The TMJ Association - changing the face of TMJ

TMJ Resources - Our Family - Patient Talk

Eliza

A Life's Journey with TMJ

It took many years, a lot of whining, plotting and planning before I got my first horse, Rimfire Smoke (a/k/a "Rim"), a registered Appaloosa. Prior to that, I leased horses, rode for other people and took a lot of lessons. My parents always saw the best horses had to offer; I hid the bad and dangerous.

Rim was a lot of fun to train, ride and show. He even learned how to drink from a Coke can at horse shows. My riding instructor always emphasized safety during all horse activities, and she thought I was much too relaxed with Rim.

In college I co-lead the starting of the team, showing in IHSA (Intercollegiate Horse Show Association) shows, and was team captain my freshman year. The team found a farm, just outside Greensburg, PA, where the owner raised Quarter Horses and ran a boarding stable. One boarder allowed the team to use her horse "Annie" to practice during the week.

I tried Annie for the first time on an outside course, but saw she didn't have a noseband on her bridle. When I asked the owner about the lack of a noseband, the explanation was that it irritated her skin. After warming up, I started over a few small jumps then tried something a little higher. After the higher jumps, Annie bucked a few times. I pulled her up and cantered a few circles. On a smaller circle, Annie dropped her inside shoulder and began bucking and spinning. I had no control since that saddle had slipped, and without a noseband, the bit slid through her mouth. I remember being afraid of not falling free of the horse and tack. I made sure my feet were out of the stirrups, and that my hands were free of the reins as I went off the rear of the horse, landing on the back of my head, with my feet high in the air, crushing my chin to my chest upon impact.

As I got up off the ground, the owner of the horse and the coach came running to me as the horse was running up to the barn. The reins were flying all over the place, the saddle was under her belly, and the stirrups were flying free. All I could think about was her legs, the reins and those stirrups. The owner of the farm caught her at the barn, and luckily Annie came away with just a few scratches.

The next morning my neck had swelled quite a bit, and my roommates had to help me out of bed. I was so sore I could hardly move. I didn't seek medical attention the day of the accident, but the next morning, when my mother called and I couldn't get to the phone, my roommate "spilled the beans." My mother insisted I see a doctor. I went to the health center at the college, where the doctor told me to go for a skull series, which I put off. I didn't know how to get to the hospital and wanted to get to the barn, because we had a show that weekend.

My mother came to the horse show that followed my accident and wouldn't let me ride if I hadn't seen a doctor. I had seen a doctor, but didn’t get the recommended x-rays. I rode in two classes, getting a fourth and sixth, but had to use a large safety pin to close my shirt collar because of the swelling.

Prior accidents (kicked, dragged, bitten, thrown, etc.) went untold because I didn't want to go to the doctors and was afraid my parents would make me quit riding. As I later found out, my parents would have kept me away from horses had they known about any of my prior accidents. All these old injuries did have a compounding effect.

The riding accident at college was just "the stick that broke the camel's back." It started with earaches, which were treated as ear infections, etc., but the pain got worse over time, as I described as, "A skewer going into my ears." My parents took me from one doctor to another to try and find a solution. Then I developed digestive and neurological symptoms, and became depressed.

I began to have trouble eating while still at school, shortly after my accident, and lost about 40 pounds. As time went on, food wasn't worth the pain. There was a definite connection between eating and pain, sharp pain. I dropped a lot of weight in a very short period of time. One ENT told me I had TMJ, and that I needed to see a "Specialist ". Little did I know, at that time, that there is really no such specialty for TMJ disorders.

Because of the weight loss and the need to see my doctors so often, I didn't return to school in PA for the spring semester of my sophomore year. I had been getting sick a lot, picking up every germ that came around. My friends use to bring me ice cream just so I could gain weight and stay at school; they were really great friends.

Early in my TMJ treatment, I still rode but also started falling more. My equilibrium was off and I was getting dizzy in addition to having vertigo. It was during this time that I came to understanding the difference between dizziness and vertigo. For the first five years of conservative therapy my orthodontist tried everything, splints, braces and physical therapy. It seemed like anytime I felt better, and rode, I fell again and got worse, so my doctors and parents insisted that I quit riding and stay out of the barn. I was devastated.

