The TMJ Association - changing the face of TMJ

TMJ Resources - Our Family - Patient Talk

Felicia F.

I’ve had TMJ pain for over forty years and have only just discovered The TMJ Association. The TMJ Association and its web site have been the ONLY providers of information about TMJ that I would judge as comprehensive, interdisciplinary, unbiased, pro-active, science-based and hopeful. I am extremely grateful to the board and staff for presenting this compendium of what appears to be the most up-to-date information about diagnosis, treatment, and research.

Now at age 53, I still don’t know why I am in pain but I understand that I exhibit many of the co-morbidities of TMJ dysfunction that have been outlined by The TMJ Association. In addition to the usual TMJ symptoms—right-sided pain in my jaw, ear, head, neck and back and difficulty opening my mouth and chewing—I have been diagnosed with Marfans Syndrome (a congenital connective tissue weakness that affects the heart, blood vessels, lungs, eyes, bones, and ligaments). I have mitral valve prolapse (a heart valve defect), extremely loose ligaments, I bruise easily and heal slowly. For whatever its worth, I have a labral tear in my right shoulder joint. I suspect I have Ehlers-Danlos Syndrome (another congenital connective tissue defect, which I first read about at www.tmj.org). I recently had right hip resurfacing surgery due to osteoarthritis—probably caused by hip dysplasia, ballet training, a skiing accident, and loose ligaments. (Everything seems to be right-sided.) I also have hearing loss (maybe just my age?), a life-long sensitivity to noise (Hyperacusis?—as described on the TMJ Association’s web site), and occasional migraines—less now than before—and other headaches. Are my nocturnal leg cramps a related condition? Do the trigger points on the right side of my back, neck, at the base of my neck, and in my temple point to fibromyalgia or are they part of the TMJ scenario? Is the sometimes violent itching of a dime-sized spot on the bottom of my foot near my big toe—diagnosed as lichen simplex, a neurodermatitis condition—a part of some bigger systemic syndrome. It makes one a little paranoid.

I’ve tried just about everything to relieve the pain in my jaw—8 different splints, equilibration, physical therapy, alternative medical treatments, and orthodontics—except surgery. After reading the stories of those on the association web site and talking to others about their surgery experiences, I feel lucky to have not had surgery. I feel lucky not to have some of the other co-morbidities: Chronic Fatigue Syndrome, Irritable Bowel Syndrome, etc.

I have consistently been told by every dentist that I have ever seen since I was 19 years old that I have malocclusion i.e. my bite was “incorrect” –a mechanical problem—and if it was corrected, by orthodontics, equilibration of my teeth, or crowns and bridges, I wouldn’t have pain. I was told I was clinching and grinding—that these were bad habits and a result of psychological stress and unresolved anger—and that this was making the pain worse. I have recently learned that some medical professionals believe that most of us clinch and grind—that it is not necessarily abnormal—but only some who do it experience pain. My older sister’s jaw pops and clicks loudly and she obviously has difficulty eating. However, she is not in pain. I admit that I do have unresolved anger over the tremendous amount of money I’ve spent on treatments that have not relieved my pain—some that have possibly made me worse. And I admit that daily pain causes me a great deal of psychological stress.

But, if my pain is due to a malocclusion, and I’ve done all of these different things over the years to correct it, why am I still in pain? Were the treatments not done correctly? Or is there something else going on?

I currently treat myself with painkillers and other drugs, and feel lucky to say I am fairly stable at the moment.

THE DETAILS

The first symptoms I experienced were when I was around eight. I remember several times waking up without being able to open or close my mouth. When I was sixteen, I began experiencing one-sided headaches. I went to an ENT and was given decongestants and Vitamin B-12 shots. The headaches continued—sometimes I awoke with what I would now describe as a migraine-type headache. When I was nineteen, in 1971, I read somewhere that one-sided headaches could be caused by a “bad bite.” I saw a dentist in my hometown of Greenville, SC. Someone had mentioned he had some experience in treating jaw joint pain with equilibration techniques using a splint and then grinding down the “high teeth.” He used the term TMJ. He fitted me with a splint and then equilibrated my teeth over a nine-month period. The pain continued. I began taking aspirin or Bufferin everyday.

