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Old 06-23-2012, 04:43 PM   #1
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JodieJT HB User
Will neuromuscular dentistry be my next step?

Hello,
I suffer with severe TMJ disorder which results in terrible migranes, face/jaw & neck pain. Severe cracking on the left side when opening my jaw or chewing which is not painful but is loud and very irritating. I also have really bad grinding and clenching at night while I sleep.
I have visited my local maxilliofacial specialist at the hospital. I live in Scotland, UK. The specialist I have seen many times in the last 3 years. They took x-rays and I also had an MRI scan but nothing noticeable showed up. The specialist has said there is nothing he can do. I mentioned the Botox route but he put me off this as he told me he treated a patient in the past with this and paralysed her face temporary. I have had mouth guards and still use these at night to prevent me damaging my teeth and by the state of the three guards I have it's lucky I use them. I grind so bad I have made holes in two of them and there is dents and imprints of my teeth in the plastic so this shows how bad my grinding actually is. My teeth have been worn down by the grinding, but this was from before I was diagnosed..

I am now so fed up. The migranes & tension headaches are getting worse even tho I am now on amitriptyline now. My neck aches also. I still heavily grind and clench my teeth at night and all the mouthguards do is protect my teeth. It actually feels better when I give my jaw a break occasionally and don't wear them. My jaw still cracks so bad when I open my mouth, yawn or eat.. I feel like my condition is getting worse and I do not know where to go from here.
I have read about neuromuscular dentists and how they can help with jaw re-alignment, tracking and they look into the muscles in and around the jaw. This would probably help my sore and stiff neck muscles greatly. Would these specialists be the next step for me? Has anyone been treated by such and if so what was the outcome?

Maxilliofacial have stated there is no treatment for my condition but without looking at my jaw alignment. They just provided the first mouthguard but that does not help my condition it just prevents me damaging my teeth further. Also the hospital have stated I am to get these mouthguards made by my normal dentist from now on. NHS cut backs..

If anyone feels that neuromuscular dentistry could help me please let me know.
Also is this treatment available on the NHS here in the UK? As it would be for the treatment of an medical condition and not for cosmetic reasons. If it is not available on the NHS would there be any way of getting the treatment with funding via the NHS..
Surely this treatment cannot be just private if there is valid medical reasons for it. That would mean only the rich have the right to medical care and I am sure that's what the NHS in the UK strive to prevent.

I am absolutely at a loose end with this, any advice would be greatly appreciated.

Thank you,
Jodie

 
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Old 06-24-2012, 06:00 AM   #2
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Amanda6 HB UserAmanda6 HB User
Re: Will neuromuscular dentistry be my next step?

Hi Jodie,
I am also in the UK. NM dentistry with jaw tracking isn't a treatment which is available on the NHS, which I think is due to the fact that mainstream medical and dental profession say there is no evidence that changing the jaw position and bite can fix TMD.
I have been having private dental treatment for my TMD, because there was nothing which was of any sensible help that the NHS could provide to help me.

The dental treatment which I have been having isn't with a NM dentist who uses jaw tracking, but with a dentist who does functional orthodontics, and uses different types of splints to NM orthotics. It's a long treatment with orthodontics, and although I'm not yet completely free of pain, I do feel that it has helped with my jaw function as my clicking has improved, and I have had some improvement of pain.

 
Old 06-24-2012, 09:18 AM   #3
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Susie564 HB User
Re: Will neuromuscular dentistry be my next step?

Hi,

I'm in Ireland and NM Dentistry isn't the done thing here either. I'm going in for surgery on Tuesday with my Maxilliofacial consultant - pretty terrified but it's the only option I've been given and I have to try something. The surgeon I'm attending with is highly experienced and has treated many cases like mine (or so he tells me). Well I've obviously checked out his credentials and they stack up.

Does the doctor you saw deal with a lot of TMJ stuff? Is there a possibility to get a second opinion or are you tied to a specific hospital over there? I'm lucky in a sense that my local hospital has the National Maxillofacial Unit and the doctor treating me heads the department. Or what about your own dentist? It seems that some dentists even know very little about how to treat this condition. Have you checked the thread at the top to see if there's any recommendations for anyone around your area.

I was initially wearing my splint overnight too and my consultant told me it was making it worse and to only wear it for two hours in the evening - now, I don't grind my teeth like you do - I'm a clencher tho. Part of what makes this whole thing so confusing I think, is that TMJD is a sort of umbrella term for lots of different problems with lots of different causes. And there don't seem to be enough medical professionals who know what the hell they're talking about!

Sorry, feel like a bit of a rant this evening - must be the nerves starting to kick in I hope you can figure out what to do.

Last edited by Susie564; 06-24-2012 at 12:07 PM.

 
Old 06-24-2012, 10:20 AM   #4
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JodieJT HB User
Re: Will neuromuscular dentistry be my next step?

