Warning to TMJ sufferers

Discussion in 'Fibromyalgia Main Forum' started by Zzzsharn, Jul 11, 2006.

  1. Zzzsharn

    Zzzsharn New Member

    Hi Everyone,

    I've suffered with TMJ symptoms for many years, the clicking and popping and aching... I just brushed it off, mentioned to my dentist and primary MD- both suggested a night guard.

    I suppose I'm so use to pain that I didn't realize how much it was hurting, only that I noticed it more often and it was starting to give me ear pain.

    I recently acquired orthodontic coverage and decided to have it checked out.

    I waited too long. My condyles are impacted and small, my ligaments loose, there is arthritic change in the bone.. and surgery is likely. We're going to try splint therapy, but my dr said it's only temporary relief and I'll eventually have to have surgery. Probably within the next year.

    Please, if you have jaw pain - don't wait, get an x-ray. I could have prevented this if I hadn't waited so long.

    Sharon
    [This Message was Edited on 07/11/2006]
  2. angelheart

    angelheart New Member

    Hi Sharon. I had to reply to this email because just yesterday I had an appointment with an orthodonist for TMJ and a severe overbite. My TMJ is a result of living 39 years with an overbite that was never corrected. We were very poor when I was young and not able to afford braces. Over the years I have felt it is selfish or vain to get them, so I never did.

    About a month ago I was simply biting into a hamburger and excruciating pain in my jaw. I has just now started to not hurt as bad.

    After reading many articles, conferring with others and personal preference I knew I would NOT go the surgery route. I urge you to research that before you do it due to the possible ramifications of that surgery. I researched our local area and have found a reknown orthodontist who has corrected such problems with mouth appliances rather than surgery. He believes in gentle dentistry.

    Yesterday was just a consultation, but if all goes well I plan to move forward with it. Basically, I will be fitted with an upper and lower appliance (similar to a retainer, but more involved) that will be removable, but need to wear it 24/7 to get desired result. I will need to wear them for 6-8 months, traditional braces to be added towards the end of the 6-8 months to correct my spacing and gaps.

    This dr. is expensive and I don't have insurance, but my husband and I have discussed it and we are going to make it happen somehow. He has treated many adults with them and had references and all have gone years with no more problems.

    I am sorry but right now I am at a loss for the name of the appliance I will getting. There only a few drs. in our area that do and believe in this treatment so it is a newer method.

    We are all different and have to make our own choices in health care, but I wanted to share my experience with you and perhaps show you another avenue to research and compare with what you have thus far.

    I wish you all the best.
  3. gnanny

    gnanny New Member

    I had tmj for years before I knew what it was. I thought everyone felt like I did.
    I had blamed my head pain on sinus etc finally I went to an orthodontist in my 40's. My jaw discs had deteriorated badly. He put me in something called a herpst splint. I do not know the exact spelling, sorry. This was no fun but it did work. I had braces and the splint therapy, no more pain unless I have a spell of serious stress and tension can build up and give me a bad spell.
    Now my sister also had this jaw pain, her doctor insisted his kind of surgery was best. The surgery was no picnic either. Her jaw was wired shut afterwards and had to eat only liquids.

    Both treatments worked. The splint or appliance took longer than the surgery...but that surgery was quite serious. I have slept since then and cannot remember how long her recovery was..I want to say 2 or 3 months at least.

    Perhaps a second opinion before undergoing surgery?

    I am hoping you find some releif soon, best wishes, stephanie
  4. victoria

    victoria New Member

    I did something similar to Angelheart but actually much more extensive. I wore a splint 24/7 even for eating for 2 years to stabilize my jaw. I then went for a permanent solution, and re-did orthodontics for 3 more years. Expensive yes, but worth every dime as it worked!

    My bite was totally changed - my jaw was brought forward slightly and my 'bite' opened by quite a bit. It is possible to stabilize this permanently if the teeth are not allowed to meet, as the jawbone/teeth will build up to meet an opposing surface.

