My New "Nightmare" Jaw and Breathing Problems

Discussion in 'Fibromyalgia Main Forum' started by dhcpolwnk, Jul 8, 2003.

  1. dhcpolwnk

    dhcpolwnk New Member

    I went to the dentist today expecting him to start working on a bridge to replace a molar I had extracted in January, but the visit turned into something very different.

    When the technician tried to get an impression they could use to create the bridge, I wasn't able to bring my teeth close enough to get a useable impression! This was my first time with Dr. G, but he works for/with my friend, Dr. K, the TMJ expert. Dr. G checked both sides of my mouth and the way my teeth were coming together--or, more accurately, *not* coming together. It seems that only my molars were touching, and since I have only two molars on the right side, that means I can only chew using the molars on the left side. I'd noticed recently that my bite felt strange when I tried to chew, but I hadn't made a big deal out of it since I'd had a similar problem to a lesser extent before, but it seemed to improve after Dr. K ground down one of my molars a little and after I had PT on my jaw.

    Dr. G wanted my friend Dr. K to take a look before proceeding with the bridge. (He'd already given me the anasthetic; in fact my jaw's still numb as I write this.) Anyway, Dr. K had a technician make some special X-rays of my head and jaw, and we went over the results as soon as the films were developed.

    Apparently, the ends of the bones in my jaw joints (one on each side) that are supposed to slide forward when you open your mouth have become flat when they're supposed to be rounded. Dr. K says the jaw joint isn't moving forward as far as it should to allow my teeth to come together. In addition, it seems that the distance between my jaw joint and my cheekbone is different on one side from what it is on the other. This apparently causes my jaw to shift over. The way he described it, it sounded as though my jaw is actually twisting!

    Dr. K suspects that a bacterial or viral infection in the jaw joint caused the flattening of the bones in my jaw. I have an appointment with him for "Omura testing," a noninvasive, alternative way to check for infections. (I've had this done before, and it seemed to work very well.)

    Unfortunately, it sounded as if I was in for a *lot* of dental work before they can even consider putting in the bridge. Meanwhile, it's very hard for me to chew--food that is; I seem to be very good at chewing the inside of my cheeks! :^(

    I was anxious about having the bridge work done, and now it seems I'm in for a lot more heavy-duty work on my molars--just what I need. Physical therapy helped me to get my jaw unlocked after my oral surgery, and I got to the point where I could open my mouth prettty well for a while, but I think it may have closed up again somewhat. And I tend to get bad headaches from keeping my mouth open for extended periods. (Dr. K described my jaw situation as "a nightmare.")

    And just to make things interesting, the x-ray showed that my airway is very narrow (5mm at its widest, Dr. K said). He suspected sleep apnea, but when I was tested for that last year, I didn't have a single apnea and only one hypopnea. None of the doctors I talked to about my breathing problems really thought apnea was very likely for me. But now I think I may ask to be tested again. At least the narrow airway is objective evidence that may help explain my breathing problems, where all of the other tests I took kept coming back as normal.

    Sorry this message is so long, but I wanted to write things down before I forgot them. I don't really expect anybody else to have this weird combination of things, but with FM, you never know. Maybe just some of this sounds familiar to someone. If so, I would appreciate any insight or ideas you might being willling to share.

    --Laura R.M.

    P.S. Are there any particular viral or bacterial things I should ask Dr. K to test for? I don't know whether he can check for mycplasma using the Omura system, but I was thinking about suggesting it if it seems possible that it could be in the jaw joint.
  2. Dee33K

    Dee33K New Member

    Laura, I work for a TMJ Specialist who lectures all over the world. Where are you located? Some of what you have written sounds rather strange to me. What causes him to think you have had infection in your jaw? What is "omura testing?" How is this done? Did he mention the displacement of the condyles? Does he know that physical therapy techniques and a splint worn at night can train the condyles back into the proper placement? I will be happy to help you in any way possible. As far as sleep apnea goes that only way to determine that is with a sleep study, not by an x-ray.
  3. dhcpolwnk

    dhcpolwnk New Member

    Thank you for jogging my memory! It is the condyles that have flattened ends where they are supposed to glide. My memory stinks lately, and I haven't been sleeping well to boot. (What a surprise for somebody with MS and fibro!) Sorry I wasn't specific in my original message.

