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Old 09-10-2009, 09:51 PM   #1
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Anyone suffer from these symptoms?

The cartilage is completely out of my right jaw joint, I've got "referred pain" in my upper jaw but none when I open or chew. The pain is constant, my ears ring off the wall, and I'm dizzy.

If anyone out there has dealt with this, I'd really appreciate hearing what you did to resolve the situation and how well it worked for you. Thanks!

I've suffered the pain and dizziness for 6 years w/o any diagnosis or relief. Have just been diagnosed w/ TMJ, it's the first time I've heard anything that might explain my symptoms. But it seems like all the options involve ever MORE pain - and boatloads of $$, which I don't have. I'm so depressed over the so-called options that I'd like to curl up in the fetal position for approximately the next rest of my life. Is there any hope whatsoever??

Last edited by dizzynotblonde; 09-10-2009 at 10:04 PM.

 
Old 09-11-2009, 10:51 AM   #2
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Re: Anyone suffer from these symptoms?

Quote:
Originally Posted by dizzynotblonde View Post
The cartilage is completely out of my right jaw joint, I've got "referred pain" in my upper jaw but none when I open or chew. The pain is constant, my ears ring off the wall, and I'm dizzy.

If anyone out there has dealt with this, I'd really appreciate hearing what you did to resolve the situation and how well it worked for you. Thanks!

I've suffered the pain and dizziness for 6 years w/o any diagnosis or relief. Have just been diagnosed w/ TMJ, it's the first time I've heard anything that might explain my symptoms. But it seems like all the options involve ever MORE pain - and boatloads of $$, which I don't have. I'm so depressed over the so-called options that I'd like to curl up in the fetal position for approximately the next rest of my life. Is there any hope whatsoever??
NOW I get it! Of course all the important information is at the bottom so I am unable to give you better advice.

The disc that slipped was from in between your condyles which is a very multi-functional hinge joint. Why it slips? It's different for everyone but at any rate it is painful and almost unbearable. I've had it for three years.

Look up 'condyle' on wikipedia and it will give you a result of what it looks like. When you open your mouth and the disc slides forward it can cause pressure, pain, and ear problems. Why ear problems? Because what is directly behind that bone is your ear. When it hits the ear it can cause problems people think are ear related when really it isn't. What can happen from this is it pushes on the Eustachian Tube which is a tube connecting the sinuses to the inner ear to stabilize air pressure. This is why you pay get dizzy afterwards, which to me, is the worth part of it all.

I have a phrase I go by which is "you spend more money trying to figure out what is wrong with you that what is actually really going on." I lost everything and everyone I had because I became miserable, would do anything for relief

PLEASE message me and I can try to point you to the right specialist. What happens when you have all these strange symptoms and no one can figure it out doctors like playing hot potato with your case which could be very easily solved with the right specialist. I AM NOT A DOCTOR but I can give you my own story and what has worked for me. TMJ is still very new and very misunderstood and a lot of doctors are using various orthodontia from 40 years ago which do nothing but separate your teeth and not treat the muscles so they can relax and not cause so much pain.

For me it's my left jaw that hurts and until you are able to seek a specialist (dentist and orthodonists DO NOT count) use a cold ice pack on the joint, avoid hard foods, **try** avoiding stressful situations. At this point I doubt anyone would give you medication which is sad because even I know you are hurting but the closest thing is aleve.

Ok, sorry about the novel but I really don't want to see more people go through this than have to. Message me and I'll help you find a legitimate doctor.

 
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Old 09-11-2009, 08:52 PM   #3
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Re: Anyone suffer from these symptoms?

Clearly I'm a newb here - and my brain doesn't seem to be working well tonight. I call it a "stupid day", the pain and pressure seem to suck my brain dry and I can't think. Anyway, I'm not seeing the button to message you, tell me how to do it and I will! Thanks Velvetrance.

 
Old 09-12-2009, 08:36 AM   #4
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Re: Anyone suffer from these symptoms?

