Jaw problems Watch

Anonymous #1
#1
Report Thread starter 5 years ago
#1
I was diagnosed with TMJ four years ago now and it's really frustrating to live with. I had a surgery 2 years ago and it just made it worse. Now I'm just being referred to physio and pain specialists and surgeons, passed from one person to the next, and having NO success. They tried giving me muscle relaxants, but these just made another problem I have even worse.

Does anyone else suffer from frequent jaw dislocations? And a misaligned jaw? (my teeth literally are aligned like | / bad diagram sorry)

I just really want some relief before they get back to me about the next step, which is meant to be in six weeks. It's horrible and I'm finding it so difficult to live with!

Thanks
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deviant182
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My sister was diagnosed with this.
And ever since I had surgery on my jaw ive had frequent problems.
What worked for my sister was she was told to avoid gum and chewy foods etc for a while and do exercises on her jaw. This was like using them lollipop sticks (the wooden ones you can use in art) and place them in her mouth. Gradually adding more until it felt comfortable she could open her mouth wider. This helped with opening and closing and she also spoke to her dentist to get a mouth guard for sleeping in.
If you aren't happy get another opinion and also talk to dentists. Even student dentists can help
Hope it all goes well

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Anonymous #1
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(Original post by deviant182)
My sister was diagnosed with this.
And ever since I had surgery on my jaw ive had frequent problems.
What worked for my sister was she was told to avoid gum and chewy foods etc for a while and do exercises on her jaw. This was like using them lollipop sticks (the wooden ones you can use in art) and place them in her mouth. Gradually adding more until it felt comfortable she could open her mouth wider. This helped with opening and closing and she also spoke to her dentist to get a mouth guard for sleeping in.
If you aren't happy get another opinion and also talk to dentists. Even student dentists can help
Hope it all goes well

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Thanks for your reply!

Mine told me to do this but they've since said it's got too bad for much of this to make a difference. Pretty much every time I completely open my jaw it dislocates. I haven't chewed gum in 4 years I had the sticks too but they made me gag and gave me ulcers, just like a mouth guard does, which means I can't really use either of them comfortably Every dentist I've seen has suggested a different thing, a hard bite splint, a soft bite splint, trying to open it and stretch the muscles, not putting strain on the muscles. The list goes on and on, has either of your doctors suggested anything else?
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deviant182
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Mine tends to get worse in the cold weather to the point it locks up and I have to put 2 fingers on my mouth and pull my jaw apart :/
So we've basically had the same advice on that you need to try different techniques until you find something that works.
But if you're having ulcers etc have they ruled out you're not allergic to the materials they use?
Its a matter of trial and error with tmj im afraid. I grind so much that I end up waking with a sore jaw or it dislocated. Spoke to my dentist, he said everyone grinds particularly under pressure etc but asides from a guard at night he couldn't suggest more than finding ways to relax mentally.
Just hope you get it sorted! It isnt nice

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:) Lizzie19
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I have TMJ too! It's annoying, I've had it for about 7 years but only got it diagnosed last year.

The specialists have told me to try heat packs and stuff like that (I did get given a bite guard but it made the situation worse), and that in January they shall operate on my jaw (with some form of injections) if things don't get better. Looking at this thread I'm not sure if I want it now ...

While I'm on the subject did any of you guys have the joint x-rayed? I haven't and am wondering whether they are supposed to do that before they go operating on me? I think it's a bit strange...

And I've never heard of that treatment technique, I must try it! The doctor told me to fold my tongue back and open my mouth wide repeatedly for my exercise, but seeing as he also said I should avoid things like that that's also weird...

Hope you guys get your TMJ sorted sooooon!
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deviant182
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Ive had xrays my sister has, she's also had physio. The lollipops and physio helped her though. I was told when I was younger they'd have to break my jaw and reset it to which I flat out refused. Mine wasnt bad enough to warrant that at the time. Now it just gets worse when it's cold or I stress :/
But everyone had varying degrees of tmj and its something which can or cant be solved completely depending on what its like for you.

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lifeisred
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Ugh it's such a horrible problem but I'm glad I've found some other people who suffer like I do!
(Original post by :) Lizzie19)
x
I think you're talking about an arthrocentesis? I had this to put the disc in my jaw back in the right place, but it made it worse for me, and now I have limited opening and opening my mouth looks horrible, i'm very self conscious about it. For some people it works for some people it makes it worse, but personally I'm glad I took the risk.

I've had about 5 normal X-rays and one MRI too, which showed the joint has developed arthritis because of the way in which my jaw opens.

I wish I could pin point my symptoms like you have! Mine just hurts all of the time, and I've been told I grind my teeth in my sleep, but my boyfriend has never noticed a noise and neither have I (and I'm a very light sleeper). No they really haven't bothered checking the materials, they told me to either put up with it or not get better, which to me isn't very helpful... I hate having to physically manoeuvre my jaw though! It looks so disgusting. To the point where I've stopped eating in front of people just in case I have to relocate my jaw and I don't want to disgust people

My physio said that she could help me, but I really need surgery to stop my jaw from opening the way it does. I kind of wish they'd do the breaking of the jaw thing for me! I actually hate it so much.

I hope everyone gets some treatment that makes them better, and if you ever get frustrated with it, just message me, because I fully understand! (btw I just took off anonymous )
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:) Lizzie19
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Yeah, that's what they're gonna be doing to me...but I haven't even had one X-ray on it :/ So they haven't even looked whether it might be due to arthritis (seeing as a lot of my joints are sore and have the same kind of pain).

O dear I have heard it sometimes makes it worse, I think I'd give it a go (might as well) but only if they x-ray it first otherwise. but the way things are going I think I'm gonna have to ask for one.