Not only was I in pain, forced to stay out of the barn, but also conservative treatment included wearing an ugly splint 24 hours a day that looked like a mouth guard. It was awkward and made talking difficult. I was also very self-conscious, especially dating. I liked to feel better, but was depressed about how I looked, the weight loss, then the weight gain. I eventually developed eating disorders to not only control my weight, but the craziness around me.

Doctors were telling me I was stressed, that I shouldn't be in so much pain. I went to psychologists, psychiatrists; I had biofeedback, learned relaxation techniques, etc. There were some doctors who agreed that my problem was physical, and by fixing my malocclusion the problem would be resolved, and some who said it was psychological. My parents were on both sides of the fence.

To clean this "splint", a huge piece of acrylic, I had to use Efferdent, a denture cleaner. To deal with the dietary issues I had to use Metamucil, fiber therapy, and to gain weight I used Ensure. I remember standing in line at the drug store, on my 19^th birthday, buying Efferdent, Metamucil and Ensure for myself. I wasn't buying it for my parents or my grandparents; they were for me on my 19^th birthday.

At the time, it was difficult to find someone who could take and interpret TMJ x-rays, so I had to go to Ardsley, New York, about an hour away. Even today, not many radiologists, and other healthcare professionals, know how to read imaging of the TMJ. Many of the images taken in the 1980's were not covered by insurance.

Unless I had surgery to correct the TMJ injury/disorder, the insurance would not cover any part of treatment. Many of the images and x-rays quickly used the maximum available from dental insurance. Even much of the dental policy wouldn't cover TMJ because they said it was a medical condition, but the medical insurance wouldn't cover it because they said it was a dental condition. The expense of treatment, etc. did put a lot of stress on me because during this time, my parents were paying my bills, and I am one of five kids. My other siblings saw the money going toward my problems and resented me for it. These were heavy burdens to carry, in addition to having an injury no one really new much about.

After a suicide attempt, a psychiatrist recommended I see a group at Yale-New Haven Hospital. At Yale, I was put through a lot of tests, and was seen by several doctors of various specialties. They concluded my jaw joints were permanently locked shut. The only way to get my mouth open was to surgically fix the joints. On I went to my first surgery, December 12, 1986. Prior to surgery, I hadn't been able to turn my head enough to see over either shoulder for about five or six years.

My first surgery lasted about 8 hours, and I knew about a possible need of some sort of implanted material. The implant would either be permanent or temporary, to help the joints heal, but allergies never crossed my mind. The implants turned out to be Silastic sheeting and after 3 months, needed to be removed, something that could be done in the doctor's office. I had the surgery, but when I woke up, my doctor told me that one implant had broken and they would have to "fish" for the rest during another procedure in the hospital. Five days later, I was in the OR having the rest of the implant removed. The pain felt as if they had dug for the implant.

With a lot of physical therapy, I was almost perfectly fine, even working and going to school through this entire experience. I was going to school at a local college, and I worked part-time in an accounting department. School gave me a goal to reach. After this first surgery, I worked hard thinking that someday I would be able to ride for pleasure again.

That surgery lasted a couple of years, but in 1988, I began to scar down; the joints became immobile due to scar tissue. My doctor recommended more surgery, this time arthroscopic. I consulted other doctors about the need for surgery and got a comfortable feeling that it was necessary. This seemed to happen at least every 2 years, but it also happened as much as six months apart.

I also developed swallowing problems, choking a lot. I had learned to use my tongue so much to "chew" my food; muscles that are normally weaker became strong. I was also not chewing food but swallowed more food whole.

In 1994, my jaw joints became more degenerated and required reconstruction. During this surgery, ear cartilage was used for one side, while the other side was cleaned out using an arthroscope. In 1995, a muscle flap graft was used in the joint that had been cleaned out in 1994, and the ear cartilage joint was cleaned out this time. Those graphs didn't last long.

Between these two surgeries, I ended up in the emergency room with a GI bleed due to the NSAIDS I take for joint inflammation. They couldn't use an endoscope to stop the bleeding because they couldn't get my mouth open. My hemoglobin had gotten to 7.0 and I required 2 blood transfusions. At the end of the five-hour surgery in 1995, a gastroenterologist was able to use an endoscope to find a possible source of my GI bleed

As time went on, my opening closed down again, the pain got worse, my balance got worse, and I eventually found that my joints had a bony fusion. I no longer had jaw joints. My mandible and skull were now one bone. I wasn't getting anywhere. My doctor didn't want to do anymore to help me for fear of opening a "can of worms." But it was getting obvious that something more needed to be done. I was getting thinner, and it was getting more difficult to eat. My fear was getting to the point of needing a feeding tube because the only thing that fit between my teeth was a flattened straw.