    My friend is a leading TMJ specialist and has TMJ dysfunction himself. His name is Bryan Keropian, and his practice is in Tarzana, California. He just mentioned the infection as something he suspects, not as a diagnosis. Omura is, I believe, both an MD and an alternative medicine specialist who combines elements of Eastern and Western medicine. He is Japanese, but apparently does work all over the world. Bryan has studied directly with him several times, and though he believes in the Omura techniques, he doesn't go *only* by that, nor does he insist that patients who are uncomfortable with it rely on it. In fact, I was very skeptical and still remain a little bit that way. But the Omura testing is so non-invasive that it can't really hurt as long as you don't completely ignore other possibilities.

    The Omura test I think Bryan plans to use on me (which he's used before) is the bidigital O-Ring test. It sounds bizarre, but it seemed to work with me once before when I was having persistent dental pain. The test suggested the problem was an infection. Bryan was going to prescribe penicillin. I mentioned that I had taken penicillin once before and had a horrible time with a flareup of my acid reflux--and the problem it was meant to fix didn't seem to improve.

    So Bryan tested me with both straight penicillin and with amoxycillin. The test showed the the first was ineffective for me but that the latter would work. Sure enough, I took the amoxycillin, which caused me no heartburn problems and resolved the pain problem (which had been going on for months and appeared to indicate an immediate need for a root canal job).

    Unfortunately, it turned out later that the tooth was cracked, and apparently, further infection occurred. That's what led to my having the tooth extracted. (The endodontist discovered the crack when she did the first procedure for a root canal job. That was after a second round of antibiotics ordered after a new Omura test showed a recurrence of infection -- months after the first time -- failed to fix the problem.)

    If you want more information on Omura testing, do a Google search for "The Formation and Basis of the Bi-Digital O-Ring Test" (without the quotation marks). There are articles about this on the Internet that are critical of this test or ridicule it, but I trust Bryan Keropian. (We've known each other since high school.) Bryan also is a recognized TMJ expert. You can find out more about him by doing a Google search for the "Center for Craniofacial Pain" and/or for "Bryan Keropian"--again, without the quotation marks.

    I'm not quite sure why Bryan suspects an infection may be responsible, but he he asked me whether I've had trouble bringing my teeth together for a long time, and I told him that I had the problem a bit after my oral surger, but it had gotten better, then suddenly seemed to have gotten worse (with no head trauma). Bryan compared the opening between my top and bottom teeth to the way it had been when I last saw him, in March 2003. He said there was a *very* big change. I think he wants to try a non-invasive way of checking this before looking for other explanations, including tight muscles pulling my jaw out of alignment.

    Regarding sleep apnea, I know all about sleep studies. I've had one. My son has had one. And my husband has had *four*! Bryan Keropian didn't insist that I had sleep apnea. He just suspected it because of the narrow airway, which showed up on the x-ray and which I know is typical in sleep apnea.

    As I said, I *did* have a sleep apnea study, which indicated I *didn't* have it. However, that was last year--before my oral surgery, which seemed to result in a lot of jaw problems. *I'm* the one who is thinking about a new apnea test. Bryan said that if the sleep apnea test indicated I didn't have it, then that's that. (I hadn't remembered when I saw him that I'd taken the sleep test so long ago.) Bryan was just saying that the narrow airway would lead him to suspect apnea.

    But what interested me about the narrow airway wasn't sleep apnea so much as the *daytime* breathing problems I seem to have periodically. I had requested a sleep apnea test originally because I thought if it was happening at night, it might also explain what was going on during the day.

    By the way, Bryan also is working on treating sleep apnea. He does this by building up an NTI device (usually worn for TMJ dysfunction) to help keep the airway open at night. This would be an alternative to the standard CPAP machine treatment. My husband has tried a CPAP machine (we haven't bought one yet), and he isn't sure he could use it regularly. On the other hand, he has been using the special NTI device for six months or so, and for most of that time, he has stopped snoring and gasping for breath, and he has started dreaming and getting better sleep.

    Thanks for your offer to help. I may take you up on the it in the future. Who is the TMJ specialist you work for? I wonder if he (she?) and Bryan know each other. Bryan is also a board member for the TMJ Society, in case your boss is affiliated with that group, and I work on health-care policy issues with the founder of the TMJ Society, a woman named Liz Helms.

    Thanks again.

    --Laura R.M.