Chronic Pain

hi, i'm nik.

i'm 33 & have suffered from tmj for 12 years. diagnosed when my wisdom teeth were removed, been progressively degenerating since then.

i've spent over $30,000 in the last three years -- out of pocket -- trying to make the pain go away. nothing really works. don't get me started on the insurance/financial aspects of this disorder.

i've been misdiagnosed & treated & medicated for conditions i never had so many times it's not funny. i wish i could file a lawsuit against every quack who failed to listen to me.

i live in the uk, but am american. i have a specialist in the states & one in england. i was told last week that my bone is now actually necrotising. i don't know what to expect, but i presume the jaw will eventually open so far on one side that i can not close it at all. my bite is changing dramatically right now, more & more every day.

i've been through everything but surgery, and i so do not want to go there.

i'm currently taking 200mg celebrex & 5mg flexeril every day. no one can tell me the long-term effects of this, but i know exactly what will happen if i quit taking it.

i'm angry as hell at this disorder. i want people to listen--medical professionals, laypeople--everybody. those of us woth tmj are not making it up, dammit. this is real. the pain is the most excruciating imagingable.

it literally makes me want to die when my muscles go into seizure.

Wow, you really said it! Most of all, I wish that other people could understand how painful it is, and how difficult it is living day-to-day, never knowing if it'll be a good day or a bad day.

hey hello nik, i'm cindy. the same exact thing happened to me. a dentist dislocated my face getting out a wisdom tooth. i dont know what kind of tmj you have ,but my face swung over to the right two inches and my mouth hung open wide too. all from a wisdom tooth. what happened was the jaw bone got popped right out of the socket, so the bite swung way over. a chiropracter smashed it in after it was like that for two years. now my bite is straight.hurt like you know what.i ran into alot of quacks too, and the one that saved me was a chiro. i hope this helps, maybe your face is dislocated? cindy

Hi Nik!
I'm glad you made it here, though sad that you have pain. You say the bone is necrotising, meaning it is dying. What does your specialist in the States say about this? In general, I've found that dentists and specialists in England are more conservative, and treatments, surgeries, and just interventions in general are done less often. This is good (and bad).. some unnecessary surgeries are cut down, but sometimes no treatment isn't the best treatment, either.
I understand your frustration. It is difficult. Have you been to a pain specialist? Going to a doctor who treats pain has been the best thing I've done for myself.
Sincerely,
Stacy

Dear Nic and others who've written. I completely understand what you're saying! About 18 years ago, I was an aspiring singer and had the misfortune of being in two car accidents in one day. The first knocked me to the other side of the car injuring the right side of my face; in the second, a friend was driving on any icy bridge and lost control of the brakes causing a 9 car pile up and multiple hits to the car we were in. Shortly thereafter, I had to give up singing as my voice teacher noticed I couldn't open my mouth as wide anymore. And then the nightmare began: Accupuncture, accupressure, chiropractic visits, MDs, oral surgeons and arthroscopic surgery, massage therapists "releasing" the internal muscles inside the mouth and now a pain management specialist. Three months ago, I was referred to an oral surgeon "specializing" in TMJ and now have a soft splnt vs. hard and have been to the dentist three times to fix teeth in the back which were ground down and began to break. I have lost confidence in this doctor as it seems he wants me to begin from scratch and it'll be a year or more before he even considers surgery (which dramatically helped 3 patients I spoke to). As for drugs, I take everything from soma to valium to hydrocodone and something called zonisamide (prescribed by a neurologist after his botox treatments didn't work). I now feel like a drug seeker as they make you feel so lousy about even asking for these things but the pain is unbearable. Try making your living talking when you can barely open your mouth. I HAVE noticed that when I wear the soft splint, my lower jaw moves forward and relaxes; I can see the indent when I wake up in the morning. I feel like I definitely have not only TMJ but the joint on the right side is arthritic. What drives me nuts is that no one seems to know what to do and I am embarrassed asking for hydrocodone and soma. Two years ago, I had three spinal blocks--one of which worked so well I was painfree for six weeks. Didn't even need an ibuprofen. That doctor has moved to another state and her replacement says there is no reason why it should have worked while I say please try again.

So, what bothers me the most is that the doctors can't get a handle on this and, thus, I feel they think I am a drug seeker which I am not. I hate taking those things as they do make me feel out of it. I don't know what the answer is but it's good to be able to read that others have had similar experiences and thank you for letting me vent!

Mary Shawn

Mary,

Have you not had an MRI yet? Seems to me that you need to have that, to see if your disc/s is/are displaced.

Can you tell us more about the 3 people who were helped, and what type of surgery they had? Was it arthroplasty?

