Welcome, Welcome!

topic posted Mon, August 30, 2004 - 9:19 AM by  Susan
Hello! I would like to thank everyone for joining!

Maybe we can start out by introducing our specific problems.

I have been affected with TMJ for about three years.
For the first year I didn't even know what was going on - I just knew that it hurt to move my face and I was getting really concerned that I was getting some really serious neurological disorder.
Sometime later I went to the ear doctor to address the constant clicking sound. He sent me to the dentist, who filed a few teeth (which helped immensely) and made for me a plastic mouth-guard which I barely ever wear because it's so uncomfortable.
If I'm stressed about things I will know immediately in my jaw...it helps to mediate or be in a quiet situation where I can just let my face go....

What are your experiences?
posted by:
Susan
North Carolina
  • Re: Welcome, Welcome!

    Mon, August 30, 2004 - 9:35 AM
    My jaw pops and cracks and makes a crunchy sound. It doesn't usually get to tight, but sometimes hurts quite a bit.
    Stress seems to be part of it...
    I have never been to a doctor regarding it though.
    • ml
      ml
      offline 12

      Re: Welcome, Welcome!

      Thu, September 2, 2004 - 9:20 AM
      I've always had good jaw mobility, but about 7 1/2 years ago, I was in a fight and had a 3/4 fracture about 2" long, ending in the joint.

      I recovered well, without any popping.

      Now, in the last month or so, things have gotten really bad. It hurts to chew. Sometimes it just hurts. Sometimes it pops, and my jaw visibly moves out of kilter. Sometimes I cant close my teeth together. Mostly it makes nasty popping sounds and dislocates. Great fun at parties.

      I went to my family doc, in sports medicine, who referred me to a dentist, and the dentist called in the orthodontist, who both want to refer me to the surgeon. The problem is, my insurance only covers 4 oral surgeons, period, one of whom specializes in TMJ, and coincidentally the only one who is board certified... he's also not taking new patients, nor is he seeing ANY referrals till January.
  • Re: Welcome, Welcome!

    Thu, September 2, 2004 - 11:24 AM
    I started noticing my jaw popping about a year and a half ago. Since
    then, I've been to a jaw specialist at USF and had extensive x-rays
    done of my jaw/mouth. Basically, I think mine is due to stress because
    (I'm told) I clench my teeth together when I'm sleeping. No grinding,
    just clenching.

    I've been trying to pay more attention to unconscious jaw-clenching
    and whatnot.... no more gum chewing.... no sitting with my chin supported
    by my fist..... etc. It still pops, but I *think* it's improving over time.
    • Re: Welcome, Welcome!

      Fri, September 3, 2004 - 1:53 PM
      Sometimes I feel like I have to sit alone so I can
      have that zombie-ish facial stance to allow my jaw to relax.
      Meditation helps me, I guess that is what I am saying.
  • Unsu...
     

    Re: Welcome, Welcome!

    Fri, September 3, 2004 - 4:52 PM
    Hi -

    In the most of the population, TMJ problems are due to stress or grinding at night and simply resolve on thier own or with the help of splint therapy or behavior modification. I had some popping of my TMJ back in '91 and it went away on its own.


    In July of 2000 I was in a pretty bad car wreck - was broadsided by a guy running a red light and my car spun around a couple of times and hit a lightpost. Somewho my TMJs were injuried and I bagan developing severe adhesive disease (scar tissue). It was really very painful.

    I have had three arthroscopic surgeries - each time to remove the adheasions. The discs were badly damaged and now on the right side, I have severe degenerative arthritis of one of the condyles. I have been through hell wiht this disorder and other problems resulting from the accident.

    My jaw makes funny crackling noises and hurts quite a bit in colder weather. I have had problems with migraines and pains in my ear. the pain, when it goes on fo ra long time, results in muscular pain in my neck and shoulder pretty bad and I developed fibromyalgia from being in chronic pain from TMJ and Thoracic Outlet Syndrome, which has also been operated on.

    However, I am doing a lot better lately. Last summer, when I got settlement money, I invested in a lot of alternative healing and it has helped. I am not sure how I am going to do this winter when I have to move to ohio for a bit (due to I cannot work full time and I am trying to go take a couple of classes as there is a good chance I can get a job teaching highschool english on the computer from home, so if I have a bad day, I do not have to drive to work or deal with too many folks).