    My TMJ problems started after orthodontics to correct an extreme overbite when I was an adolescent, which ended up causing my right TMJ to go out of joint while talking or eating...

    And further exacerbated by the dislocation of my jaw by a dental surgeon for wisdom teeth removal. After the last I was in constant pain for 20 years bad enough to cause me to have to change jobs a couple of times; I had multiple splints over the years that only worked for about 6 months at best.

    (The worst of those 20 years were armchair psychologists -- who were really only dentists with no psych training -- "analyzing' me, grrrr, and saying it was psychological)

    Well, I didn't have much of a change in the condyles myself, but I do know my dentist was against surgery as he said the long-term improvement rate was not very good.

    Every case is different, I know. But you might want to get a second opinion from a dentist that belongs to the functional dentistry organization, as surgery is something that is pretty invasive. Their website is http://www.aafonetwork.org

    A friend of mine did this after a similar situation to yours, and found she was able to avoid surgery after all, happily, and got better. She was not as bad as me, and experienced improvement more rapidly.

    hope this helps, and I hope you get rid of the pain eventually, no matter what you do -- I sympathize!

    all the best,
    Victoria


    [This Message was Edited on 07/11/2006]
  5. Zzzsharn

    Zzzsharn New Member

    Yes, I'm doing splint therapy also-Had impressions taken yesterday and am getting the appliance on Thursday - An anterior repostioning splint. After 4-6 months of that..24/7 we'll probably do braces to correct the bite.

    My biggest problem is the that my bone is almost completly gone-- worn away.. They are literally slivers, scary to see on an xray. My right side does not translate on opening at all and the left side barely translates..

    My opening is only 28 mm-- normal is 35 to 52-- he said at 18mm- orthodonic care cannot help... I lost 3mm off my opening in 6 weeks..

    I'm praying to avoid surgery as we all know what havoc that will bring...

    And yes, a second opinion always before going "under the knife"-

    My ins only covered the cost of the x-ray.. med or ortho ins won't touch TMJ-- I'm already so financially burdened, I don't know how on earth I'll pay for any of this...which just brings more stress which brings more clenching, which brings more jaw pain..

    It's a vicious, vicious cycle.

    Thank you both for your input.

    Be well,
    Sharon
  6. Zzzsharn

    Zzzsharn New Member

    Thank you for your reply.

    My ortho agrees that surgery should be the last route. He said the oral surgeon he works with and recommends- would refuse my surgery until all other methods were exhausted.

    Mainly because results are not always positive.. then you have scar tissue and eventually have to have repeat surgery, which eventually just stop helping.

    I'm hoping to have the same result you did. That orthodic care will ease the pain enough to live with.

    But I did have to sign a waiver acknowledgeding that there is only a 40% chance of the splint therapy helping.. so I'm just a little discouraged.

    Did you have any luck having this covered by insurance?

    Take care,
    Sharon
  7. angelheart

    angelheart New Member

    Victoria, since it sounds like you had a similar situation as I do, I have a question for you. My dr. said that my speech will be greatly affected by the appliance I have to wear for 6-8 months. And I do have to wear it 24/7 (even while eating) for exactly the reason you stated. How was talking for you with the appliance? I am an Office Manager and answer the phone for the office as well as involved with quite a bit of verbal communication. This will NOT prevent me from doing it, but I want to know how much my speech may be effected so I can share with my employer. Was it something that you adapted to? Were people able to understand you on the phone? I know everyone is different, it would just be nice to hear someones experience. Any tips for me?

    I plan on being diligent on wearing it 24/7 so hopefully the duration of wearing it won't be too long.

    Thanks in advance for any thoughts.
  8. gnanny

    gnanny New Member

    Get some Ora-jel and Ora-base. The jel is a topical pain releiver the ora base is a little thicker like paste and stays put for awhile. My appliance rubbed in spots that were not used to it and it made for some really sore spots not unlike a canker sore. ouch. Those little tubes of releif can be found near the toothpaste in the stores usually. If the grocery store doesnt have it then a pharmacy will. Its over the counter, nothing to be leery of and it will be a lifesaver.