Sorry about your pain & frustrations,
Ess

Hey, Ess. I think Mary had said, in another post, she was scoped twice but they did not find any arthritis or anything else requiring surgery or anyting which would be helped by surgery. Of course, things do change... as we with TMJ all know.. But, I wish I could get those who have NOT had the open-joint procedures and are really pushing for them to absolutely RECONSIDER!! Surgery does NOT help everybody! In fact, those of us who have been through the multiple procedures are, in general, now without our own jaw joints. It's a completely MISERABLE position!! Obviously, we all have absolutely different things going on and surgery is NOT the only or safest (in many cases, should absolutly NOT be done) bet.
Mary: PLEASE, please, please; reconsider this as I can tell you some stories about my own life that would make you cry... And, believe me, they (all of the surgeons I have known) have been extremely willing to try and "fix" me. I wish I had listened to my own inner voice and I could have been much better off, to be sure!

Mary_

I understand your frustration. I have been dancing since I was 3, and studied “OPERA” for many years before I had to stop singing altogether. Like you, I have been involved in a few MVA’s. The first, I wound up trached on the scene after being broad sided and wound up with a condition known as Gullian Barre Syndrome, which essentially took classical out of the equation for me. The second is of no real consequence, though I did herniate discs in my back. The third, a tree fell through the windshield of my convertible while I was taking the kids ice-skating; which ended that part of my life permanently.

Please understand there are many conditions lumped into the umbrella of TMJ, of which bruxing or grinding would be included. This type of condition is generally considered muscular, and is generally treated with splints to position your joints to a neutral space within your individual bite. While there are many indicators that can trigger bruxing/ grinding (e.g. pain, stress, injury), eventually the behavior becomes a habit. It takes much longer to break a habit than to create one. Advanced “Bruxism” can exacerbate other conditions within the realm of TMJ, especially nerve related injury! Nerve pain is unbelievable! It can literally take your breath away. Can you describe the pain for me?

At any given time there are 10,000,000 people being treated for TMJD in the US alone. Of that 10,000,000 people, only 15% will move ahead with an arthrocentesis and only 5% of the 15% will require further surgical intervention! Surgery may seem like a quick fix when you are in pain, but you do need to understand there are consequences to opening the joint space. Orthopedic journals indicate the existence of what is referred to as the “Magic Number”. That number is 5… 5 tries, that’s it! What that means is that after opening the joint space five times, your chances for success exponentially decrease.

I am a member of that 5% that has moved on to advanced surgical procedures. The accident did a lot of damage. If I had known then, what is available now… I would NOT be in the position I am today… Jointless, waiting to have my immune system fried so my surgeon can attempt a procedure that has only successfully been done a few times worldwide. I’m not interested in being some groundbreaking assay on growing a TMJ through Distraction Osteogenesis. I am just hoping they can knock back a layer of pain… enough for me to function and be consistent.

Have you seen a neurologist?
Have you considered a Myofacial Pain Clinic?
Have you considered a Neuro-Muscular Dentist?

Mary, I know this hurts. I think we all understand that here, but it can always be worse!

Please keep us posted…………………………..

Hi Anne,

How are you doing? As an education for others, please tell us what you would have done differently, over the years. Would you have had ANY of the surgeries? Chose different surgeons? Chose different procedure? Splints? What were your alternatives?

Hi Lisa,

I'm hoping that you can get a better quality of life soon. If the procedure has been done successfully, even a few times, then why not you? Why can't you be a successful one? That's what I'm hoping & praying for.

I'm getting closer to my decision to have an open joint entirely soft tissue arthroplasty, with post op splints then braces, for the condition of anteriorly displaced disc without reduction. I understand if the arthroplasty is not done, degenerative osteoarthritis will occur in most cases. (I have recently started getting cracking & grating noises, & cannot chew at all now without pain) And the newsgroups are full of people who's condyles & emminences have worn & broken down over time. I read where closed lock and degenerative osteoarthrisis or DJD co-exist.

But you two both scare the bejeebers out of me with your warnings about surgery. I have talked to a few women (4) who were very happy with their bi-lateral arthroplasties, 1 yr out, 2 yrs out, 5 yrs out, and one was 10 years out.

I sure wish there were published, accurate stats on this specific procedure, for this specific condition. It would make it much easier for me!

Sorry if I hijacked the thread, but it's relevant, and I'd be interested in the voices of experience.

Thanks,
Ess

ESS_

First let me say that I am NOT anti-surgery. I just want people to understand that this is not always a quick fix. Just because you undergo anesthesia, does not guarantee your pain will be gone. There are layers and it can be quite difficult to identify them.

I have also read that disc displacement can lead to degenerative changes within the condyle/ eminence in chronic open/ closed lock situations from the imbalance. Personally the damage to my left TMJ is a direct result of what happened to the right in the accident.

