TMJ Can Ruin Your Day

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There is a condition that, although not serious enough to kill you, can pretty much take over your life. That’s what happened to me. My epic battle with TMJ (temporal mandibular joint disorder) began quietly when I was in my early 20s. I had just moved to Los Angeles and needed to find a dentist.
An old friend from back East told me that her dentist was terrific. So I made an appointment. His office, about an hour’s drive away, was located on an upper floor of a Santa Monica high rise overlooking the Pacific. You could see the ocean from your chair as you were waiting for your mouth to numb up.
Before the initial exam, the receptionist handed me a questionnaire. One of the questions asked whether your jaw ever clicked. Why yes, my jaw did click. How often? Fairly often.. Hmmmm, let’s take a look.
And that marked the very beginning of my decades-long tango with TMJ.
This upscale dentist to many celebrities was very pleasant and sort of funny. He had a very reassuring presence which is always a plus when you are going to do potentially painful stuff to someone’s teeth. I trusted him and I liked him.
I also believed him when he said he could fix the clicking in just a few minutes and that it wouldn’t hurt a bit. He said the clicking was an indication that my bite had shifted. So he reshaped a couple of my teeth clearing the way for my bite to fit together perfectly. And that was it.
About a year later, the clicking returned. Again, he reshaped my teeth. Again, it worked well. But, the popping came back louder and morefrequesntly than before. Still, he reshaped my teeth and relieved the symptoms. This went on for quite a while.
Then I started to wake up in the morning with a sharp pain on the side of my head. As usual, I went to my appointment and the dentist checked my bite. This time, a ominous look came over his face.
“I can’t help you anymore.”
“Why not?”
“Because it is too far gone. You will either have to live with it or you will have to have an operation.”
I was stunned. What was he talking about? Now, when it really hurt, he was backing out? Surgery? Not likely. Unknown to me at the time, surgery was all the rage for TMJ because a miraculous new implant had been developed that could take the place of worn down padding between your jawbones. Sadly, the implants were fundamentally flawed and would suddenly splinter inside the patients’ heads. There was no effective treatment for the resulting painful condition. Somehow, I instinctively avoided that disaster.
The dentist told me there was a terrific TMJ expert whose lecture he had recently attended. Unfortunately, that dentist was in Chicago. What a coincidence! I was about to head back to Chicago to visit my family. Ironically, that same dentist was also my mother’s dentist. So I made an appointment.
After traveling two thousand miles to see this expert with great expectations that he could fix my jaw, I was not all that concerned when the exam took a long time. Afterwards, the expert pronounced me “a walking pathology.” In fact, he wasn’t certain that any surgery would actually help. He also told me that trying to fix the problem would take several years of treatment at a cost of $10,000-$20,000. I left his office in a fog.
I was in pain, suffering from a condition that usually arises from serious trauma like a car accident, despite the fact that nothing of the sort had happened to me. What was going on? This was now permanent and unfixable? The expert’s shrug told me that I was on my own.
Back in Southern California, I had recently moved further away from the city and finally found a local dentist that I liked. I told him about my dilemma. He asked if I had spoken to a TMJ specialist. There were TMJ specialists? I had been told only that my next stop was surgery. No, he said, here is the name of someone who is right in this area.
When I first saw this specialist, he explained to me that the process would take quite a while. First, he would fashion a series of mouth splints that would slowly pull my jaw back into alignment. Once that had been accomplished, we would discuss my options for the next phase.
That sounded reasonable. And so, for the next few years, I dutifully appeared at his office three times a week for the necessary tweaking of the splints. He insisted that I see a chiropractor for my now-constant neck pain. I had never been to a chiropractor and have never needed one since. But this guy changed my life in a very positive way. Without using any invasive techniques, through the use of heat, relaxation, special machines, counterweights and the famous cracking of the joints, he eliminated my neck pain.
That was about the same time that my jaw was finally back in place. But, to my horror, none of my teeth touched. There was about a quarter inch of air between my back upper and lower molars. The specialist explained how that had happened. By reshaping my teeth, the first dentist had relieved the strain on my jaw muscles following the slight shift in my bite. Once the jaw muscles got used to the new position, which placed even more strain on them, they would once again seize up. And so on until my jaw was so far out of whack that the first dentist hit a dead end. He was done. Now it was my problem.
