Take a look at these selected stories from around the web. The moral of the story is to stick to conservative, reversible, therapies if at all possible. Read more on the “What can I do now?” page.
A worst case-Scenario from the TMJ Association MySpace area:
You can probably ask your Dentist for a referral.. do try and NOT go the surgical route if it can be prevented. Be careful about splints (mouthguards) as they can make real changes in your bite and, therefore, your tmj's. If you are given a splint, make sure it is comfortable for you while in different positions (lying down, sitting, standing, leaning forward, etc..). Do NOT allow for anyone to grind your teeth in order to change your bite. Be careful of orhtodontists and do your research before ANYONE implements any therapy. Even small changes can produce drastic and permanent problems. There really are not a lot of answers and this is the problem. I've been through ~30 surgeries in almost 20 years of this and have no jaw joints at this time... well, they (the all-metal stock joints) are there, they just don't fit and fall off, swimming around in my joint-spaces, especially at night. It's like being stabbed repeatedly while I'm trying to sleep. I cannot sleep on my back or side or front. I can only sleep while sitting (makes my butt hurt too). I've been waiting to have these joints replaced with patient-specific joints but am pretty sure that I'm now without a doctor/surgeon to help me. He doesn't call and has not returned any of my calls since the 2nd of February (while we were in prep for surgery). Doesn't sound very good, does it? I will ALWAYS live with debilitating pain.. as long as I do live... thusfar, it's been far too long.
Please heed my advise and be very careful. Don't listen to the first oral surgeon you meet! And, don't take what I say as the ultimate truth... please investigate everything and anything! I truly would never want for any other woman (or man, though it is mainly us women who deal with it) to go through what I have been through! Please take care and let me know how it goes for you, ok?
Even a dentist can be fooled, from the same site as above.
Dr. D's Story
I am a dentist who became a TMJ sufferer in 2000 through an odd circumstance. I came across your web site and your request for patient representatives while researching various aspects of TMJ.
I became interested in occlusion and occlusal muscle harmony after attending a seminar in 1999 presented by a nationally known clinician. I personally had no history of TMJ or Myofacial Pain Dysfunction but a number of my patients had and I was trying to find a way of helping them. This particular clinician had very convincing arguments why his critics including NIH, were completely wrong in there approach to TMJ and neuromuscular harmony. He seemed to have the answers which eluded everyone else. His claim was that through proper equilibration of the dentition, one could restore the neuromuscular harmony of the facial muscles and TMJ. If equilibration alone could not solve the problem in its entirety, then either crown and bridge, orthodontics or surgery could be used to supplement the equilibration process. He was so convincing that I became a disciple of his teachings, taking a number of his courses on occlusion and TMJ. I was so convinced that I had finally found the answers which eluded dentists in the past. It was constantly stressed that equilibration causes no harm and can only benefit the patient.
The procedure was even offered to course participants, for a fee, of course. It was stressed that if you are adjusting your own patients bite, you should have your own adjusted. I so believed in what I was told, that I signed up for the procedure, being assured that this could only be a benefit and could cause no harm. The procedure was done over lunchtime during one of the seminars. What happened to me was unthinkable. My bite was closed down 2 millimeters as a result of the equilibration. This forced my condyles into retrodiscal tissue when I maximally intercuspated, resulting in tremendous pain, spasms and TMJ dysfunction. Most of my natural tooth morphology had been obliterated. I was told that the problem had nothing to do with the equilibration that I was not closed down and the resulting pain and spasms were attributable to clenching and bruxing. I did not believe this theory. The pain started shortly after the procedure was completed. Models I had taken on myself showed the destruction of tooth morphology and the subsequent over closure. Iatrogenic over closure with compression of retrodiscal tissue was subsequently verified by numerous practitioners who I sought second opinions from. MRI studies also confirmed this.
I was left with only three options to decompress retrodiscal tissue and to restore my vertical back to where it was prior to the equilibration: 1) orthognathic surgery to reposition the jaws, 2) full mouth reconstruction with crowns or 3) orthodontics to super erupt the teeth, with no guarantee this would work. For me, it was the lesser of three evils. I began orthodontic treatment in February 2001 and I am currently still in treatment
I know first hand the pain, frustration, loneliness and depression which accompanies the course of such a problem. Further complicating the issue was the nagging realization that I allowed this to be done to me simply as an academic exercise and not as the result of any preexisting TMJ problem. It's too late for me. I learned the hard way. I now realize, through my research, that there is no scientific basis for harmonizing the bite or other forms of irreversible therapy except in very select, isolated cases. The sad part of this is that scores of dentists who attend these seminars are led to believe that this irreversible procedure can only help their patients and can cause no harm.
It is not for me to judge the merits or lack thereof, of occlusal equilibration or of any other irreversible procedure. Individuals are free to choose the type of treatment they wish to pursue but those who choose irreversible treatment, equilibration included, have the right to be told they could be left worse off or irreversibly damaged for life. I was never afforded that luxury.