It is bad that this condition doesn't really have a treatment unless you want to go private. It seems like a lot of people suffer with this and you would think there would be more specialists that deal with it.
Amanda thank you very much for the information. I have an appointment with my regular dentist in July do I will ask him if he knows of any orthodontics or specialists that could possibly help with my jaw. I'm glad that you are seeing results and I will ask about the splints. Hopefully you will continue to see the benefits.
I just really want the tension headaches and migranes to go away. I can live with the clicking and crunching even tho I know in the long term this will probably result in some form of arthritis. I will be going back to the doctors this week to get some migrane tablets and see if upping the amitriptyline will have a short term effect. It seems like I am getting used to the doseage and then the headaches re-appear. So these pills does not seem to be an effective relief of the pain. Such a shame as when I first started the script I thought it was the wonder drug!
Susie don't worry about the rant, I feel like doing it all the time! It's so frustrating when you have this condition, know what's causing it and can feel the pain yet there is no "fix". I do hope your visit to the Maxilliofacial specialist goes well. Try not to worry. You will most likely get an X-ray and if you push for an MRI they can do it. Then the doctor can get a proper view of what is going on with the other structures apart from the bone. I do hope there is something your specialist can offer that will help you.

I have lost a bit of trust with my specialist as when I first visited I was told there was a deformity in my jaw that was causing the bad click when my jaw opened. This was after an x-ray. I was also initially told that I was going to be given a splint that pushed my lower jaw back.. But was given a simple mouthguard to protect my teeth which I chew holes in overnight.
Three years later and after another x-ray and an MRI scan I am now told its all down to a muscular problem and that there is no treatment. Yet there is a surgical route? Which obviously I do not wish to take. I also have hypermobilty which means I have more movement in my joints which doesn't help at all and means any surgery takes longer to heal and can have complications.
As for seeing another specialist there would be that option by getting referred to a different hospital here in Scotland.
I have had a good look online and it seems there is no neuromuscular dentists in Scotland. They seems to be concentrated in England tho and I have also read that typical consultations cost £175 and treatment can be upto £3000 so unless I want to spend a small fortune on medical care I think I will have to pass on these specialists unless I get absolutely no where with orthodontics, dentists or MaxFac specialists.
Looking online I have come across two dentists in Scotland. In Edinburgh and Glasgow that 'seem' to be referred to as dentists with additional training. **** knows if they are private or NHS but I will be ringing them on Monday.

As I have said its mainly the headaches & migranes I want to get rid off. Also the "pain in the neck" I could do without! I have had this ongoing pain since I was 15 so can only imagine I have been a grinder since that age..

It does make me wonder if having 12 teeth removed when I was younger is the cause of my TMD. These teeth were a mixture of adult molars, baby teeth and teeth from the front. Wouldn't it be great if I could find out, sue the dentist that extracted my teeth and then pay for a private neuromuscular dentist.. If only life was that easy!

Thanks for your replies and I do hope your treatment helps

 
Old 06-24-2012, 12:00 PM   #5
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Susie564 HB User
Re: Will neuromuscular dentistry be my next step?

Quote:
Originally Posted by JodieJT View Post
It is bad that this condition doesn't really have a treatment unless you want to go private. It seems like a lot of people suffer with this and you would think there would be more specialists that deal with it.
MaxFax requires both a dental degree & a medical degree - that's a lot of training, so I guess that's why there's so few

Quote:
Originally Posted by JodieJT View Post
I just really want the tension headaches and migranes to go away.
I had chronic headaches & sinus pain and congestion now for about seven years. I had no idea it was connected to my jaw.

Quote:
Originally Posted by JodieJT View Post
I will be going back to the doctors this week to get some migrane tablets and see if upping the amitriptyline will have a short term effect. It seems like I am getting used to the doseage and then the headaches re-appear.
I was on amitriptyline for a bit but it didn't suit me and a pain consultant switched me to prothiaden which is a similar type of drug. At first I thought it was some sort of wonder drug too - I hadn't slept properly in six months and all of a sudden I was sleeping like a baby. I started on 75mg per day just over a year ago, I'm now on 150mg. I guess your body gets used to the dosage after a while.


Quote:
Originally Posted by JodieJT View Post
Yet there is a surgical route? Which obviously I do not wish to take.
I agree you should explore all options before opting for surgery or indeed any orthodontic work that is changing things that cannot be reversed, but unfortunately I feel that's where I'm at so I'm putting all my eggs in this guy's basket and hoping for the best.



Quote:
Originally Posted by JodieJT View Post
I also have hypermobilty which means I have more movement in my joints which doesn't help at all and means any surgery takes longer to heal and can have complications. As for seeing another specialist there would be that option by getting referred to a different hospital here in Scotland.
I definitely think you need to canvass a few opinions - it sounds like you have a lot going on there. Don't rush into anything and try all the non-invasive options first. I wish I'd been referred to the right specialist sooner. Too much longer and I would be on a liquid diet as it's just getting worse & worse every day. I'll update this forum on how I get on over the next few weeks.

Good luck with your search.

Last edited by Susie564; 06-24-2012 at 12:03 PM.

 
Old 06-29-2012, 03:03 AM   #6
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Susie564 HB User
Re: Will neuromuscular dentistry be my next step?

Just a quick update - I had my surgery on Tuesday. It all went well according to my surgeon. I was super nervous but the staff at the hospital were fantastic and took great care of me. The first 24 hours I was quite sore but not much pain since then although I'm still on quite a bit of pain relief, which I will start reducing from today. Stitches to come out on Monday, and follow-up appointment on Wednesday. My ears almost instantly felt better - they don't feel blocked at all which they have done constantly for the last two years. I'm hoping this is a good sign so far, so good........

Last edited by Susie564; 06-29-2012 at 03:04 AM.

 
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migraine headache, neuromuscular dentistry jaw, nhs, scotland, tmj



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