Before moving on to the next phase, of which the specialist seemed to be far less assured, he started missing appointments. After a few of those, I decided it was time to switch specialists. It turned out that he had a serious chronic condition that no one had mentioned.
My next stop was a local orthodontist who was the go-to guy for the botched work of other dentists. I certainly qualified. This new specialist, I’ll call him Dr. Getwell, sat me down with my new MRI pictures and we talked. I needed surgery which could be performed at UCLA and it would only cost $10,000. Right off the bat, I was not on board. OK, he said, there are other ways to approach this. I started to feel a little bit better. It would be a long process, he said, but we can fix this. I felt a lot better.
The treatment began with yet another mouth splint. I wore it for several months. Then came the heart of the treatment, orthodontic braces, again. I had hated every single second of wearing braces when I was a kid, I wasn’t going to like it any better as an adult. In fact, I spent my 40th birthday wearing the so-called invisible brackets. Of course, they were completely visible, they just weren’t metal. Actually, braces these days are a lot kinder to the patient than they were long ago. No more metal bands around every single tooth, just little brackets that are strategically glued to your teeth and the wire that runs through them is held in place by itty bitty rubber bands. You can get just about any color rubber band, which is just great for kids. Not so much for grown women.
So my regular visits to the orthodontist were now down to about every 3 weeks. Not bad, but this went on for a long time. It took four whole years for my braces to do their job, partly because I was an adult with adult dental work, partly because there was a mighty big job to do.
Early on, Dr. Getwell had been able to relieve most of my pain, although the headaches were still so severe that I carried a chemical cold pack in my purse. Eventually, most of the pain faded away.
One other issue stubbornly hung over my head and that was the refusal of my insurance company to reimburse me for the treatment. Those were the bad old days when the patient paid the doctor and then submitted a “superbill” for reimbursement. The insurance company had paid the first few bills. Then they started to ask for more information along with the bills. Then they started losing my bills. Then they just ignored me both by letter and by phone. They owed me $3000 which was a huge chunk of change at the time. They had denied payment several times and refused to allow me to appeal it.
After a long chat with Dr. Getwell, I decided to go to small claims court. I spent many hours organizing all of the bills and correspondence and phone calls with the insurance company. I cried a lot, too. Because TMJ is not just a physical condition, it is an emotional issue. I felt all alone. I didn’t trust anyone and it seemed that every time I went for some treatment, I ended up in worse shape than before. I had been subjected to malpractice and lies. I had been abandoned by my well-paid professionals. My head hurt all the time and I couldn’t chew without pain. I had little life to share with my growing daughter because I had to spend so much time at the dentist’s offices. I was not often in a very good mood. And I looked stupid and ugly with my bulky and yellowish braces. At least, that was how I felt.
I won my case in small claims court. I not only won the money that the insurance company owed me, the magistrate ordered them to pay me double that amount. In court, they had no defense whatsoever. They admitted that it was a covered treatment, that they had paid on a few of the early claims, and that they had lost most of my correspondence. On the very final day that they could appeal the decision, they finally coughed up a check.
That was one sweet victory. But it was a battle that was totally unnecessary. I had been beaten down by the very people who were supposed to be my advocates. It was all incomprehensible. How I wished I had just ignored the question about a clicking jaw.
After I finally had my braces removed and had paid all of my bills, I still had residue pain. Dr. Getwell was very understanding and gave me a prescription for easing the muscle spasms that still bothered me. Slowly, over the course of several years, even those spasms stopped. I no longer need any pain medication and usually I don’t even think about what happened. Sometimes, it seems like it happened to someone else.
So what have I learned from this experience which, did in fact, cost about $20,000 in the end? Well, I always vet any doctor who has been recommended. If I am unhappy with the way I am being treated, I bolt without so much as a “see ya later.” I am my own best advocate. I have learned to accept that doctors are just people and there is a difference between an honest practitioner who makes an occasional mistake and one who has an agenda. Experience counts for a lot. If I don’t understand something they are telling me, I now listen carefully and then ask questions. If I still don’t understand something, I look it up. If I still don’t get it, I feel that I was not given the straight story or some important information was omitted and I sometimes change doctors. And I don’t give up.
For every bad experience I had with incompetent and less than truthful dentists, Dr. Getwell restored my faith in professionals. He saved me from a lifetime of chronic pain and I will always be grateful. Plus, my teeth look great.
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