Last time I went to the hospital the Doctor felt around my joint, and now it's feeling very odd...like it's protruding from my face (not the same as my other jaw joint, which I don't have TMJ in). I don't know what she's done to it because it wasn't like that before...and I'm getting more of the TMJ headaches/ear aches on that side than before. :/ THIS SUCKS!
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Anonymous #2
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I have tmj too, my two middle teeth in my bottom set are about a centimetre away from the two middle teeth in the top set and my jaw is at a kind of angle so it sticks out at one side :/:/:/:/
The gp sent me to a specialist who said I just couldn't open my mouth that wide and that was that
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bst12346
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I've had tmj for 2 years and have had 1 mri done and numerous x-rays. I have arthritis in both tmj joints. :/ I have also had an Arthrocentesis on my right side but it didn't help. I can bearly open my mouth and gave constant pain including ringing ears, headaches 24/7,cramp in neck, tingling fingers and reflux all from tmj. They tried bite splints to no avail. They have no clue on what to do now.
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Anonymous #1
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(Original post by bst12346)
I've had tmj for 2 years and have had 1 mri done and numerous x-rays. I have arthritis in both tmj joints. :/ I have also had an Arthrocentesis on my right side but it didn't help. I can bearly open my mouth and gave constant pain including ringing ears, headaches 24/7,cramp in neck, tingling fingers and reflux all from tmj. They tried bite splints to no avail. They have no clue on what to do now.
This is exactly my situation! They're considering doing an eminectomy but they aren't sure yet. And I've been on baclofen and maybe going on nortriptiline (not sure about the spelling!) I'm so glad someone else has this as bad as I do (no offence). I hate not being able to eat sweets and chewy things! Have they suggested pain management to you?
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Anonymous #1
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(Original post by :) Lizzie19)
Yeah, that's what they're gonna be doing to me...but I haven't even had one X-ray on it :/ So they haven't even looked whether it might be due to arthritis (seeing as a lot of my joints are sore and have the same kind of pain).

O dear I have heard it sometimes makes it worse, I think I'd give it a go (might as well) but only if they x-ray it first otherwise. but the way things are going I think I'm gonna have to ask for one.

Last time I went to the hospital the Doctor felt around my joint, and now it's feeling very odd...like it's protruding from my face (not the same as my other jaw joint, which I don't have TMJ in). I don't know what she's done to it because it wasn't like that before...and I'm getting more of the TMJ headaches/ear aches on that side than before. :/ THIS SUCKS!
Omg I'd definitely ask for an X-ray! Because if your joint isn't filled with fluid then there's no point doing it! But I think that can only be detected using an MRI. I have the protruding thing too, but I got that after my operation. My right side sticks out and my left side caves in, I look really silly if I try to open my mouth it's so annoying.


(Original post by Anonymous)
I have tmj too, my two middle teeth in my bottom set are about a centimetre away from the two middle teeth in the top set and my jaw is at a kind of angle so it sticks out at one side :/:/:/:/
The gp sent me to a specialist who said I just couldn't open my mouth that wide and that was that
That's horrible! The wonkiness is so frustrating, I hate it. Have you tried going to a dentist? I tried talking to my GP and they just said they had no clue what to do, but my dentist referred me on which was helpful. I find trying to stretch the jaw muscles quite helpful too, I've gained about 2mm this year (which doesn't sound like much but trust me it makes a huge difference).
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:) Lizzie19
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Yeh I think I might, because I don't want them to do an op if theres no need I think they said they're gonna put fluid into it to loosen it up?

See yours sounds like it's worse, mine isn't a noticeable lump and I (think ) look fine if I open my mouth (apart from the fact that I can only open it a bit before it cracks.


I hope you all get better soon
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Nerol
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(Original post by lifeisred)
Mine just hurts all of the time, and I've been told I grind my teeth in my sleep, but my boyfriend has never noticed a noise and neither have I (and I'm a very light sleeper)
I was told this too, but it's complete crap.

I've suffered with this for about 6 years. It started as a spontaneous burning pain near my right ear. It gradually got worse until the point where my jaw was constantly locked. I got a mouth guard and bite blocks from my dentist (which didn't help). Now, my jaw is constantly aching and I can only open my mouth wide enough to fit 2 fingers in, and only just (sorry boys haha).

I also suffer with chronic migraines, which kind of spread down the right side of my face, which is just depressing. The doctors in the UK have been absolutely useless.

I live in China now and I'm actually going to go and speak to a GP here today to see what they say. Hopefully they can give me something!
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lifeisred
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(Original post by :) Lizzie19)
Yeh I think I might, because I don't want them to do an op if theres no need I think they said they're gonna put fluid into it to loosen it up?

See yours sounds like it's worse, mine isn't a noticeable lump and I (think ) look fine if I open my mouth (apart from the fact that I can only open it a bit before it cracks.


I hope you all get better soon
From my experience the crack completely went when I got the operation, so I hope this works out for you too, if you end up getting it! But I thought it was to remove fluid?!? I guess it has multiple functions.


(Original post by Nerol)
I was told this too, but it's complete crap.

I've suffered with this for about 6 years. It started as a spontaneous burning pain near my right ear. It gradually got worse until the point where my jaw was constantly locked. I got a mouth guard and bite blocks from my dentist (which didn't help). Now, my jaw is constantly aching and I can only open my mouth wide enough to fit 2 fingers in, and only just (sorry boys haha).

I also suffer with chronic migraines, which kind of spread down the right side of my face, which is just depressing. The doctors in the UK have been absolutely useless.

I live in China now and I'm actually going to go and speak to a GP here today to see what they say. Hopefully they can give me something!
Wow the similarities between this and how I feel are unreal! I measure it by the amount of fingers I can fit in my mouth too! Haha. Let me know if your new doctor says anything different that I could maybe suggest to mine please

Get well soon!
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