Newbie With TMJ

Discussion in 'Fibromyalgia Main Forum' started by InnocentMess, Jul 13, 2003.

  1. InnocentMess

    InnocentMess New Member

    First of all, I'd like to introduce myself. My name is Alisha, I'm 17 years old, and I live in Tallahassee, Florida. I came upon these message boards by doing a search on TMJ. Now, on to why I was searching...

    Three years ago, in February of 2000, my jaw went crazy. I was in so much pain and it seemed like it was over nothing. I'd been diagnosed with TMJ before, when I was 11 years old, but it seemed as if it went away (with the help of a splint). My jaw popped out of place a lot, but I never thought anything of it. It hurt, but I just popped it back in place and went on about my business.

    That is, until 2000. I was 13 years old, in the 8th grade, and unable to attend school because I was in so much pain. My doctor prescribed me Vicodine to dull the pain as much as possible. Still, something had to be done. I didn't get to see a doctor who works with facial pain until March of 2000. She said that my problem could be fixed with this thing called arthocentesis (I know I spelled that wrong.) Using local anesthesia, she went through with the Arthocentesis. While I was still under, the doctor was able to move my mouth up and down. As she brought me out of the anesthesia, still moving my mouth up and down, I began feeling the pain. I starting shaking, crying, and hitting at her hand. She put me back under, then let me come out of the anesthesia without messing with my jaw. During sedation, the doctor was able to open my mouth to about 40 mm, but once I was unsedated, it closed back down to 28 mm.

    That happened on a Friday. The entire weekend following the arthrocentesis, I was in so much pain. The doctor who performed the surgery (although it wasn't really a surgery) did not understand why I was still in pain. She ended up telling my primary care doctor that I wanted to pop pain pills, stay out of school, and get attention. She was so far from the truth. My mom forced her into giving me an MRI.

    The results of the MRI were:
    1. Left TMJ - Intermediate to late stage (Stage IV) internal derangement with adaptive bony remodeling and moderately restricted translation.
    2. Right TMJ - Intermediate to late stage (Stage II-IV) internal derangement with marked restriction to translation and adaptive bony remodeling change.
    The right disc balls up with opening.

    With that, I was sent to Gainesville to see the (then) head of the School of Dentistry at the University of Florida. Dr. Parker Mahan examined me and diagnosed me as follows:

    1. Bilateral temporomandibular joint internal derangement with pain on the right only.
    2. Bilateral masseteric mayofascial pain dysfunction.

    Because I was 13 at the time, no one thought it would be a good idea to do any kind of surgery on my jaw. So, I was sent to the Pain and Stress Clinic at the University (which is now closed). They finally found a combination of medications that helped with the pain (as best as possible). Neurontin and Baclofen were the combination.

    Over the past three years, the only thing that's changed is the amount of medication that I take. Right now I'm on:
    -Neurontin, 1200 mg, 4 times a day
    -Baclofen, 20 mg, 3 times a day
    -Adderall, 20 mg, 2 times a day
    -Vioxx, 25 mg, once a day
    -Remeron, 30 mg, once a day

    Since March or April (I can't remember when exactly), I started seeing Dr. Woodruff, because my jaw isn't getting any better and my medications are driving me crazy. I'm so sick and tired of being tired and forgetful all of the time. He made me a splint, which I wear at night, that has helped with the muscle pain. He wants to cut back on my medications. I tried to cut back in May, and I went through terrible withdrawal. He compared my withdrawal to that of a drug addict's.

    Dr. Woodruff is trying, but I don't think he knows what to do with me. He doesn't think that my pain is coming from the joints, just the muscle pain, which my splint should help. It does help, but only at night. I think the pain is coming from both my joint and muscles. Recently, when I was unmedicated (it was early in the morning and I was waiting until 6 a.m. to take my medicine), I opened and closed my jaw consistently, just to see where the pain was coming from. I kept getting sharp pains that went up the side of my face, by my ear, and down the side of my neck. The pain was coming directly from my joint.

    Before my jaw ever went haywire, I was depressed and experienced terrible anxiety. I had panic attacks all of the time. My depression only got worse after my jaw got so messed up. I didn't seek help for the depression until about 2 months ago. I've been suicidal, depressed...all kinds of things, and my mom never knew. For three years I was like that. My antidepressant (Remeron) and therapy are helping a little.

    I'm just sick of medications. I wish my jaw wasn't so messed up because I feel like it's ruined my life.

    I think I'll stop here, because this post is probably too long as it is. =)

  2. PJB

    PJB New Member

  3. granmakitty12

    granmakitty12 New Member

    I really feel for you. I have tmj problems too. I don't know what to tell you to do exactly. I receive excellent care from a pain clinic about an hour away from my town.

    I wear a splint at night that really helps. Another thing that helps is heat and ice on the sore areas.
    For heat: I warm a moist towel in the microwave-I get it pretty hot; but not to where it would burn.
    For cold: I fill styrofoam cups with water and put them in the freezer. When frozen, just peel the styrofoam down so you can massage the sore areas with the ice. Then just keep peeling it down as you need it.

    Some people fill socks with rice and put them in the micro-
    wave or freezer. I never tried that. I think it is some-
    thing about the moisture that feels so good.

    I have to avoid unnecessary stress or my tmj and fms really flare up. I am having a really bad flare today.

    So you are among friends here and everyone is very helpful and sympathetic. Come back often.

    You look like such a sweet girl by your profile picture and I hope you get the proper help with your pain and other problems. Have you checked out the depression board here?

