Chronic Pain

To get back to the question of worst complaints..I now suffer from tinnitus in my right ear.
Is there anyone out there who has this symptom? It is a high pitched buzzing sound and it is nearly driving me crazy!!
What do youthink I should do? Should I go to my Family Doctor? or just bypass him and go to a TMJ specialist? I mean I guess that is why I have tinnitus, I have read that TMJ is one of the main causes of it.
I am utterly confused about this disorder!
HELP

Well, yes; tinnitus IS only one of the symptoms of tmj disorder (or, it CAN be). I don't believe that everyone with TMJD actually suffers from tinniuts, however, and the majority of people with tinniuts do NOT have TMJ problems.
So, you can go to your family doctor. Even wax build-up can cause tinnitus! Your dentist or OMS is generaly going to believe it is based, in origin, by the tmj disease but, again, this is not necessarily true.
I have had two ear-infections in my lifetime, both since having numerous jaw=joint surgeries. My oms and my dentist didn't think it, the pain from the ear infection, had anything to do with infection and I only got help after spiking a high fever! That help came from a g.p.!

Thanks for the quick reply Anne I do appreciate it.
I don't have any pain associated with the tinnitus as far as my ear is concerned but it gets louder when I raise my shoulders and turn my head to the right. This is the side I have all of my list of issues (as you have read)
I am curious about your TMJ surgeries, I have never heard from someone who has had the procedures.
What did you have done and what was your condition before the surgery(s) and how do you feel now after the procedures?
Thanks,
R-

Hon,
I've had SO many surgeries, it's impossible for me to tell in detail you ALL of them. Suffice it to say that, after a couple of dozen "minor" surgeries (some that other people really stress and whine over); like repairing and tying-down the discs, removing the discs, implanting hardware and then removing hardware other than total-joints (more than once), implanting silastic, removing silastic, doing a temporalis muscle flap (bilateral) a couple of times, opening up my joints MULTIPLE times to clean-out heteropic bone and stitches that should've melted away but, in my case, did not, removing two of my ribs and a part of my hip and trying to build new joints from this (the really bad doc neglected to provide a decent blood-supply so the ribs melted away), removing what was left of the ribs and hip bone and replacing them with TMJI stock joints (without doing any measurements), upper and lower orthognathic surgeries (cut my jaw bones into 13 pieces and held them together with plates and screws), added a stair-step chin implant, though I did not want it; removed the plates and screws and did an unauthorised nose-job while I was asleep for the other surgery... I mean, really, I've been though more than, generally, 15 people together!
I'm the chick that everyone has stories about. You know theone, "I heard about this lady in Texas who had 30 surgeries and she's still messed up"... well, really, this was and is me. And, after all of this and the last oms admitting that he did a lousy job and we would, in the near future, do a cranial bone-flap (again, on both sides), he dropped me as his patient about 12 years ago. I've been on my own since then; thankfully, I've had a great pain-doc, at least. Without him, I would certainly have ended it long ago. For sure, if I had not found the "new" guy, up in NY, I would be on my way out right now! In fact, whent the last punk-doc fired me, a few months ago, I thought I had had it!
Finally, I found this site and got a referral to a GREAT, thinking and listening doc, and, as of yesterday, I started my pre-surgical clearing. What we're planning on doing as of July 30 is to remove the metal joints I have in there now, leave me without jaw-joints for sometime in order to get decent 3-d ct scans and then new, patient-specific joints are made by D. Bob, of TMJI; we'll be going back into the o.r. to seat the new hardware..
Sorry I can't be more specific about the surgeries.. really, there have been SO many! I stopped counting at 24; my son kept count after that.

USF-Bul,

Sorry about your ear problems. I have only been suffering with a tmj disorder for 1-1/2 years. (left side anteriorly discplaced disc, non reducing) But about 7 months ago, I started getting a very irritating buzzing in my right ear. Especially when I lay down at night. It was not exactly painful, but so irritating I had many sleepless nights. Drops didn't help. One day my phsio therapist said "why aren't you wearing a splint?" So I got out one of my old splints, and immediately my ear stopped buzzing. Since then, I haven't had much trouble - I just wear the splint for an hour or so every other day, and that seems to calm it. So I'm thinking, in my case, anyways, the position of my jaw or teeth was causing something to press on the inner ear??? So, for all it's worth, that's how my ear problem got a bit better. (Still bothers me from time to time.)