After finishing college I moved to Washington, DC and was referred to a TMJ specialist at the Georgetown University Dental School. He provided me with another splint and continued with equilibration. One afternoon, I was experiencing tortuous jaw and head pain and begged for an emergency appointment. I sat weeping in his dental chair as he adjusted my splint. Then he gave it back to me and said, “Try this.” I understood that he thought I could put on the “corrected” splint, and it would make the pain go away. I felt completely misunderstood. Between my sobs, I meekly said, “But what can we do to treat the pain NOW. I’m in agony.” He said that the only thing he could do was adjust the splint. I implored him to inject my jaw joint with Novocain or give me pain medication. Finally, he gave me a prescription for codeine.

I continued to experience severe one-sided headaches, and the specialist at Georgetown recommended that I have orthodontic treatment. I was moving to New York City to go to graduate school so he referred me to a student of his who was an orthodontist in Fort Lee, NJ—somewhat of a trek from Manhattan. I didn’t question that in the entire city of New York there was no other orthodontist who had experience in creating a “good” bite. I had four teeth removed prior to having braces and recalled at the time that I had had four baby teeth pulled when I was about eight and four impacted wisdom teeth extracted when I was nineteen. This made eight tooth extractions in my lifetime. Once the braces were on and my teeth loosened up, the pain in my jaw abated to some extent. I was also given a partial splint to wear on my front teeth at night. After two and one-half years, the braces came off. In the process of removing the braces—they were the plastic kind glued onto the front of the teeth—two of my front teeth were “killed” causing them to turn gray and requiring me to have root canals and bleachings the following year. Soon after the braces were removed, I began to feel an increase in the jaw pain. I also realized that the orthodontist had pulled up several teeth to where the roots were exposed and tilted them all toward the inside of my mouth presumably to correct my bite. It looked strange and my gums seemed to start eroding.

I went to another dentist in New York City who told me that TMJ pain was caused by deep psychological problems and that I should see a therapist. My family doctor back in South Carolina gave me a prescription of Valium and told me to take one 5 mg pill every four hours. This completely stupefied me.

I then saw an article about a dentist who was treating TMJ in a different way—another TMJ specialist—a former dentist who was head of public medicine at a major university. He gave me injections of non-steroid, anti-inflammatory drugs with some lidocaine into the jaw joint and muscles. Very painful and scarey. After the lidocaine wore off, the pain came back—sometimes more aggravated by the injections. He also gave me a prescription for very powerful arthritis drugs, which wrecked my stomach.

Week after week for over two years, I went back for injections. My level of denial was so high that I continued to believe that the injections would at some point work but obviously they were not working. On several visits, I wept in the doctor’s office. I told him I was extremely depressed and felt helpless about everything and that I thought I should see a psychotherapist. He told me not to see a therapist because they would try to convince me it was all in my head. I then “sneaked off” to see a famous rheumatologist in New York recommended by a friend. During my appointment, the rheumatologist told me he was a friend of the other doctor I had been seeing and had telephoned him right away to let him know I was in his office and that there was nothing he could do for me. I had been found out and would not see this TMJ specialist again because I was ashamed for not being loyal.

It took me many years to recognize the odd dependent relationships I had developed with different TMJ specialists whose treatments were not helping me. I realize now how a desperate need for relief and understanding can create unhealthy bonds that keep you tethered to a treatment that is not working.

Oddly enough, I think the New York TMJ specialist was correct to some extent about seeing a therapist. As I look back on it, I believe that most of them would have decided I had a psychosomatic pain response, but later—after I moved to Boulder, CO—I did see a therapist, who did believe I was in pain. By this time, I was clinically depressed, meaning I showed significant physical changes to classify me as having more than just the blues. It was pre-Prozac days and he prescribed the old forms of anti-depressants. These caused severe dry mouth—which exacerbated the recession of my gums—, constipation, and dizziness, but I persevered.

I saw the therapist twice a week for two years and was able to address many deep dark childhood issues that were supposed to be causing my TMJ problem. However, the pain continued. A Boulder dentist sent me to see the “TMJ specialist” in Denver at the University of Colorado Dental School. He took x-rays and created a new splint that I was to wear 24 hours a day, even when I was eating. The splint constantly broke, but for two years I wore it or some revised version of it. When I didn’t improve, they referred me to an oral surgeon. He took an MRI and said I had a displaced and torn meniscus (the articular disk of the joint) and that surgery was indicated. The surgeon gave me the names of a few of his patients to speak with. Most had had automobile accidents. None reported a significant reduction in pain after surgery. I did more research, and after hearing other stories about TMJ surgery, I chose not to have it. It was at that point that Advil came onto the market. I found it very helpful and took a lot of it. I still do.