    I hope to move to a warmer climate as soon as I get some career plan going again. The challenges of TMJ and TOS have certainly set me back quite a bit in life but I am thankful I am doing better now although there is a chance that some day, I may have to have both joints rebuilt if the degeneration does not stop progressing. I plan for it to stop though and I have a good mental attitude and have been okay for a while.

    Sorry to ramble on, but i have a lot of experience with TMJ and surgical methods and splint therapy and so on, so if you have questions or need a good oral surgeon recommendation, I can help, especially if anyone lives in or is close to Denver. Just keep in mind that surgery should be the last option.

    Cat
  • Re: Welcome, Welcome!

    Wed, September 8, 2004 - 5:03 PM
    my jaw has popped and felt tight since around 1989, when i was eight or nine. it didn't get bad until 1996 when i woke up a few mornings and could not open my jaw for anything! since then, my jaw is constantly tight and i have to move it to the side before i can open up all the way. i went to my dentist a while back and all i got was a mouth guard to keep me from clenching at night and it doesn't help, plus it hurts my teeth to wear it.

    the only time it doesn't bother me is when i have a bad stuffy nose so i have to leave my jaw open all the time to breathe.
    • Re: Welcome, Welcome!

      Fri, September 10, 2004 - 1:25 PM
      wow... I am working part-time for a biofeedback therapist...
      • Re: Welcome, Welcome!

        Fri, September 10, 2004 - 2:20 PM
        well shit woman. come on over!
        • Re: Welcome, Welcome!

          Tue, September 14, 2004 - 8:06 PM
          Hullo all, my jaw trouble did'nt kick in until three years ago. This was the result of having my jaw over extended during oral surgery as a child. When it first manifested, tightness set in along with the radiating pain that exteded into my neck ear and shoulder. I know I don't need to tell any of you this. But it's an agoninzing distraction. What really worked for me was going to see an accupuncturist. All it took for me was one session. It does ache from time to time. But with a little self awareness with grinding,ibuprofin and a little message it seems to be under control.
  • Re: Welcome, Welcome!

    Wed, September 15, 2004 - 12:54 AM
    I'm pretty sure my problems are stress-related.

    Sometimes I catch myself during the day clenching my jaw and try to relax it by doing some stretching exercises. That works for a few minutes at a time. Clenching seems to be responsible for sporadic temperature sensitivity--sometimes some of my teeth are very cold-sensitive but also (more alarmingly) heat-sensitive. Fortunately that goes away after a couple of weeks.

    I also grind my teeth in my sleep. At times, I have ground them so hard that the popping sound has woken me up.

    Recently, I managed to chip one of my molars in my sleep. The dentist filed down the sharp points and basically said I should wear a night guard from now on. She said that in her experience, once people start grinding their teeth at night, it's usually a permanent thing although with enough changes in lifestyle, etc. maybe you could train your body out of it again.

    I hadn't thought about using meditation to focus on relaxing my jaw. I'll have to give that a try.
    • Unsu...
       

      simple jaw relaxation exercise

      Thu, September 16, 2004 - 10:31 AM
      One thing I was taught in PT for my TMJ problems was to try to focus throughout the day on keeping teeth slightly apart with tongue resting on the roof of the mouth. This tends to give space in the TMJ joint as well as awareness of any clenching that might be going on.

      My mother recently slept wrong and probably pushed her disc out of place in her sleep somehow and has had horrible pain for the last four days. I told her to concentrate on doing this and it seemed to help. Funny how certain things come around. She was never very sympathetic when my TMj injury was causing me a world of pain and from which I lost about three years of production out of my life (along with other injuries) and now she knows what it feels like.
      • Unsu...
         