Ann, I read with horror your story on the tmj org website (complete with your excellent art). It's hard to read your story, it has been such an impossibly long journey that you have been through. I hope and pray that you finally get some long, long overdue relief. I have heard some wonderful success stories about jaw replacement recently. (Visit tmj surgery family) May I ask you a question, Ann? From your experience, have you ever seen arthroplasties work? Seems you think that people whine & stress about them - do you really think they are minor and worth a try? Sometimes, when I read stories, I read quite often people have arthocentesis, arthroscopy, arthroplasty, and then end up with total joint replacements anyways. With all your experience, is it worth going through all the minor ones, thinking that there is a proven success rate with any of them?

Thanks for any thoughts, and take care, both of you,
Ess

Ess;
Well, do I think that arthroplasties are worth it? That's a big question. I'd say, in my case, these multiple "plasties" I went through SOMETIMES helped but only for a very short period of time. My major problem was osteoarthritis and, unless the joints are replaced, and replaced correctly, no surgery is great. The MAJOR reason we did so many surgeries, rather than just go ahead with total-joints was that I have SO many allergies to plastics and the docs thought I'd probably have problems with any surgical steel and titanium, too. This is also why we did the replacements utilising my ribs; there would be no way I could reject them. But, as they were put in badly, there was no chance there, either.
I do have Dr. Bob Christensen's "stock" joints in now..; the problem there was that the doctor who seated them neglected to take ANY scans or measurements (he actually worked from xrays only) prior to the surgery. I feel, had he ordered the correct joints, I would not have been in this amount of pain. But, that's neither here nor there. I mean, what's done is done. When the idiot "seated" the fep's, he was not able to get an adequate number of screws to "hold" into the bone. Dr. Bob would not believe me that, for 12 years (at that point), I had these joints in with only ONE screw on one side and just two on the other. The warnigns that come with the joints insist on a MINIMUM of 3-4 screws per side. -guess the incompetent surgeon (who also lied to me about his skill with these particular joints; I learned, only this past year, that my jaw was the only one into which he had attempted to use these joints).
So, in trying to answer your quwstion: yes, I do thisnk there are some cases where people do well after certain surgeries, short of joint-replacement. There are many variables, not the least being the expectatins of the patient (this is what I mean when I talk about whining..; no tmj surgery is going to make you pain-free!), and the skill (or lack thereof) of the doctor. In my case, the few real chances I had to "fix" this; so that I would have FUNCTION, not really to relieve the pain, only worsened due to inadequate surgeons.
It's too bad they can't all accept their limitations!

Thanks for your take on this, Anne. Once you've gotten your next surgery, and things hopefully settle down so that you have a much better quality of life, you should write a book.

All the best,
Ess

Sorry, Stacey, for getting off topic - let me make it up to you by telling you my biggest complaints:

1) dentists walking away from you, and not helping you through the forest of confusion

2) length of time to be seen & treated, especially since, with a closed lock, there is a small window of opportunity to become "unlocked" - it really should be considered an emergency, with the sudden onset type, because the stakes are so high & the outlook grim if you condition deteriorates

3) the fact the many medical or dental plans do not cover tmj treatments

4) no standards or protocols for the main different categories of tmj, no certified specialists

5) no education on the jaw joint. Shouldn't there be brochures in every dentist's office? Shouldn't school children be educated on the safe use of jaws (like back-safe programs)

6) Where are all the case studies? Why don't all these well recognized specialists publish their successful case studies. Maybe they don't have time or money. The government should fund them.

I guess that's about it for me. Now we're back on track, Stacey. Hope you are doing well!