During this time, I had many different kinds of massage and physical therapy treatments: Rolfing, biofeedback, chiropractic adjustments, ultrasound, Alexander Technique, Feldenkreis Technique, TENS, trigger point injections in the face…I loose track. I forced myself to do aerobic types of exercise hearing that this helped depression and chronic pain.

In 1990, I sat my doctor’s office weeping because I was in so much pain. She gave me a prescription for Prozac, which had just come on the market and within four weeks I had a complete turn around—at least in attitude and energy. My TMJ still hurt but I was not so dragged down and obsessed by the constant pain. I was still wearing splints—I can’t remember what dentist I was going to by then but like all of them, he was very sure that if I wore his splint it would relieve my pain. Sometimes I wore it religiously; sometimes I didn’t. Sometimes it seemed to make a difference, and sometimes it didn’t.

In 1992, I began seeing a new dentist. She had TMJ issues herself and said she loved her splint and looked forward to wearing it when she got home every night. She fitted me with another splint and over the next few years she would have a “splint equilibrator specialist” come in to adjust it. She also did some equilibration. But I was still in pain. She convinced me that I was grinding my teeth at night, and it was making my teeth loose and causing gum recession so I resentfully wore the splint—on and off. I eventually had gum grafting to prevent the total erosion of my gums. Also during this time, I had an inexplicable, extremely painful swelling below my right jaw line. After two weeks of antibiotics and pain killers, I had oral surgery to drain the infection (they had to make an incision under my chin through the skin) and a root canal, although the endodontist said afterwards there was no infection in the tooth that they thought might have been the culprit. Did this have anything to do with this story? I don’t know.

My dentist recommended that I see a cranial sacral therapist to balance the fluids in my body and move my skull plates around to relieve the pressure. I did this consistently for two years but it did not relieve my jaw pain. She then suggested that I see an orthodontist. Having already had orthodontic treatment twenty years earlier, her recommendation made me feel hysterical. After much consternation I decided to see the orthodontist—thinking that maybe by now, they have finally figured out how to do this. I saw him several times. He looked at models. He looked at x-rays. He brought in a specialist to make sure my splint was adjusted properly. He said, “We will work with you for a year, and when you’re comfortable, we will talk about orthodontic treatment.” This time, I wore the splint religiously and went back to his office every month for adjustments. But I never got comfortable.

During this time, I began weekly acupuncture treatments and had a two-hour deep tissue massage every two weeks. Sounds great but it was painful, took up a lot of time, and was costly. And I still had pain. I tried Botox injections into the muscles around my jaw, which made me look like I had had a stroke. Botox gave me a different kind of headache and didn’t help the pain in my jaw.

Somewhere in this history, someone asked if I had ever had an accident that had affected my jaw. The only thing I could think of was that when I was five years old, I fell on some slate stairs and hit the left side of my jaw, just under my lip. I bled profusely and still have a little scar just under my lip and a corresponding one on the inside of my lip. Could hitting the left side of my jaw have caused me to jam my right condyle up into the fossa thus damaging the disc?

In the meanwhile, I had begun experiencing pain in my hip—osteoarthritis. Was it from years of ballet, a ski accident, or, the fact that I had congenital hip dysplasia? In an attempt to put off hip surgery, I began prolotherapy treatment—injections for tightening loose ligaments that do not properly hold a joint together. In addition to my hip, I had several prolotherapy treatments on my jaw—the theory being if my joints were not being held together properly by my ligaments, my muscles were having to do all the work and were going into spasm. If the joint was loose, it was abrading itself by moving around too much in its socket. I could feel a difference in my hip from the injections, which helped me put off having the surgery for a couple of years, but I don’t think my jaw was affected one way or another.