Quote:
Originally Posted by dizzynotblonde View Post
Clearly I'm a newb here - and my brain doesn't seem to be working well tonight. I call it a "stupid day", the pain and pressure seem to suck my brain dry and I can't think. Anyway, I'm not seeing the button to message you, tell me how to do it and I will! Thanks Velvetrance.

Click on my username to the left, then hit "Send Private Message".

 
Old 10-01-2009, 08:22 PM   #5
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Re: Anyone suffer from these symptoms?

I've tried sending a couple of PMs, but must've done something wrong, apparently they didn't go thru.

I'd like to hear from the "experts" here - those that have actually experienced the kind of problems I'm having. I don't want to go to some doc because he says he can help w/o knowing more about the treatments and their success. I'm at a point in my life where I just cannot take another round of high hopes followed by the inevitable crash when nothing gets better. Forewarned is forearmed!

 
Old 10-02-2009, 06:35 AM   #6
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Re: Anyone suffer from these symptoms?

Quote:
Originally Posted by dizzynotblonde View Post
I've tried sending a couple of PMs, but must've done something wrong, apparently they didn't go thru.

I'd like to hear from the "experts" here - those that have actually experienced the kind of problems I'm having. I don't want to go to some doc because he says he can help w/o knowing more about the treatments and their success. I'm at a point in my life where I just cannot take another round of high hopes followed by the inevitable crash when nothing gets better. Forewarned is forearmed!
HI--You need to get to a competent tmj specialist. Make sure the doctor belongs to at least 2 of these associations--American Academy of Orofacial pain, American Academy of craniofacial pain, american association for Functional Jaw Orthodontists.If you haven't already, you need to get some x-rays, and testing done, preferrably with a neuromuscular dentist, also one that has a lot of experience with Functional Jaw appliances. I will bump up a good list for newcomers that you can take to your consults to weed out the bad dentist...it was to Silverwings---I'll move it to the top of the posts for you. Good luck---(I"m currently in splint therapy--I also don't have any disc left on the left side, I feel your pain------J.

 
Old 10-02-2009, 08:30 PM   #7
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Re: Anyone suffer from these symptoms?

Thanks, jmitchell. I read thru the list of great docs but there's no one listed in Oklahoma. The OS gave me the name of a "real TMJ doc" in a town about 50 miles from my home - but due to the extreme dizziness I cannot drive. (I know, this sounds like a sob story - get the violins out!) My friends all work for a living and cannot take me to the doc. I'm on disability - which means very limited funds, can't begin to afford a taxi for that distance. Ins doesn't include dental coverage. Unfortunately there is just no way I can travel to a "good" doc.

Plus, from what I've read on here the idea of the splint to re-align my jaw absolutely terrifies me. Don't think I could stand to go thru yet more pain and suffering, nor do I see anyone saying it helped them. (Maybe I haven't read enough.) Also I have a problem with things that restrict movement, guess it's a kind of claustrophobia. Freaked out completely when a dentist put a rubber block in my mouth to help keep it open.

The thing is, I DO NOT understand how a splint could possibly do anything about the cartilage, which appears to me to be the problem. Yes, bad alignment may have been what caused it to get out of place - but now that it IS, how could re-alignment help? Maybe this is just panic because I'm so obviously scared of the splint.

The OS gave me a shot of novocaine in the hinge - why can't I get a cortisone injection there? I know it's not a cure, but wouldn't it help w/ the pain? The OS also said putting the cartilage back in place wasn't really an option. So it sounds to me like at this point it's a case of dealing w/ the pain rather than "fixing" anything.

I want to understand what WORKS, after nearly 7 years of disability I cannot face another treatment that will only end up lining the doc's pocket and do nothing for the pain & dizziness. The diagnosis of TMJ is only the latest in a long line, none of which have panned out. Think it's understandable that I'm extremely leery of this one.

Guess my question boils down to - exactly how is the dislocated cartilage treated?

 
Old 10-02-2009, 09:10 PM   #8
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Re: Anyone suffer from these symptoms?