Ess

Hey, Ess (and, Stacy)..
To continue this "off-topic" or, part of your complaint, your last complaint to be more specific; "where are the case studies"...? Well, in MY case, they HID the facts. This is why I had no surgeon for all of these years and, the reason I finally did the drawings of my joints (last year) and skull was to coerce Dr. Bob, and others, into helping me! A little manipulative but necessary! Also, at this time, my son was loking to find boith of my past (bad) surgeons in order to stab them in the head! And, he had found one address (in town).. this made it more necessary.
According to others I've seen, also in terrible condition following multiple surgeries, they have also been left out of the studies and left behind by surgeons..., wherever these studies exist (and, if they do).
There DOES need to be a REAL, FDA-funded study of differing therapies and treatments for varying degrees of tmj-diseases.
I used to work for both OralSurgeons and Dentists; While our offices DID provide info/ pamphlets/education about TMJD, and I read the AAOMS newsletters MANY TIMES and for years, I do never recall seeing literature on ANY study. I wonder if the UT-Dental School in San Antonio, one of the best in the country, has done any.
In short, I agree with number 6, for sure!
As far as my writing a book; perhaps my kids would do a better job as they seem to have more vivid memories of what we all went through with this stuff!

I am seriously confused on what doctor to see about my tinnitus. I know I have the disorder, its obvious with the MRI results and all my symptoms but who should I go see first my family doc? or a dentist?
Any advise would help. I live in southwest florida and my pain doc referred me to a tmj specialist who is rather far away that he doesn't even know personally, so in the meantime what should i do?
Help! BTW sorry for all the questions guys, I am just soooo confused and in sooo much pain at the moment.
R-

Bull;
When I suggested that you see your G.P., FIRST, this was to rule out any other causes for the tinnitus than TMJ disease or dysfunction. I did not imply that you had an ear infection. Now, I'm wondering; have you actually been diagnosed with TMJD or TMD (same thing, different wording)? I feel that, IF you only go to the dentist, oral surgeon, or other TMJ "specialist", you will get the diagnosis of TMJD. I would, first of all, rule-out the possibility of something else going on.
The POINT I was making about my having had 2 ear-infections, too long not diagnosed was that I saw two tmj-specialists and they thought it was all connected to the tmj issue... and, of course, it was NOT!!!
So, it;'s up to you as to whether or not you want for this to keep going on. If it were me, I would go to the g.p. and then, if necessary, to the "specialist". In fact, this is the reason most insurace companies require referrals; they don't want people to go around, from specialist to specialist, when causes can end up being extremely simple!
Good luck.
Anne

Hi Anne,

A quick update on the tinnitus issue and to clarify a few things. I went to my G.P yesterday and explained my symptoms (high-pitched constant ringing and balance problems), he looked in my ear saw nothing and referred me to a ENT specialist. I asked him if there was a possibilty if there was aconnection between the tmj and the tinnitus he said that in fact "there is NO WAY that TMJ can cause tinnitus and that TMJD is just a catch all phrase that people use to explain a variety of symptoms that are unexplainable" he was very adimate(sp) that there is absolutely no connection between the tmj, and neck and shoulder pain. He said there are no nerves in the jaw near the ear that could cause tinnitus, he even went as far as offering to bring out a picture to show me the anatomy of the jaw/ear area. He was to point of being verbally abusive and angry about me questioning him about it. Basically I threw away my money my office co-pay to be reemed out. I left even more depressed and confused...
As far as being diagnosed with TMJD, my pain doc was the one who put all the pieces together after he ordered the MRI showing the horrible condition my right side was in (20 years of damage) he explained to me that I most definately showed all the signs of the disorder, he treats some with the syndrome, but again he referred me to a tmj specialist that I will not be able to see for quite sometime.

However, I am lucky that I have a good insurance company that allows me to go to a specialist without a referrel so I have found one here in town that is supposed to be good. But unfortunately, as has been discussed on this board numerous times, there is not adequate insurance coverage for TMJ care.