At the end of 2005, I finally had hip resurfacing surgery. Neither the surgeon or the anesthesiologist told me that I would be intubated so while I was out, the anesthesiologist opened my mouth and stuck a tube down my throat. I was in surgery three hours. Not long, but long enough to create a “train wreck” in my right jaw. The day after surgery, I began having a migraine-level headache. My jaw had never hurt so much. My head had never hurt so much. I began throwing up. I tried to explain to the attending doctors that my hip was fine, but it was my jaw that hurt. I was given curious stares by the nurses. The doctor’s said I might be having a reaction to morphine so they did not give me more pain medication. I thrashed, moaned, and cried for 24 hours. At one point, I was able to reach into my purse and get to my prescriptions for Ativan and extra-strength Vicodin. I took some amount and finally slept. I sneaked more later. I don’t remember how much. The nurses wondered why my blood pressure was so low. I thought to myself at the time, this is desperation—and none of the medical personnel have any idea what is happening to me.

After surgery, my hip pain and dysfunction has decreased by 95%. I have no limp, can dance and ride my bike. My jaw, on the other hand, continues to hurt more after hip surgery than before hip surgery.

At the first part of this year, 2006, I heard about the NTI devise (which prevents your back teeth from touching at all) from the physical therapist I was seeing for my hip. She was a TMJ sufferer too. Her problems started after she had surgery to correct a congenital jaw defect. My current dentist—who I had been seeing for years—had never mentioned it to me. I assumed she must not know about it. (She told me later that she did not suggest that I wear one because it could cause my teeth to migrate.) So I went to another dentist. The NTI provided some immediate relief but—as predicted by the dentist who gave it to me—after about three weeks of wearing it at night, the pain came back. He said I needed another splint that could make me more comfortable and that after awhile we would consider crowns and bridges to create a supportive bite. I let him make the splint thinking that maybe by now, they have finally figured out how to do this. I wore it for about six weeks. I was still having pain and finally all my red flags went up about the idea of having additional major dental work to correct my bite. WHAT WAS I DOING! (This is called insanity or living in denial—when you do something over and over again with the same negative results.)

I have not gone back to the orthodontist. I do not talk to my primary dentist about my TMJ problem at all anymore. I have not gone back to the other dentist to have the latest splint adjusted because I just can’t bring myself to go back into the state of denial that would be required to act like I believed in what he was doing. I have been receiving trigger point injections in my shoulder and occipital area to help with the pain there. I see the physical therapist who is also a TMJ sufferer every week for gentle muscle massage and gentle manipulation of the jaw joint, which seems to un-stick the joint for a little while. It helps. The physician doing the trigger point therapy suggested I see a particular body worker who practices “neuro-energetic relaxation” technique. I laughed at first. Like there was something new out there that I hadn’t tried? Sure, I said. Why not? Despite my initial sarcastic response, I have found “neuro-energetic relaxation” technique gentle, relaxing, and pleasant. The body worker says she will also help me correct what she perceives as my thrusting head position that puts strain on the muscles that hold the head up and control chewing. I take Pilates classes three times a week. Does any of this work? Well, maybe. But everything has always been, well, maybe. It’s hard to tell if something is actually working or if whatever is causing the pain might be in “remission.”

I have convinced myself that no dental person can help me. But is this really true? Maybe there is someone out there who has devoted years and years to self-training—the diagnosis and treatment of TMJ disorder is apparently not taught in dental or medical school—who really knows what to do. But I’m now too suspicious and weary to try to see someone else. Maybe there are medical professionals who have developed a scientific as well as anecdotal awareness and understanding of this condition who could really help.

What I have found is that except for The TMJ Association and a few concerned and extraordinarily inspired systems scientists and doctors and research and clinical dentists, we are alone. We must work with The TMJ Association to have this disease treated as a medical—not simply a dental, at least in the traditional sense of dentistry—condition.

A side note: Although Prozac has helped me deal with the pain of TMJ, I have recently learned that it is thought to increase clinching. Before my hip surgery, I had doubled my dose because the combined hip and jaw pain was making me depressed. I have now cut the dose in half and hope this will make a difference in the pain and that I will not become too irritable and depressed. There is also evidence that estrogen is a factor (there are apparently “estrogen receptors” in the temporomandibular joint and with 90% of sufferers being women, so one would suspect estrogen is a factor). After taking “the pill” for a good bit of my life and having recently transitioned to hormone replacement because of hot flashes, I am taking myself off estradiol and progesterone to see what will happen. One last thing. I discovered recently that if I lightly press my finger onto my right jaw when I chewing, it doesn’t pop out as much, and I’m a little more comfortable.