TMJ Resources - Our Family - Patient Talk
I just thought I would add my story to your collection! Thank you for your Web site, When my husband found it, in an attempt to find me some help, I checked it out I felt so relieved to hear that I'm not crazy.
Here is my story.
I have lost all faith in the medical profession since my headache began eight years ago. The first doctor I went to see said, "I don't think you have a brain tumor, but we should do some tests to be sure." Having only been 15 years old at the time I was scared to death, as you can probably imagine.
Things only got worse from there. I was finally diagnosed with TMJ (most likely it was caused by the removal of some teeth and the shifting of the back teeth forward by braces, a painful process in itself) after CAT scans, MRIs and many other tests. The doctors tried many things that only seemed to cause more pain, which they told me was good, it meant the treatment was working (yeah right!)
First, I was referred to a jaw specialist who recommended I have arthrocentesis done. I agreed and I was only able to open my mouth wide enough to fit in a baby spoon in and I had to live off of spaghetti-O's and Jell-O for four weeks. After that I had lots of physical therapy, and what I like to call shock treatment where they gave me this device to wear that sent shock waves into the joint to massage them. This caused everything to have a metallic taste afterwards. None of this did any good so we moved on to splint therapy. I was given a bite plate to wear all the time, but it caused me too much pain to eat after I had worn it, so the doctor had me just wear it at night, but then in the morning it caused excruciating pain for hours after taking it off. I came to the conclusion that I was much better off without it and stopped wearing it.
The pain never got better and anything they did only seemed to cause me more pain. The doctors told me that they couldn't do anything more for me and that I would have to learn to deal with the pain. They treated me as if I was crazy and that I wasn't really feeling pain. I was never given any medication to help the pain except Advil, which does nothing at all. I didn't go to the doctors again for treatment for about five years.
Last year at the age of 22 the pain finally became unbearable for me. I had to go to the emergency room and was put on major pain killers (that still didn't take the pain away completely) until I went to see a new specialist who tried to put me through the same process again. After four visits I stopped going. I have decided I need to venture out of my state, because in Vermont there are only 2 doctors who deal with TMJ and neither knows any more than the other.
I got married last month and I feared that I was going to be in too much pain to enjoy my wedding, but luckily it was a good day. Although after beaming all day I have to say I was hurting really bad. My poor husband puts up with a lot, he rubs my jaw and head, he deals with my bad moods and constant complaining, he is a saint.
I'm afraid to have surgery after all the horror stories that I've heard on this site, and until now I hadn't even heard of implants.
I'm not giving up hope, but I don't have much left. The older I get the worse the pain is and it is already at the point where it is hard to get out of bed some days. I'm only 22 and I feel like an old lady.
I was going to write that it is nice to know there are others out there like me, but really it isn't. It is sad to know that there are so many of us out there suffering from this painful disease that most doctors don't even seem to take seriously.
Jodi (US)