        Re: simple jaw relaxation exercise

        Wed, September 22, 2004 - 9:45 AM
        I have a lot of the same problems a lot of you guys have, but with an addition: when I clench my teeth or tighten my jaw (when I'm stressed out, usually), this somehow does something to my eustachian tube. It closes off my ear, kind of like I have "swimmer's ear". It's really strange. If I don't unpop it (lying down or putting my head upside down does the trick), then it gives me terrible headaches that extend to my neck and shoulders. I'd be delighted if anyone else out there has this same symptom, because sometimes I feel like I'm the only one!
        • Re: simple jaw relaxation exercise

          Wed, September 22, 2004 - 12:18 PM
          Hello Jen. I get the exact same thing, reguarding my ear. The reason this happens is that there is a crainial nerve that run between were your jaw hinges and your ear. When your hinge gets inflamed it came put stress on that nerve steated next to it and it will affect your ear. Gotta keep this short time for work. Ibubrofin, Seen an ENT Dr. to see if your ear need to be cleaned out. Ears with heavy wax on the affected side can worsen the condition. And I swear by accupuncture.
        • Re: simple jaw relaxation exercise

          Wed, September 22, 2004 - 12:23 PM
          I just went to the doctor for this, and it's called Eustacian Tube Dysfunction. The correct name for it has a mans name at the beginning (something like Patalous) It can be related to TMJ or not, there are other factors. Look it up!
  • Re: Welcome, Welcome!

    Wed, September 29, 2004 - 3:08 PM
    Both my mom and sis have tmj. I was just diagnosed with it 3 years ago. One dentist says it's because my lower jaw is bigger than my upper jaw, or my upper jaw is smaller than my lower jaw (Big dif, right?). I see a chiropractor once a week to help with my back problems and he noticed that I have what they call a military neck. It's when you put your head forward too much and it makes the spine straight in your neck. It's supose to be curved. So I have to consiously pull my head back (almost like giving yourself a double chin) and it helps my shoulder blades, shoulders, neck and actually my jaw. The pain is a lot less since I've been doing this. Still at times when I'm really stressed i have to massage it and take lots of advil, but that's all I've seen to help me. I also think, now that I've read it in this post, that it is also effecting my hearing. I haven't been able to hear 100% out of my left ear since 2001. It started once my wisdom teeth started coming in so maybe I have that whatacallit thing you guys were talking about. I'm going to try the tongue on the roof of the mouth thing and hope that works. Plus going to the accupuncturist for my jaw and back. Thanks for all the posts. I'm glad i'm not alone.
  • Re: Welcome, Welcome!

    Tue, November 30, 2004 - 5:41 PM
    Hello,
    I got TMJ two years ago after being intubated for a surgery. It sucks, the first year I could eat nothing but mush, baby food, apple sauce etc, it hurts a lot to talk and smile and my right joint just cracks and cracks a lot. Ive had just about everything done, injections to the muscles, injections of steriods into the TMJ joints, botox, 4 splints, and NTI device, Tens units, physical therapy.....spent over 20,000 and still no relief.
    • Unsu...
       

      Re: Welcome, Welcome!

      Wed, December 1, 2004 - 3:11 PM
      My left TMJ crackels a lot too. It is called crepitus. Mine is from an injury to the joint and the disc and resulting adheasions in there. Did they give you an explanaination as to how being intubated affected your TMJ's? I figured crepitus could be due to a more traumatic injury only.

      When things got really bad for me, I had an arthorcentisis surgery that they did under mild sedation. They basically washed out the joint with a steroidal solution. I got only mild relief from this. I then had two arthroscopic surgeries that helped a lot - for a while. But being that I have a genetic tendency to lay down a lot of scar tissue, my problems came back. though after the last surgery, not as bad. It definitly is better though than it used to be.

      Lately I have been having problems again though and I wonder if it is because of the cold. My ears are killing me and I am starting to have severe headaches again that I am sure are coming from my TMJs. Aleve seems to be helping a bit though and trying to relax and do yoga most days.

      Not that I would push for surgery, but the athroscopic was not so bad and it certainly did not make anything worse, just a bit better. It was a good diagnostic tool as well, being that the surgeon got to see just how bad my joints really were and was almost shocked at how much adhesive disease was in there.

      My heart goes out to you. I hope you can find some relief. Maybe get a second TMJ specialist involved. Good luck!
      • Re: Welcome, Welcome!