    Keep in touch with us. WE CARE!! Love, Granmakitty
  4. j9miller

    j9miller New Member

    I totally understand what you are dealing with. I have been suffering with severe TMJ since 1987. I was punched in the jaw and ALL my problems started, The TMJ and the FM.

    I have been through it all with the TMJ. Nothing helped. I was first sent to an oral surgeon who removed a couple of teeth. Then came the pain meds. Then filing down of teeth. Of course the mouth guard. More pain meds. Massage therapy. Physical therapy. More pain meds. Steroid shots. More dental appliances. More pain meds. Antidepressants. Braces. More meds. Remove the molars. More pain meds. Finally I was sent to Dr. Joseph McCain in Miami, FL who really understands TMJ. He did some x-rays and an MRI and found that I had Stage II-IV internal derangement left temporomandibular joint. Etiology behind the problem is based most probably on trauma.

    Dr. McCain decided to do a arthroscopically assisted repair of the left temporomadibular, disc repositioning and stabilization. When I had the surgery the Dr was shocked that my jaw was worse than the MRI findings showed. What was to take 45 min. took over 6 hours to complete. The articular disc was displaced into the anterior recess. It was immobile and roofed in the forward position. The Dr repaired to the best of his ability. Results ... 30% better. (does not last more than 6 months)

    A year and a half later I cannot take the pain anymore so I head back to Dr. McCain and he decides to do a partial joint replacement. This was done.
    Results .... 50% better (again only 6-9 months)

    I need another surgery to remove the implant. Because of osteoarthritis and the FM the pain is getting worse so Dr wants to take out the implant and see how I do. If I cannot handle it than I will need a total joint replacment. Uugh!!!! I am waiting on the surgery. I hurt to bad to go through a 6 month recovery process. Pain meds barely work now cannot imagine after surgery pain.

    I never recommend surgery for anyone but this may be your last resort ... Dr. McCain is a good surgeon. There are other good ones out there. Research it ... look around and research some more. Take care of yourself.

  5. InnocentMess

    InnocentMess New Member

    I thought my problems were bad, but I never imagined that TMJ could get so bad. It's terrible that you've went through so much. I wish you all the best with your TMJ, because I know that it's very painful and difficult to deal with.

    In 2000, around May, I began going to an acupuncturist. I went once a week for about 4 months (I had to stop because my mom and I were strapped for money). It helped me relax, but didn't really help the pain. Getting stressed out brings on more pain.

    I've tried having my face massaged, but it hurts like hell after the massage has been completed.

    When my jaw really goes to hurting, I get out an ice pack, and lay (on my right side, as that is the side that hurts the most) my face down on it.

    I get terrible migraines and headaches, usually relating to my jaw. Last Tuesday my neurologist put me on Topamax, intending for it to help my daily headaches. I began feeling really weird after taking it. I felt like I wasn't breathing and I had terrible tingling sensations all over. I know that the tingling is a common side effect, but my tingling had me feeling as if I couldn't move. I couldn't bear the tingling sensations. I took it for 5 days, but I just couldn't take the side effects. My headaches are back now (they did begin to subside after a few days on Topamax). The headaches (when they're really bad) make my entire head and face hurt. The pain in my jaw seems to increase.

    Thank you all for your kind words and shared experiences. =)
  6. j9miller

    j9miller New Member

    I am also on topamax. How much did the dr start you on? It takes a while to build up with topamax. I also had a rough start with it. I felt really weird. I had stroke like feelings. Dr cut the dose in half. That helped alot. My pain has lessened a little and hopefully as the dose increases it will help.

  7. InnocentMess

    InnocentMess New Member

    The doctor wanted me to take it like this:

    Week One: One 25 mg tablet at bedtime.
    Week Two: One 25 mg tablet in morning, one 25 mg tablet at bedtime.
    Week Three: One 25 mg tablet in morning, Two 25 mg tablets at bedtime.
    Week Four: Two 25 mg tablets in morning, two 25 mg tablets at bedtime.

    I really wish I hadn't reacted so bad to it, because it was helping my headaches a bit.
  8. nktigger99

    nktigger99 New Member


    Hello! I had to respond to this. I have had TMJ problems since I was about 9 or 10. I used to get in trouble for "eating like a horse" from my mom. My problems were pretty minor until I was about 17. One day I woke up and my whole face was swollen. I could not eat. I made an appointment with my PCP at the time. He looked at me and the first thing he said is this is medical relatied. So that was great. that meant my insurance would cover to treat it. He put a referral into to see a Maxofacial surgeon at the Universaty. I was being seen at the universary for my regualr medical care also. It took me 2 months to get into the dr. The first thing he said was I can try to help you treat your pain or I can try to elemenat it through surgery. I decided that Surgery was the best thing for me. It took 6 months fighting the insurance company to get it approved. But they finally approved it. I had the surgery March 13th, 2000. I was wired shut for 3 weeks. And wore brackets on my teeth for 6 more weeks. I only missed one week of work and school. I had it over spring break. I am so glad that I had it done. I can now chew gum for the first time in my life. I do still have a little popping but no pain. I still moniter my jaw because it can came back.

    One thing is make sure you have a GREAT surgeon. Someone that knows what they are doing. There are a few kind of surgerys and some are not as good as others.

    I wish you luck and hope that I helped a little bit.


    P.S. My headaches got a lot better after the surgery.
    [This Message was Edited on 07/18/2003]