My TMJ was not TMJ

Discussion in 'Fibromyalgia Main Forum' started by dd, Sep 26, 2002.

  1. dd

    dd New Member

    Hi All - I am new here and have only posted a few times. I love this board and all the information.

    The post about TMJ caught my eye because I just had surgery in August because of a condition called Eagle's Syndrome. I was first diagnosed with TMJ and then found out that it was this Eagles's Syndrome.

    Last year my jaw pain and headaches were getting so bad that I decided to seek an oral/maxofacial doctor to help me. My jaw would click all the time and I also had severe neck and shoulder pain. I also could not turn my head without severe pain. I could barely open my mouth wide enough to fit a spoon in it.

    On my first visit they took x-rays and did all the usual questions about symptoms. Of course my jaw clicked on command for the doctor and he immediately said that I had TMJ. They came to the conclusion that my TMJ was caused from my over-bite. They set me up for another appointment to fit me for a bite splint that they said would help re-align my mouth and lessen the pain. I went thru the fitting and all that stuff and got my splint. I was to wear it 24 hours a day except for when I was eating or brushing my teeth of course. Well, after wearing it for about an hour I had the worst migraine and jaw pain that I have ever had. I called the doctor the next morning and they wanted to see me in the office. When I got there the doctor said that all I needed was an adjustment of the splint. So, he did his thing and sent me on my way with the same instructions to wear it 24 hours a day. I tried it again and once again I had the same pain. To make a long story shorter, I had the spint adjusted 2 more times still to have the same pain. The doctor told me that I should not have any pain at all and that it should have been releiving the pain. He was confused as to why I was still not tolerating the splint so he did a PANORAMIC X-Ray of my mouth. This is a different type of x-ray than the usual run of the mill ones the dentists usually give. When he came back in the room I could tell that there was something wrong just by the look on his face. He showed me on the scan that I had a bone on each side of my jaw that was "elongated and calcified". He explained to me that these bones are only supposed to be about 3/4 of an inch long and mine looked like they were over 2 inches long. He told me that I had what is called Eagles Syndrome. This is a rare condition where the styloid bone becomes calcified and that it can mimic TMJ. He told me that I would need surgery to remove these calcified ligaments. He also told me that generally people only get it on one side but that I had it bi-latterally. This was why I could not open my mouth wide and why I could not turn my head without pain. Everyone has these bones. They are located behind the jaw and almost right under the ear on each side.

    His conclusion was that the car accident that I was in in 1984 possibly fractured the bones and that the Fibro made the ligaments calcify.

    I had the surgery and feel so much better. The surgery itself was a b..ch and I felt horrible after. I am still dealing with the Fibro flare up from the surgery but the pain in my jaw and neck are gone.

    I just wanted to throw this out to all of you that have been told you have TMJ. If your TMJ is not any better after having a bite splint or other therapy I would check into this. My doctor told me that he has seen this with people that FM.

    Take Care,

    Debbie
  2. dd

    dd New Member

    Hi All - I am new here and have only posted a few times. I love this board and all the information.

    The post about TMJ caught my eye because I just had surgery in August because of a condition called Eagle's Syndrome. I was first diagnosed with TMJ and then found out that it was this Eagles's Syndrome.

    Last year my jaw pain and headaches were getting so bad that I decided to seek an oral/maxofacial doctor to help me. My jaw would click all the time and I also had severe neck and shoulder pain. I also could not turn my head without severe pain. I could barely open my mouth wide enough to fit a spoon in it.

    On my first visit they took x-rays and did all the usual questions about symptoms. Of course my jaw clicked on command for the doctor and he immediately said that I had TMJ. They came to the conclusion that my TMJ was caused from my over-bite. They set me up for another appointment to fit me for a bite splint that they said would help re-align my mouth and lessen the pain. I went thru the fitting and all that stuff and got my splint. I was to wear it 24 hours a day except for when I was eating or brushing my teeth of course. Well, after wearing it for about an hour I had the worst migraine and jaw pain that I have ever had. I called the doctor the next morning and they wanted to see me in the office. When I got there the doctor said that all I needed was an adjustment of the splint. So, he did his thing and sent me on my way with the same instructions to wear it 24 hours a day. I tried it again and once again I had the same pain. To make a long story shorter, I had the spint adjusted 2 more times still to have the same pain. The doctor told me that I should not have any pain at all and that it should have been releiving the pain. He was confused as to why I was still not tolerating the splint so he did a PANORAMIC X-Ray of my mouth. This is a different type of x-ray than the usual run of the mill ones the dentists usually give. When he came back in the room I could tell that there was something wrong just by the look on his face. He showed me on the scan that I had a bone on each side of my jaw that was "elongated and calcified". He explained to me that these bones are only supposed to be about 3/4 of an inch long and mine looked like they were over 2 inches long. He told me that I had what is called Eagles Syndrome. This is a rare condition where the styloid bone becomes calcified and that it can mimic TMJ. He told me that I would need surgery to remove these calcified ligaments. He also told me that generally people only get it on one side but that I had it bi-latterally. This was why I could not open my mouth wide and why I could not turn my head without pain. Everyone has these bones. They are located behind the jaw and almost right under the ear on each side.

    His conclusion was that the car accident that I was in in 1984 possibly fractured the bones and that the Fibro made the ligaments calcify.

    I had the surgery and feel so much better. The surgery itself was a b..ch and I felt horrible after. I am still dealing with the Fibro flare up from the surgery but the pain in my jaw and neck are gone.

    I just wanted to throw this out to all of you that have been told you have TMJ. If your TMJ is not any better after having a bite splint or other therapy I would check into this. My doctor told me that he has seen this with people that FM.

    Take Care,

    Debbie
  3. klutzo

    klutzo New Member

    It took me 2 months and many visits before my splint caused less pain rather than more, but once it was properly adjusted it helped immensely and I found I only need to wear it when lying down.
    No doubt there may be someone here who has what you have and I hope they see this. I had never heard of this, and found it very interesting.
    Thanks again,
    Klutzo
  4. JaciBart

    JaciBart Member

    Thank you so much for the info, I see my dentist next wk, I will put this out there & see if he thinks I am nuts. Worth all of checkin into, the neck pain is the worst, I can hardly stand it.

    I just get so carried away, it seems like everything I read I think, yup, that is me.
    It makes sense and I do appreciate it, I don't mean to sound ungrateful, I just get frustrated with always having to spend so much time & energy on this DD.
    Feels like there is no end to what it is going to destroy next.

    Jaci
  5. JaciBart

    JaciBart Member

    Thank you so much for the info, I see my dentist next wk, I will put this out there & see if he thinks I am nuts. Worth all of checkin into, the neck pain is the worst, I can hardly stand it.

    I just get so carried away, it seems like everything I read I think, yup, that is me.
    It makes sense and I do appreciate it, I don't mean to sound ungrateful, I just get frustrated with always having to spend so much time & energy on this DD.
    Feels like there is no end to what it is going to destroy next.

    Jaci