        Thu, December 2, 2004 - 12:19 AM
        Hi Cat,
        Im bumed that the arthroscopy surgeries have not left you with more permanent results, I alway thought that might be last resort for me but have heard both positive and negatives. Do you mind saying what hospital you had them at? My first arthoscopy was at UCLA, but they only did one side for whatever reason it was under sedation.

        I think the cold is a big factor, my ears are plugged again, my jaw wont move open with out me cracking it to the left and out of the socket Im tired and have headaches and no one can understand how much youre head cracking all day leaves you so drained.
        • Unsu...
           

          Re: Welcome, Welcome!

          Thu, December 2, 2004 - 7:17 PM
          I had my surgeries under the care of Dr. Steven Aaragon, in Denver - at different hospitals. He is very good. I trust him not to just go in there and do just anything for the money he could make. He is very careful and conservative as a TMJ surgeon. I hear that people fly in to see him.

          TMJ is th emost draining pain problem I have - and the most annoying, but after a while it seems to just come and go. Aleve seems to help me out a lot because it lasts a lot longer. I get anxous when I start having symptoms again because I think, uh-oh, is it time to start thinking about the bilateral total joint replacements he said I might have to have some day. But then it goes away and I calm down. I just try to take glucosamine and MSM a lot. It seems to help as well. Maybe you could try it?

          Also, there is a prescription gel that I got from a compounding pharmacy that you rub right into the joint and it works just like an anti-inflammatory without the digestive damage. Your doctor will probably know about it. It helps calm things down.
    • Re: Welcome, Welcome!

      Thu, December 2, 2004 - 7:36 PM
      Just found out that thier's a TMJ clinic in San Francisco. From little I've heard, they've had a high success rate in effective treatment. I'll post the contact info when I get it.
      You can also try condrytin and glucosomine. This helps rebuild connective tissue. Also try taking organic sulfur. This does not make the pain go away, but it does dull pain receptors. These supplyments take about one month to build up in your system before you notice the benifits.
      • ml
        ml
        offline 12

        Re: Welcome, Welcome!

        Tue, December 7, 2004 - 3:49 AM
        I've been able to deaden the problem/reduce the swelling/etc with naproxen for a while. Problem is, I'm one of the people who takes naproxen and loses sex drive. Anybody got any other meds they take? My doc says he always prescribes naproxen, and I dont want to call him to ask for something else.

        I've been doing better (knock on wood) with the swelling down, and things actually feel like the pads have floated loose again. Of course that could be just me being hopeful. I went thru the gravely stage a couple weeks ago, and then sheer bliss over thanksgving when i could eat again.

        But, I stopped taking the naproxen (for the reasons above), and am looking for a substitute.
        • Unsu...
           

          Re: Welcome, Welcome!

          Fri, December 17, 2004 - 10:40 AM
          Hi --

          There is a topical gel I was prescribed by my TMJ specialist a while ago and it does help. It goes right into the joint somehow and acts as an anti-inflammatory.

          I have the bottle right here and it is says:

          TMJ LEP GEL
          20ML

          If you wanted to find out more about it and/or have your doc write a prescription, you can call:

          ITC Compouding Pharmacy in Castle Rock, Colorado
          303-663-4224

          There is a string of numbers and letters that might identify it:

          B14275776

          I no longer live in Colorado but they will deliver it by mail. That is how I get it.

          It is worth looking into.



          • Re: Welcome, Welcome!

            Mon, January 3, 2005 - 3:13 AM
            Hi, Cat thanks for your info. What was the proceedure for the arthroscopy like and how was the recovery period, did your jaw have to be wired shut or anything? can you chew any better? I would seriously sell everything and fly to denver if I could find a surgeon I trusted.
            • Unsu...
               

              Re: Welcome, Welcome!

              Wed, January 5, 2005 - 6:54 PM
              Well, the procedure was not all that bad. I went under general anesthesia and he made just a couple of small holes near the joint and went in with a very small arthroscopic camera. It was then that he could see exactly what was going on in there and was not too happy with it. I had severe adhesive disease and the discs were damaged and the joint was degenerating. So he cleaned the adhesions off the discs with a micodebrider and put some liquid steroid medication in there and may have put the disc in a better place if it had slid out a bit. Then there were only a few stitches. You cannot tell anything happened at all.