If you are on SSDI some tmj specialists are DMDs and may accept Medicare, if you have that, as certain tmj treatments are covered under medical and are not considered dental, but you may have to search a bit for the right dr. Some will do trigger point injections of lidacaine and cortisone although they don't work for everyone. You probably need to find a competent dr (surgeon) to clean out if not repair the fragmented cartilidge (its similar to what is done on other joints such as the knee) - the cartilidge helps keep the disc in place so it can be surgically corrected assuming it has not totally degenerated or been lost - and you may want to look into doing fat injections or even prolo therapy as they can help with this type of issue as well although they may be more of a band aid fix as they need to be repeated to maintain any improvement they provide.

There is no guarantee about what works even with those with the same type of tmj problem - every person is diff so some treatments may work for some and not for others - a lot depends on the severity or advancement of the condition and the dr performing the treatment or procedure. What you need to do is find out what options or treatments are available to you or "may" work with this type of problem, try and determine the pros and cons of each and make a "educated guess" or decision on what to try first and find out if your insurance will cover it under medical.

Last edited by Thelma-Louise; 10-02-2009 at 09:10 PM.

 
Old 10-03-2009, 07:03 AM   #9
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Re: Anyone suffer from these symptoms?

Quote:
Originally Posted by dizzynotblonde View Post
Thanks, jmitchell. I read thru the list of great docs but there's no one listed in Oklahoma. The OS gave me the name of a "real TMJ doc" in a town about 50 miles from my home - but due to the extreme dizziness I cannot drive. (I know, this sounds like a sob story - get the violins out!) My friends all work for a living and cannot take me to the doc. I'm on disability - which means very limited funds, can't begin to afford a taxi for that distance. Ins doesn't include dental coverage. Unfortunately there is just no way I can travel to a "good" doc.

Plus, from what I've read on here the idea of the splint to re-align my jaw absolutely terrifies me. Don't think I could stand to go thru yet more pain and suffering, nor do I see anyone saying it helped them. (Maybe I haven't read enough.) Also I have a problem with things that restrict movement, guess it's a kind of claustrophobia. Freaked out completely when a dentist put a rubber block in my mouth to help keep it open.

The thing is, I DO NOT understand how a splint could possibly do anything about the cartilage, which appears to me to be the problem. Yes, bad alignment may have been what caused it to get out of place - but now that it IS, how could re-alignment help? Maybe this is just panic because I'm so obviously scared of the splint.

The OS gave me a shot of novocaine in the hinge - why can't I get a cortisone injection there? I know it's not a cure, but wouldn't it help w/ the pain? The OS also said putting the cartilage back in place wasn't really an option. So it sounds to me like at this point it's a case of dealing w/ the pain rather than "fixing" anything.

I want to understand what WORKS, after nearly 7 years of disability I cannot face another treatment that will only end up lining the doc's pocket and do nothing for the pain & dizziness. The diagnosis of TMJ is only the latest in a long line, none of which have panned out. Think it's understandable that I'm extremely leery of this one.

Guess my question boils down to - exactly how is the dislocated cartilage treated?
HI again---The problem with tmj surgery that is performed before the bite or jaw is stabilized is that for instance they go in and put a fat graft in for a new disc, if your jaw is in the incorrect place, or you have a completely unstable bite, this is just going to damage the new disc like the old one. In my opinion, you have to try splint therapy, and correcting the bite before anything major is done like that. Surgery is always a last resort. I'm sorry you have so much dizziness. That's horrible.
I'm in splint therapy right now with a splint slightly holding my mandible forward. It's not as bad as you think. I'm very claustrophobic (sp) as well, and have issues with gagging from splints, etc. but I got used to the thing in a matter of weeks, if less. I've had tmjd for 20yrs., so I know the pain, frustration and fatigue you are going through. Your question about cartilage being recaptured-----read Marlene's old posts from 2003. She had successful tmj treatment from a Dr. Brock Rondeau in Canada, and he had her in a repositioning splint, (lower full arch) that recaptured her discs, then she had her bite taken care of after the fact. (expanders, braces..) IT can be done with splint therapy and PT, massage therapy, and Cranial work. Hopefully soon you can work out something to get to a specialist to be evaluated. Surgery is always the last resort. I wish you the best of luck and health, and pray that you get some answers soon! ---J.