I went to see many prominent oral and maxillofacial surgeons in New York and Connecticut. Because of my case history, and the kind of surgery I needed, they all referred me to a surgeon in Texas. I didn't want to go to Texas. Then I found my current in Boston.

Another doctor, who has worked with my surgeon in Boston on several cases, diagnosed an old neck injury that he believes I started with. Both he and my surgeon believe my jaw joint pain was actually coming from the neck injury. The imaging techniques and state-of-the-art for TMJ diagnosis were not able to diagnose a C1 neck injury in the 1980’s.

I had my ninth surgery in Boston, July 1998, a full reconstruction using calverial bone, skull bone. They could have used total prosthetic joints but I was very skeptical about implants because of all the history of problems and lack of research, and my family's allergies to metals and plastics. I went for the bone graft. The OR time was 16 hours, followed by a six day hospital stay, and a radiation treatment.

As understood about bone grafts, they can fail. In 1999, my right side graft had failed and there was an unquestionable need for a questionable total prosthetic device. This tenth surgery went well, but pain still lingers. With all the surgery, facial nerves have been damaged. I now have some facial paralysis and nerve pain, including Trigeminal Neuralgia. I haven't had any problems with the implant, but now left joint is now in need of being replaced. Another surgery is being planned, but hopefully this will be the last, a hope I've had for a long time.

Shortly after my tenth surgery to implant a total prosthetic joint, the FDA pulled the device off the market because the manufacturer lacked sufficient evidence that the device was safe and effective. It has since been reinstated, but due to unusual circumstance that aren't related to proof of safety and effectiveness.

I have tried to ride again, incredibly, but had a problem with my right side weakness and the motion. But after one doctor told me his vision of my medical future, I was tired of spending all my money on medical bills, and purchased Shetland Ponies, settling for just being "the owner." I hired trainers, handlers, etc. This was hard because I was very particular about how I wanted things to be done. One pony went all over the country showing in halter classes and becoming the National Grand Champion Classic Shetland and Pony of the Year.

A major problem this entire time was medical insurance. Many insurance policies, especially self-insured plans, can specify they exclude coverage of TMJ treatments. I have used 5 court cases to strengthen my case for insurance companies to pay my claims, but still, my out-of-pocket expenses have exceeded $250,000. I have became so tired of fighting for insurance coverage I am either not a nice person to deal with or adopt a defeatist's attitude. Going back and forth confuses many, including myself. I have the fight in me; just don't think so 24 hours a day, 7 days a week.

Throughout this entire ordeal, my faith in God, myself, in doctors, and in my parents has been greatly challenged. I've questioned every aspect of my life, my direction, my choices, etc., mostly to ask what I would have done differently. The hindsight is OK, but it is that "hind", in the past where I can't do anything about it except learn and try to understand. I have recited the Serenity Prayer over and over again, many, many times. "God grand me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference." What I have done is to become better educated and become active in a nonprofit organization very meaningful to me, The TMJ Association.

The TMJ Association is a patient advocacy organization trying to get the truth about TMJ to patients, their family members and to healthcare professionals. It is from correctly done research that effective diagnostic and treatments come. They have done an exemplary job getting the attention of the FDA and the National Institutes of Health to look at TMJ diseases and disorders as a serious health problem. Much of TMJ is greatly misunderstood especially by the medical profession. Education is vital, and I hope to be part of the effort that brings the information forward. For my own case, it is to late, but future TMJ patients will benefit from gains made today.

My crusade is to bring my experience to others so they have the information to make better choices and don't have to give up their horses due to a lifelong disability and struggle from TMJ/neck injuries. I am not angry at the horse I fell from at college, but I am angry with her owner for not noticing the horse was in pain when bending her back. It's with knowledge of the horse, both physical and psychological, and knowledge of our own susceptibility to injuries and diseases that we can learn to be safer with and around horses. I hope every horseman will help us all by becoming active in all aspects of injury prevention. Support organizations that teach young horseman, and those than are looking for ways to prevent injury and better the future for all of us, like The TMJ Association and the American Medical Equestrian Association.