I would be happy to discuss any ways I could help. There needs to be a uniform, defined standard for the diagnosis and treatment of TMJ disorders otherwise patients are subjected to the whims of every practitioner's pet theory on how it should be treated. Anecdotal testimonies of the success or failure of a particular theory have no scientific validity. Without well organized, independently verifiable studies on the validity of any particular treatment regime, we cannot even begin to have hope.
I would be interested in knowing, for my own peace of mind, if you have come across patients who have had there bites equilibrated and the results of the outcome. I have a strong feeling, I am not alone.
COSTS, from the TMJ Association website
Comment: My orthodontist has diagnosed me with having a TMJ problem and wants to put braces on my teeth in an effort to help correct the problem. It will cost approx. $5,000 so I wanted another opinion before I spent that much money.
Comment: I have been to a dentist who said that I was grinding my teeth and gave me a mouth guard and then said I needed to be fitted with a special splint to fix my jaw for $1,000.
Comment: I have been diagnosed with TMJ by a "specialist" who has warned me that my insurance will not cover the TMJ mouthpiece needed to correct my bite (which I never knew I had a problem with). The mouthpiece will cost $3,000 out of pocket.
Comment: I have had TMJ since 1984. When I first got it no one knew what it was. As of this date I have spent approximately $30,000 over the years having my splint adjusted.
Comment: I was just diagnosed with TMJ and my dentist recommended a customized acrylic nightguard to relieve the pressure of my nightly teeth grinding. I was shocked at the quoted price of $1400 for the nightguard and 5 follow-up visits to monitor my progress and make adjustments to the guard.
Question/Comment: An oral surgeon wants to perform arthroscopic surgery on our daughter's jaws. Her rheumatologist feels she should get the inflammation down and warns even if she gets the surgery ($7,200 cost) she still might have pain. What should we do? Who is right?
Comment: I have already spent $500 for splints which do not work. I am in almost constant pain. I don't have a life anymore compared to how it used to be.
Question/Comment: I would like to receive some guidance, if possible, on the practicality of these recommendations to see if the cost is in line with this type of treatment. 1. Initial consultation with oral surgeon (including a panoramic X-ray) $345. 2. Prescribed anti-inflammatory medication and muscle relaxers (to be paid by patient). 3. Fitting of an oral appliance with 2-3 follow-up visits $2,300 to be paid up-front prior to insurance submission. 4. Additionally an evaluation with a sleep disorders specialist with the possibly of an MRI. I would like to receive a second opinion from another oral surgeon, but this will cost me $200. I can look into the reputation of a particular doctor, but how do I evaluate the cost of TMJ treatments?
Comment: The dentist I've seen recommended physical therapy, saying all may pain, etc. was muscular. I've spent over $1000 and am improved, but not pain free. The dentist told me his splint costs $800, which I don't have.
Comment: Over a years time I have watched my mother severely suffer from this evil disease. She actually under went surgery in which they replaced the disc or at least tried to on the left side of her face in March of 2001. In my opinion this destroyed her life and only made things worse. She is in and out of the hospital at least twice within a month and even then she is in there for at least a week. I have had to stand by and watch people tell her that the pain she feels is all in her head and that it can't be that bad. She no longer is able to work due to this. I feel that I am watching her slowly give up. Now they told her she has to go through a complete joint replacement and that is going to cost at least $67,000+ and her insurance does not cover a dime if those three little letters are mentioned "tmj".
Question/Comment: I believe I was overcharged for my orthotic appliance. Are there any cost price guidelines available? Is there anything like a "usual or customary charge?" Does the American Dental Association or other similar groups include these appliances in there cost review/reports? What can I do If I was overcharged? I paid approximately $4,000 for an appliance, TMJ evaluation, and X-rays. I have no pain, only clicking noises. I don't expect this device to work.
Comment: A dentist convinced me I needed to have all my teeth capped for $75,000 and then after that he said my teeth were perfect and I should go see a shrink and I did. She and I both couldn't figure out why if this was the problem he didn't tell me to see a shrink the 3 years he was working on my teeth. Now I live my life with a bite guard on most of the time. I don't know who to trust or where to go.
Comment: I have gone to a TMJ specialist who gave me an appliance, after learning that my insurance will not cover this I am $3500 in the hole and making payments but have not gone back. I AM IN PAIN all the time.
Comment: My 21 year old daughter has suffered from TMJ since she was 12. We have tried many treatments, but she suffers terribly. We recently came upon an oral surgeon in our area who says he is the only one in the south doing a procedure in which he puts computer sensors on her pressure points. He now has now informed us she needs her teeth totally redone in porcelain at a cost of $25,000. We have wasted over $50,000 already in treatments that have not worked.