    I also had no insurance coverage, somehow we managed to make it through. Its not inexpensive for sure!
    When its all said and done you will be glad you did it.

    oh yes...those braces will make you look younger, teehee, a two for one deal.

    best wishes, stephanie
  9. Zzzsharn

    Zzzsharn New Member

    Angel you took the question right out of my mouth.. I'm getting my appliance on Thursday and was so shocked when we were talking about it at the dr office that I didn't ask any of those questions.

    I'll have to wear mine 24/7 and eat with it in.. and I also plan on following orders exactly..

    Nancy- Thank you for your kind words

    Also you splint wearers..?? What were you able to chew with the splint in?

    Thanks!

    Sharon
  10. gnanny

    gnanny New Member

    I had an appliance/splint that I wore 24/7 and if affected my speech a lot. Its something that will take some getting used to. If it is similar to mine you will be able to be understood. I had to speak slower...not a bad thing.

    Eating was a challenge. Again just had to adapt.

    It took effort, dedication and money but the releif is priceless.

    Best wishes
  11. gnanny

    gnanny New Member

    but could not bite into things like sandwich etc. I could tear into bite size pieces or use a fork.

    Will just take some getting used to. Might be best to go with softer things in the beginning. I think I ate a lot of oatmeal.

    You can do it.
  12. angelheart

    angelheart New Member

    Sharon, maybe we could kind of buddy/support each other during this process? I truly think this thread is a "sign" for me that I am doing the right thing in moving forward. I am the type of person who is nervous and scared of change, but once I get going I am fine. It helps to share it with someone going through a similar experience.

    Working full-time and having FM is so overwhelming at times and I think how can I add more struggle to what I do already. But I also know the hardest things are usually the most worthwhile.

    Whenever I go to appointments the "fog" creeps in and I leave there like "duh" why didn't I ask more questions! Now I am making a list and intend to call on my day off this week. It is like information overload!!

    Good luck on Thursday ~ please report back in and let us know how it went.
  13. victoria

    victoria New Member

    I paid out of pocket, but since it took about 5 years total, I was able to pay it as I went so it was not quite as painful as having to pay it up front. (And smart probably to do it that way anyway if you have to pay, because what if something happens to the dentist mid-treatment?)

    As Stephanie said, it takes some practice eating, and I occasionally had trouble biting things off, like a sandwich. I think it helped immensely to wear it 24/7 even for eating, btw -- I experimented after wearing it for several months and found my bite without the splint was quite abnormal actually (and immediately caused pain). I think if I had been allowed to eat with it out, I would not have gotten rid of the pain as quickly, if at all.

    I did have a noticeable 'lisp' at first, and I also had a lot of work on the telephone; but again, you eventually compensate for it. You will find you will become VERY good at specifically enunciating words, no laziness allowed LOL if you want to be understandable. I also remember having excess salivation due to the splint, making speaking even more difficult at times... and I 'spit' more when I spoke!

    When I had problems with the braces annoying my cheek tissues, I found dental wax (available at drugstores) to be very helpful as it was easy to press onto the offending part of the braces. The orajel was also helpful in case a sore developed before I realized it.

    It can be hard to also get used to looking so weird if you have to deal with the public face-to-face much; for me there was an obvious 'gap' between my teeth that the splint formed, so people do wonder what is going on and stare in spite of themselves.

    I had not heard that 40% statistic, I wonder exactly how that was come up with. I suppose it would be including all kinds of TMJ dysfunctions for all reasons...

    but I know I did run into satisfied clients of my dentist all the time... well, at least those that complied were satisfied. I was amazed at how some people decided not to wear them 24/7 even tho they'd been instructed to do so - and then had the nerve to complain.