              But no - there was no wiring shut of anything but it did hurt when I woke up and I had a lot of swelling in the area for a few days and had to have ice on it and take major pain killers for it. I felt pretty lousy as by now my immune system is shot in certain ways and for me, to undergo general, usually means about two months of not feeling well and being exhausted. Other people might fare better. They also had me go right into TMJ physical thereapy for about six weeks twice a week. I hated that but it had to be done - hated the physical therapist putting her hands in my mouth all the time and moving my jaw. I did this whole thing twice and the last surgery seemed to help though I still have problems.

              My bite though is back in order. It was quite a bit off for a while there.

              I still worry about the integrity of the TMJ on the right and the doctor telling me that there is a possiblity that I might need bilateral joint replacements some day. That really scares me. But I think the next step he said, would be to remove the damaged discs if they continued to cause problems and restriction by reforming scar tissue. So far I have been okay. It just took two surgeries to feel better.

              In my case though, I had a blow to my head and side whiplash so it was a traumatic injury and therefore more severe, though many other things can cause enormous problems for folks with TMJ pain.

              Today I have been having pain and I started to feel nervous about it and then realized I have been eating too many raw almonds. So I cannot chew anything really hard or crunchy or chewy and I am not supposed to because everytime I do that, I cause friction in the joint and more wear and tear. But yes, I can chew a lot better in general, I don't seem to need the splint anymore, but I try to eat things that are sort of soft. I became a big fan of smoothies.

              It is important to have a good oral surgeon. The one I had is Steven B. Aragon in Englewood, Colorado. I could not find much on him other than this one gal's story on how great she thought he was. She had something much worse than TMJ it sounds like, but she has good suggestions and she is inspiring:

              http://64.233.167.104/search?q=cache:hFJ98nDkcMQJ:www.smbs.buffalo.edu/wcmpi/NYS...n&ie=UTF-8


              But overall, surgery should be avoided if at all possible. Dr. A is not in a big hurry to just get in there and work without a very good reason, so that is good. Also, I had a very good dentist who specializes in TMJ - Dr. Charles Lee in Englewood as well. He was so very nice to me and did everything he could to keep me away from Dr. Aragon.

              If you are really having problems and if there is anyway you could move to the Denver area and have insurance cover it or your own money to cover good care, these two would be your best bet. Hopefully you would not need surgery.

              I found this article too and since I am starting to practice yoga as it helps my other pain issues, I might try these asanas that are good for TMJ supposedly.

              www.yogajournal.com/practice/754_1.cfm

              Good luck. Let me know if you need anything.
              • Re: Welcome, Welcome!

                Sun, January 9, 2005 - 8:24 AM
                So I just had my 3rd arthrocentsis surgery on Thursday. So far Im still groggy, doing the Therabite excercises 6 times and day and taking antibotics. I have a displaced disk (backward) on right side with a fierce click everytime I talk, open, yawn etc, it hurts a lot. So far the click is still there, but the physical therapist wants me to not click even if it means a seriously limited opening for about a week.

                My plan is to go to physical therapy and have them work on mobalizing the joint. And continue to keep the facial muscles relaxed as possible by not lauging and keeping weekly appts. with massage therapist Laura Sadler who I have recommended before. Two days before this surgery she did a lot of trigger points on my cheeks, forehead and all around the jaw that got me though those painful days leading up to surgery.

                Ill keep you posted, I may have to consider the next surgery, arthroscopy if I can't get my disk to recapture, my Im praying and working. Hope all of you had a TMJ-Pain-Free New Years!

                Good luck to us all in 2005!
                • Re: Welcome, Welcome!

                  Tue, January 11, 2005 - 1:37 AM
                  >And continue to keep the facial muscles relaxed as possible by not lauging ...

                  So you're saying that laughter *isn't* the best medicine?

                  (Sorry, had to say that. Hope your jaw gives you less pain than my jokes.)

Recent topics in "TMJ"

Topic Author Replies Last Post
TMJ treatment Nick 1 June 1, 2008
TMJ SURGERIES Unsubscribed 0 March 8, 2007
CC: TMJ, Took Over My Life & Drs Treatments Made of Me a Cripple Unsubscribed 0 March 5, 2007
TMD ???? Unsubscribed 10 January 4, 2007