TMJ Friends

My story started almost a year ago when I went to the oral surgeon to have a lesion removed from my tongue. I am 40 years old. The oral surgeon told me my upper wisdom teeth were rotted and I should have them extracted. They were fully grown in, not impacted and I had never had any trouble with them, but truth be told, I was afraid to have the lesion remove from my tongue while awake so I agreed to have the wisdom teeth done so I could be but to sleep. It turned out the lesion was pre-cancerous. I vaguely remember the OS saying he had to really wrench one of the wisdom teeth out. That is what started by journey to hell. Several days later I returned to the OS complaining of pain in my jaw. He said I must have a dry socket and wrenched my mouth open to put some medication in the socket left by the removed tooth. He got aggravated with me because I could not open my jaw wide enough so he could do this easily. There was no dry socket and the medicated gauze promptly fell out. Several days after that I returned again complaining of continued pain in my jaw. He put me on valium and that was the first time I heard the word TMJ.

He too felt it was TMJ and I had my first of 3 arthrocentesis surgeries last November. It was horrible. My pain continued and I could not close my mouth for a week. I had 2 more arthrocentesis’ done in February and April. I quit my job and dropped out of school. I was on constant pain meds and every muscle relaxer out there. Nothing helped. I had an MRI done which showed “nothing conclusive”. By now my opening ability was between 7 and 10 mm, I could eat strictly soft foods and was in pain around the clock. My primary care doctor started treating my like some type of drug seeking junkie.

Finally I had arthroplasty in June. My doctor found bone spurs which he filed down, recontoured my jaw line because it did not “look right” and sewed my disc in place. Recovery was painful.

I still continued to have constant pain but my opening ability increased to 32mm - WOW!

I had trigger point injections because I started having severe headaches and my muscles seemed immune to any type of muscle relaxer. A horrid grinding noise started in my jaw whenever I eat or move my jaw from side to side. I was in physical therapy following surgery which considerably helped my mobility but did nothing for pain reduction. My physical therapist asked me my goals for physical therapy and I told him I want to be able to eat a big mac and steak again. I suceeded in neither of these. The night bite guard that I had been wearing prior to surgery no longer fit right but I was told to keep wearing it. I continued to complain about the bite guard not fitting right and making my bite seem even more off. My OS finally told me to discontinue using it. WOW what a difference this has made. Two nights not wearing it and my bite almost felt normal again and my pain was reduced in half.

My OS and I have concluded that there is nothing else he can do for me and I am seeing a new doctor in October. He is a renowned specialist in TMJ. I am looking foward to meeting with him and hope he can help me. My new found pain reduction has changed my life and I almost feel normal again. The pain is controllable with medication when before taking vicoden was like taking an M&M. I hope I can return to school next January and start being the mother I have not been for almost a year. That is my story.

I hope to God this is just a “blip” in my life. But judging from reading tons of info on TMJ it sounds like it will be a life long struggle with good and bad periods.

I am updating my story, May 6, 2005. Unfortunately, this turned out not to be just a blip in my life. The new doctor turned out to be a worse nightmare than I could have imagined. He yanked me off of my meds and told me to take high doses of ibuprofen. That landed me in the hospital with dehydration from ripping my stomach to shreads and my bowels to water. Needless to say, I did not return to him. I was planning a trip to Boston to visit my family, my dad had surgery for tongue cancer and my grandfather had just passed away. I decided to see a doctor up there. I went to a doctor my dad had seen for his tongue cancer. He is a jaw reconstruction specialist. Before he would see me, he set up an MRI and a CAT scan and an appointment with a pain management specialist. When I got there, I had the scans and met with the pain management specialist. What a wonderful and caring doc! I had just about given up hope of ever finding a caring doc. After the scans I met with the surgeon to be evaluated for total joint replacement.

The surgeon did not feel I was a candidate for it - yet. I did have a chunk missing out of my bone and had scar tissue in the joint from previous surgeries. He said if he did surgery on me, he wanted it to be the last one and he wanted it to improve my pain and function and not make things worse.

So at this point, I have no future surgeries looming. I am being treated for pain only and had a new splint made to help avoid any further damage to the joint. It is not going to fix me. Nothing is going to fix me. I know that and the docs know that.

I have to travel to Boston once a month to see my doctor for now. But it worth the hassle.

Update, May 2008:  Amy contacted me to let me know that she has tapered off of all her opiate medications.  She says that she feels no worse than she did on them, and is really very pleased with the results.  She is working part-time as well as taking care of her kids, and feels very functional.  Congratulations, Amy!

If you have any questions for Amy, please either post a comment, or visit our questions page.

I am not really sure where my story begins, but I do have two suspicions. One is in 1988, I had to have my wisdom teeth pulled because they were causing problems. They were very impacted, and I could not open my mouth more that 10 mm. After they were pulled, I then had full range of motion.

The next suspicion was in 1998. I was hit very hard in the back end of my husband’s pick-up truck and hit my head on the back glass. After the accident I had severe headaches for 3 weeks straight. Nothing I did would relieve the headaches. I couldn’t even think for myself. My husband finally insisted that I go to the emergency room to have a mri done. All they scanned was my brain, and it only showed a mild concussion. They gave me some pain meds and sent me on my way. The headaches did go away for about a month, but then returned with a vengeance.

Now I have headaches every day. This is the year 2006 people. My jaws started popping about 3 years ago, and I never thought any thing of tmj til I went to the dentist 2 years ago, and he told me that I might have tmj. He sent me to a specialist who I have been seeing since. Been through the splint therapy and still going thru it and the so called pain therapy. My specialist finally agreed to send me to get an MRI. Got my reading back on Tuesday April 4th. The mri showed a torn ligament in my left jaw as well as spurs on both jaws and total derangement of both discs and of course the adhesions. I am actually relieved that it is this and not brain tumors. ( you see my dad died with a brain tumor in 1989, and my sister is in remission from brain tumors.) Now, the next step for me is to see a shrink, to see if stress is the cause of the problems at hand. The date for that is May 1st. My doc wants to do surgery. However, I am planning on a second opinion first. If it will make the headaches go away, I do want to do the surgery. We will see what is to come. By the way my left jaw has gone into lock down. My right, well lets just say can’t do much without the left. There will be more to come as I journey through this thing called TMJ.

To read more stories of people like you, visit our TMJ patient story page.  As always, if you have any questions, comments, suggestions, or tips, let us know!