But I just wanted to give you an update, maybe the ENT will be able to figure out what is going on.
Frankly, after hearing what my GP had to say about TMJ and the secondary symptoms that I KNOW are related to it, the medical field has yet to figure this one out.
Thanks again for listening,
USF_BULL

WOW!!! I cannot believe your g.p. was SUCH A JERK!!! Again, WOW!!!
Is he/she also STUPID? Regarding the nerves close to the ear and, of course, the jaw-joints, what about the incredible Three-branched trigeminal nerve(s)?? Has this doctor never ehard of "trigeminal neuralgia"? What a horrible person. I am sorry you had to put up with that b.s., really!
I think that one of my major complaints about tmj/tmd/tmjd is that most people, including doctors, do not "get" the tmj's. Obviously, this doctor of yours needs to be in that catagory; so far gone he is nothing but stupid! I honestly cannot believe the treatment (or lack of) that you got form this ?person? again, wow!
I didn't know, as I don't know your history, other than what I've read of your posts in response to my posts, whether or not you have had or do have tmj problems..; this is the only reason I asked about it. For this idiot to try and say there can be no corrolation is ridiculous! I HOPE that the ent gives you some hope and answers.
For the edification of this idiot g.p., I DO HAVE tinnitus; have had this only SINCE my jaw joints were replaced! I deal with it on a daily basis and it is exactly as you described! I have seen MANY different doctors, mainly e.n.t.'s and oral surgeons, but also g.p.'s; their diagnosis: TNMJ Dysfuntion and Disease causing Tinnitus.. yep; every one of them agreed! So, whoever this was is, as I stated earlier, a complete and total idiot; stupid person!!!

My biggest complaint is that here no doctors seem to "get it." I have had 2 arthroscopic surgeries, 3 spinal blocks, painful massage to "release" the inner muscles, accupuncture, injections,....you name it, I've had it--except surgery which is what I feel I need as my lower jaw is clearly receding. Now I'm seeing a pain management specialist who is prescribing hydrocodone and soma. When I let his office know I was going to be gone on a much-needed vacation out of state, I got to spend 5 minutes with his nurse who spoke with him and he denied giving me the 8 days of meds I'm on to tide me over. She said there was a note attached to my chart saying I'd tried to obtain hydrocodone from my OB NP recently and suddenly I'm being labeled as a drug seeker! The reality is I had run out of the valium I take at night with my splint and left a message for this NP asking if she could write a script for it but she'd reported it as a request for vicodin. The nurse said the doctor had spoken with my PCP and they had agreed I had a problem. I know my pain management specialist is the only one authorized to provide hydrocodone and soma and when this request was made, I had just filled both---so why would I need more???? She said having this "note" on my file didn't look good but would let the doctor know what had really occured. So, my biggest complaint about TMJ is that doctors don't take it seriously, don't know what to do about it and too often label patients as drug seekers. I'd like to see him deal with this pain for a day......Just seems to me he's given up and he is certainly not the right doctor for me. He won't try a spinal block like the one provided by the doctor he replaced which gave me 7 weeks total relief, saying "there is no medical reason why that should have worked." These people give you no options and, as someone who works with them, it's infuriating!!!!!!!!!!

Mary; I do agree that SO many, too many, docs do not take this seriously...; they simply or actualy do NOT get it/understnad it and have not studied this thing we call tmj! However, if they have scoped you twice and you've been through so much else to try find the cause, PLEASE do not push surgery, ok? Honestly, you do NOT want to end up where I am and have been for well over a dozen years! (read my profile and posts.. really, you do not want to be me!!!)
There IS one thing you can do to relax your tm muscles; PLACE your tongue at the roof of your mouth.. there is NO way you can clench yor teeth while doing so. Keep doing it until it becomes a habit or second-nature.. And, it does sound as if your problem is a muscular one! -hence, the soma and the valium. Also, if you have a contract with one doc to provide pain meds, etc.. anything to help with the pain, you need to stick to geting any meds from that ONE doc. I have also learned this through experience. You will also want to be absolutely straght-forward about what actually works for you and, if you are on too low a doeage, let him know this!