 
Old 10-03-2009, 09:16 AM   #10
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Re: Anyone suffer from these symptoms?

I to have been in splint therapy for about 4 weeks. Haven't seen much (if any improvement). My cartilage is out of place and folded in half. My doc seems to think i will need surgery and told me the only surgeon qualified is in Dallas. I have been in major pain for about 6 months. Tried a chiropractor. Took away the pain, but i have limited opening of my mouth and that didn't and hasn't improved a whole lot. i too, after reading this website and the horror stories am terrified of surgery. Rather than having multiple surgeries (like many people say they have) and jaw still not being repaired, I'd rather just stay in pain.

 
Old 10-04-2009, 09:32 PM   #11
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Re: Anyone suffer from these symptoms?

I'm really confused, now. I simply cannot seem to understand how the splint therapy is supposed to work. What keeps the jaw from going back to its original position? Mine's been fine for 55 years, and frankly I think it was the rubber block during the root canal that caused the problem in the first place. Had no pain before that! I'm talking serious phobic reaction, scared ****less at the very thought of the splint, don't think I could take it for 10 minutes before tearing it out whilst screaming. And people are saying it takes WEEKS just to get used to it? How long do you have to wear it? How do you stay sane, much less cope w/ everyday life? (At this point I'm not entirely sure I'm sane.)

I'm concerned that I'm hearing of one success several years ago. Are the odds that low? I'm SERIOUSLY concerned that there appear to be only a very few "good" docs. If this treatment works so well, why aren't there more? Why doesn't insurance pay for it if it's so successful? It bothers me that I keep being told "you just have to do it", am wondering if people are here because that's the course they chose to take - which of course is your option. Clearly I'm not convinced it's the right one for me.

My thanks to all who have answered. In the long run I cannot afford such treatment even if it does work, especially if it requires travel out-of-town, much less out-of-state or country. It is incredibly sad that money rules, but it does.

I wish you all the best of luck.

 
Old 10-05-2009, 10:22 PM   #12
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Re: Anyone suffer from these symptoms?

Hi Dizzynotblonde,

When you are looking for TMJ treatments, you're always going to come across many people who say, for example, try a splint it worked wonders for me. And others who say, stay away from splint therapy, I was injured by a splint. The problem is, there is no one "right" way to treat TMJ. You will always hear, what works for one may not work for another. It is a frustrating cycle. You will also find that there are many doctors out there who simply just don't know how to treat TMJ.

Managing TMJ is all trial and error. No one can tell you that a certain treatment is going to work for you. Most things you just have to try for yourself, and it is always recommended that you try all conservative treatments before you even consider surgery.

Also, don't get too frightend by the horror stories on the forum. The reason you don't see many success stories is that a lot of people stop logging on to the forum once they are pain free.

Another thing to consider, is that (I think you said) your cartilage has slipped out of place. Mine is out of place as well, and my jagged edged joints are slowly wearing it away, however it is currently not causing me any pain. All my current pain is stemming from the muscles surrounding my TM joint. It all used to be very painful for me; I tried splint therapy and it didn't work (and I'm very loathe to try it again, but that is because I've already had one unsuccessful attempt with it), I had a bilateral arthrocentesis a couple of years ago (which is only a band-aid fix) where they clean out the scar tissue in the joint and manipulate your jaw slightly, and I've not had a problem with the joint itself since. But I'm having great difficulties with the muscles.

Is the joint the sole cause of your pain? If your muscles are playing up as well, and they probably will if the doctors plan on repositioning your jaw, then its a good idea to take care of them as well.

I wish you luck and hope you find a good doctor/specialist who can help you.

 
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