    Can't think of anything more to add, but happy to contribute my experiences -

    all the best,
    Victoria

    am herxing and in a bit of a fog today, so had to go back and edit... hope it makes more sense now!
    [This Message was Edited on 07/11/2006]
  14. Zzzsharn

    Zzzsharn New Member

    That's a wonderful idea... I could use a shoulder to blubber on, and certainly would be willing to offer one.

    I think sharing experiences and ideas is so so helpful. It's a shame we have to suffer... but at the same time comforting in a strange way that we aren't alone.

    You know the kicker of my day? I was trying to get to work, in pain, miserable, as usual.. And don't I just get pulled over by a cop? I get a ticket for running a red, which was clearly not-He said I sailed thru a steady red. I SAW him behind me, I would have never run a red light even if I didn't see him. I will fight it, because I know in my heart I am/was not guilty... Just one more lump of stress..


    Ugh...
    I had a breakdown in the parking lot before coming in to work..

    Sharon
  15. Zzzsharn

    Zzzsharn New Member

    I was wondering about the speech and eating.. I'm anxious to get my splint- I want some relief.. pain killers aren't helping much - and I can't work with a heating pad strapped to my face..

    I have a 9 yr old daughter in braces now too. Wonder if we can get a BOGO!

    I've been on a soft food diet for the last 6 weeks.

    I'm overweight and would really like to loose some.. and I have.. I've lost 2 of my chins already!

    Just trying to see the bright side!!

    Going to check out that recommened website now..

    Sharon
  16. angelheart

    angelheart New Member

    Sorry about the ticket Sharon........I hate when a cop is behind me like that, I always think they will pull something like that on me. Luckily it hasn't happened. Good for you on contesting it!

    I will look for a post from you Friday or over the weekend on how getting your splint went. I have an appointment on 7/25 for the initial pictures, exrays, ect.

    My dentist offers a large discount if you pay up front, with contingency agreement in it that you get percent of money back if treatment must be stopped for different reasons, etc. We were considering that option, but now I am going to see if we can break it into 3 lump sums and still get a discount. Calling on Friday to ask. My list of questions is growing as I type!

    Angelheart (Kelly)
  17. Zzzsharn

    Zzzsharn New Member

    Kelly-- I know.. there was no one else around either.. it's my word against his.. I'm so sure that light was not red.. I'd bet money if I had any! I'm hoping that there was one of those dash board cameras in his car... I want proof!! lol


    Nancy, I'm on my way to check out tmj friends. I've been reading everything I could get my hands on for weeks...case studies, splint therapies--braces...I like to be well informed.


    I haven't found an x-ray quite like mine yet in all my research.

    Infact, the othro had them take the xrays over again because he said he couldn't believe what he saw.. how thin my bones have become. When we compared mine to normal ones I was stunned...speechless even. That's when every question I thought I had in my head disappeared...

    Luckily I have a flexible spending account for medical stuff at work... It just renewed in July and my balance went back up enough to cover a down payment for the splint. I think the total price was like 3500-- I have a month to come up with my first installment payment which is more than my car payment.. double ugh. I'm already on a reduced work schedule becuase of the fibro..

    Kelly, keep that list going!!! I'll let you know how my "insertion" goes on Thursday.

    Sharon

  18. Zzzsharn

    Zzzsharn New Member

    It's funny, I went to that site and realized-- I'd been there a few days ago already.. it was one of the places I'd hit on a search engine.

    You're right there was a lot of helpful info there, and now I'm perusing their message boards..

    Thanks again.

    S
  19. jake123

    jake123 New Member

    I still wear my splint. Mine is really thin so it is not a problem to talk or drink but I don't eat with it in.(Yes, it got thrown away once!) I didn't have insurance either.
    Mine cost $2400 and that included ionophoresis and prescriptions for a certain kind of compounded cream to rub on outside the TM joint area which worked great.
  20. PatchesofJade

    PatchesofJade New Member

    Thanks for telling us.

    I have TMJ.

    It doesn't really bother me anymore.

    Wearing braces probabley helped, but at times it still hurts.