[Sue]

Wow, we both did the dentist thing today.  Hope yours is resolved soon.....

[Evltwin]

I had the same problem.  Was fitted for TMJ mouth piece.  Before I paid for it I went to PT.  Turns out that my problem was related to a muscle spasm in my neck which caused the jaw pain.  Looks like the AN surgery caused some neck and shoulder spasms.  I did some PT which included stretching and no more pain.

[saralynn143]

Getting my mouthpiece tomorrow. Since TMJ predated my surgery, I'm sure it's a combo of the two and the night guard can only help.

[saralynn143]

Picked up my night guard today, wearing it now. It feels very strange and will take some time to get used to. Makes me salivate a lot - gross! But hopefully it will help the jaw pain. If not, off for PT I guess.

[ilsemor]

I had my AN removed almost 2 years ago, July 6.  Last October I started having problem with my jaw, it got hard to open my mouth, took ibuprofen for almost a month, lost of it, then I stopped it, then I got huge headaches and then became migraines, jaw problem lessened, but still there, then I went to see a neurologist he said it could be TMJ.   I went to see a TMJ doctor, asked me to get  a mouth piece called spacer, then two months later said I needed another for my upper teeth and later  another one for the bottom again, I then realized he was trying to get my teeth straight which weren't that bad.  When I told him  that my only need was to get rid of the headaches and the jaw problems he said I should see a speech therapist to help me with my lips, then I realized he didn't know what he was talking about because I don't have issues with speech, it made me so angry I stopped going, then went to see another dentist who scraped my back teeth so they wouldn't grind and suggested I got a mouth guard.  The bad thing is when I sleep I can't close my lips completely so the thickness of the mouth guard makes it worse so I gave up using it.  The good thing is that the headaches went away and my jaw is better.

By reading some of the postings above I can tell that for me was also the neck.  It gets messed up with stress and causes the jaw joint to get messed up.

My conclusion is that because I only chew on the opposite side of the AN, that joint overworks and gets messed up.  I was told not to eat things that make me open my mouth too big, like hamburgers.  Gum is a big no-no. 

It is sad to see how some doctors don't know and we have to find out on our own, we know our bodies better than they do.

[Kaybo]

I've never had problems with TMJ (knock on wood) but Sara, do you think you could send some of that Valium my way??   

K   

[Denise S]

Hmm, been watching this topic because I have been diagnosed with TMJ about a year after my AN surgery.   I am supposed to be getting a bite guard too.

ILSEMOR:   my question is...when you mention your headaches went away and your jaw is better, is that due to using the mouth guard?  or did you just get lucky and your pain subsided?   thanks!

Denise (MI)

[saralynn143]

ilsemor - is your TMJ on the opposite side of your surgery then? Mine is on the same side.

Kaybo, I'll share the joy, love, peace, happiness . . . but not my valium. Sorry.

[Suu]

Has anyone been told by their doc or dentist that the TMJ worry is caused by sucking a straw all the time?
Has anyone else told their doc or dentist that they suck through a straw?

I did, and found out that my jaw creaking/cracking is the same as for someone who smokes low tar cigarettes!  The harder one sucks the worse the jaw gets. 

Now I'll stop laughing long enough to sign off before I write anything else LMAO

Cheers,

♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu

[ilsemor]

Hi, the headaches went away without using the mouth guard and without the ibuprofen, I couldn't use it because its thickness prevents me from sleeping..too thick and my mouth can't close so it caused another problem.  I don't know about you but my lips don't close completely because of the facial paralysis. Also, my jaw problem is on the opposite side of the AN.

I forgot to mention that I have been taking glucosomine for the last 6 months, almost since the time the headches stopped, glucosomine is good for joint so maybe this is helping me with the TMJ.  I spent about a $1000 trying to deal with the jaw problem and then the headache, it wouldn't hurt if you try it.  The mouth guard or spacers are not covered by insurance.

Gook luck! 

[Debbi]

Hi all,
I would just like to comment quickly on the mouth guard debate.  I was diagnosed with TMJ long before my AN adventure and have worn a mouth guard at night for years.  After the AN surgery, the TMJ got really bad and the mouth guard I had was no longer fitting properly (due in part to the facial paralysis).  As Ilsemor said, it's difficult to impossible to close your lips over a mouth guard if you have facial paralysis.  That said, I went to my dentist and got fitted for a new guard, this one that sits on my lower jaw, rather than upper.  Still couldn't get my mouth to close at night (and it still doesn't close all the way) but the mouth guard gave me huge relief from the pain.  I am not saying that a mouth guard is the solution for everyone, but it sure has worked wonders for me.  if I don't wear it for a few nights, I feel the right side of my jaw starting to get tight and painful. 

Good news is that no one is sneaking into my bedroom at night to take pictures!  I am sure I am quite a site with my mouth hanging open and a plastic lined eye mask over my eyes.   

Debbi

[ilsemor]

I think we are getting this almost figured out, I guess the thing to do is to ask the dentist if you can get a piece that is not as thick as a mouth guard or as thin as a spacer.  While we are at it, maybe somebody can get really creative and get a mouth zipper made, wouldn't that be the solution?  Hey, maybe that's my new invention!

[saralynn143]

I was going to wait until I had been wearing my bite guard for a week to report, but since there is so much activity here the past couple of days, I'll go ahead and say that I can already tell a huge improvement in the tightness of my jaw. The joint is still quite tender, but I am no longer reduced to near tears when I yawn. I think I am about at the point of dropping the daytime dose of valium and just taking it at night.

My guard fits over the upper teeth, and yes, it is difficult to close my lips. I think it would be difficult even without facial paralysis. I also wake up several times a night because it just feels weird. The hygienist tells me that will pass.

Does anyone else have a lot of difficulty speaking when the guard is in? My husband gets quite a kick out of talking to me first thing in the morning.