This week has been a pretty painful week and whenever I have bad days I usually end up here so that I can read other people’s stories. It doesn’t really help the pain, but it helps me stop feeling so sorry for myself for a while when I read the stories of people whose suffering far surpasses mine. I keep waiting for some conclusion to my jaw problems before I tell my story, but I am beginning to think that if I wait, it will never be told.
I have suffered from jaw pain for several years. In the beginning it was only bad during, and a few days after, a trip to the dentist. Over the past couple of years, the ability to open my mouth wide has gotten worse and worse until the dentist I was using got verbally upset with me when I could not open my mouth wide enough to do a routine cleaning. Prior to this I had complained of pain in a tooth that he said was dead and there was no way I could feel pain in it. He ridiculed me and dismissed my concerns. I shopped around and found a dentist that is very sympathetic and helpful. He is patient and kind, but had no real experience with treating jaw pain, so suggested that I go to my doctor and get a referral for an oral surgeon, which I did. The oral surgeon had a beam-cone scan and x-rays done and then stated that there was nothing to be found. He scheduled me for arthrocentesis and when that did not help, he said there was nothing more to be done.
By this time I was in constant pain, could not open my mouth far enough to get my little finger in and had lost close to 50 pounds. My PCP referred me to a dentist that specialized in TMJ. After much difficulty with the oral surgeon’s office, he finally got a copy of my records and found that the cone-beam scan and x-rays indeed showed that I had advanced osteoarthritis in both joints to the point where both the condyles were flat and out of place. He made a mold for a splint and suggested I try to find another surgeon. He was super nice and advised that if the splint made my jaw hurt worse, to stop wearing it immediately. It did, and I did.
The next several months were very frustrating trying to find someone to take a look at my condition. I also complicated everything by taking too much ibuprofen and messed my stomach up, which made my jaw worse when I was constantly throwing up.
I finally obtained an appointment with an oral surgeon at UCSF, 3 hours away from my home. He was very nice and ordered an MRI to see where the disc placements were and said that he would contact me once he reviewed them. That was over six months ago. At one point one of the residents contacted me and stated that they had lost the MRI disc and asked if I could obtain another one from the local imaging center, which I did and sent to them in the mail. I called and confirmed that it was received. I read the MRI report and it stated that the discs are nowhere to be seen, so I know that there is something going on in there. I have called and emailed the hospital and doctor and have never gotten a return call or email. The nice specialist that referred me has since retired and I have not been able to find anyone else to help. I do go to a pain management specialist, which is a godsend. I cannot imagine life without some relief, even if it is fleeting.
I do not like to whine and complain, besides, it makes my jaw hurt. Hah.
I am thankful for a great husband and friends and neighbors who see through my humor and smiles to see the pain and suffering and do not turn away from it. I am thankful for my horses and dogs who keep me active and remind me that there is still some happiness to be had. And most of all I am happy for today’s technology that provides sites like tmj.org so that we can all share our stories.
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