You bring up a very important discussion… What comes first, structure or occlusion? There are opinions in both camps. Personally, I don’t see how they can alter the bite without having the joint space in its proper position. That said; having the muscle flap/ discectomy followed by positional splinting and braces makes a lot of sense to me, but I am not a doctor!

Unfortunately surgery is a necessary evil for some, and I am so sorry you are faced with this decision. Keep talking and reading, but in the end it has to feel right for you. There will always be opinions in both camps, and the risks don’t change… As with any procedure, you have to approach this with confidence. Attitude is ½ the battle!

Thank you for your kind words, and I do agree. My point in saying that was because I never imagined that what has happened could actually happen. PM me with your e-mail address. I have a few studies on point that may some help.

Thank you, Lisa, I've just emailed you.

Ess

First off, thank you all for your kind words and understanding. It is amazing so many suffer from this condition and doctors (internists, dentists, oral surgeons, pain management specialists, neurologists,....I've seen them all) act like TMJ is a trivial issue. The people I know who have had successful surgery all went to the same doctor, an oral surgeon, but he is taking his sweet time with this and by making me try again things I've already tried is costing me a small fortune! And the other doctors are now taking their lead from him, saying "If he really felt surgery was needed, he would have done it be now." So I'm getting the raised eyebrows and basically have been blown off by them. Equally infuriating is that the magical new splint has stopped working totally. Yes, it prevents me from grinding my teeth but I can still feel my jaw moving and grinding when I have it on. I've actually resumed using my hard splint and now recommend that if you run across any doctor who says the little splint on your two bottom front teeth is not giving you good advice. Nor is it covered at all by insurance. I am so sick and tired of this pain and the distinct lack of interest by the doctors. Even on vacation, away from stress, the pain was excruciating. I don't know what to do next but am considering seeing the chiropracter again and finding a massage therapist who knows about TMJ. Yes, the latter is painful but I did receive some relief. What I really hate is the fact I feel I've been labeled a "drug seeker." I can't stand taking meds of any kind. It's just so infuriating!!!!!
I have a chronic condition which affects all aspects of my life and just because the doctors don't know much about TMJ, I am stuck between a rock and a hard place. Thanks for allowing me to vent.......

Mary

I've come to the conclusion that dentists are not capable of treating TMJ problems. They don't have the training, the experience, and they lack the professionalism that a true medical doctor should possess. Dentists who call themselves experts are going to drag patients through the process of splints, soft food diets, muscle relaxers and other medications, physical therapy, and then when they've billed for all they can bill for, the suggest seeing another dentist that has some magical sub-specialty that can help. Then the process repeats itself until the next hand off.

I'm stuck at an impasse. Surgeons won't work on the joint unless my bite is corrected. Orthodontists won't work on my bite unless the joint is corrected. No dentist will do anything for me. The last orthodontist I saw won't even return my calls (and I'm nothing but polite in person, I don't express the opinions I have here with them). I'm fed up with all of them. All they're capable of doing is dragging me along from billable appointment to billable appointment.

It's frustrating. When I had the accident that put this all in motion, I came into the hospital on a stretcher near death, gushing blood and had facial bones that obviously weren't were they should be. A patient in that condition gets all the attention in the world and things actually happen. Years or decades later when things start to fall apart, we fall into the hands of dentists who haven't a clue with how to deal with long term patients. If they're not pulling or cleaning teeth, they're completely out of their element. They aren't capable of dealing with a patient whose problem can't be fixed in one sitting.

TMJ should be treated by actual medical doctors. I don't think we're going to see any advances until then.

Hi Alex,

I've been watching for updates from you - it sounds like you are not making any progress. I'm sorry to hear that.

My dream (we can all dream, right?) is a TMJ Treatment Centre in each major city. Specialists all under one roof, who are highly trained in TMJ and do the procedures all day long. Surgeons working with dentists and orthodontists, anesthetists, physio, chiro, accupuncture, doctors. If I was Bill Gates, this is where I would direct some $$millions$$.

Sounds like you need a co-ordinated team working on you, to give you the best possible chance. Do you have a family physician that can help you stick-handle this?

I know there is hope for the future - they are experimenting with growing new discs for replacement, growing bones, etc. But what about now? Yes, many people are being helped, but many people are falling through the cracks.

I think you are right - a recognized medical speciality in the tm joints - it's got to happen, and fast!

Ess

Hi Ess,

Yes, I haven't made any progress lately. The doctors I have seen aren't going to help, and I can't really cope with searching for new ones right now. I can't convince myself that it wouldn't be more of the same.

I have a primary care physician, but he doesn't strike me as the type that can help. He'd make a referral to the local oral surgeon, who I've already seen.

I really do think a medical specialty is needed. Even if they only had it in a few locations and communicated with doctors in other areas, that'd be something. It's way too disorganized right now.