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  • Please help; Seven years and no answers...

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    Old 07-12-2007, 10:16 PM   #1
    SJustice1621
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    Unhappy Please help; Seven years and no answers...

    Hi my names Ryan, I've been going through TMJ or some muscular disease for over 7 years, and have recieved many mixed answers.

    This is a summary of my symptoms, it's pretty lengthy, but I tried to add all the symptoms through the 7yr period. I appreciate anyone that takes the time to read this.


    Iím not sure where to start, but I've been having muscular pain for going on 7yrs now. I guess I will start from the beginning; it started back when I was 15-16yrs old. A muscle (I think the digastric) right under my jaw would always uncontrollably push down once i yawned and sometimes when I opened my mouth too wide, it was like I lost total control of my voluntary muscles in my jaw; it was a downward pressure like the muscle was trying to make space or find a place to go . I would push up on my jaw until the muscle downward pressure slowly retreated back up. This though was not when my pain began, the involuntary movement of the muscle in my jaw was more scary then painful because I lost control of my jaw and didn't know what it was going to do. The downward pressure started happening more frequent as I got older.

    One day in the summer of 00' my soph yr in college the downward pressure happened as usual, but this time the muscle didn't retreat back upward. It stayed down. After that I didn't have any more episodes of my muscle pushing downward, but a couple of months later I started having pain on both sides of my jaw. I didn't know what to do the pain was really bad and I didn't know how to explain it, so I went to my orthodontist that had did my braces when I was 13yrs old. ((I wanted to add that at 13 I had to have 4 teeth pulled 2 at the top (back) and 2 at the bottom (back) by my orthodontist b/c my teeth were crowded and had braces placed on to pull the teeth back together)) He asked if I was hit in the jaw recently, I told him no. He said that I had inflammation on both sides of my jaw and some scar tissue and my jaw was in the process of healing itself. He asked me if I clenched or grind my teeth; I told him i did not. He then told me to stay off caffeine and it will eventually get better. I did what he advised, but the pain got worst and began to progress. In the first year the pain was focused in my jaw area, forehead, back of my head (occipital), and under my jaw. The pain was so intense I couldn't get out of bed, I was in so much pain i didn't know what to do. I went to many doctor's...I was given neurotin and depression medications etc, which had no effect. Since I couldn't get any help, I decided to do some of my own research.

    I soon found out about TMJ and decided to see a specialist in my area and was told by the Dr. I had a special case because I didn't grind, but he said he could make a splint, which would help. I used the splint everyday for about 9 months, but the pain seemed to progress. Eventually the pain moved to my neck, and I started having neck pains, I was having difficulty moving it without pain. I also noticed cracking in my ear when I opened my mouth are just flexed my muscle in my jaw too. Cyst also started appearing under both sides of my ear also and I began started having pain in my sinus area as well.

    I decided to see an ENT. The Dr. took an x-rays and saw inflammation in my sinus area. He gave me some steroid nose spray and medicine for it. On the follow-up the inflammation was still there, so he decided to give me an MRI of my head and neck. The MRI came up showing inflamed areas, but no structural damage in my TMJ. I didn't know what was happening; all I knew was that the pain was progressing and affecting other muscles in my body. I also had physical changes as the inside mouth felt as if it was getting smaller...I would constantly have to pull my cheeks off my teeth because it was irritating the sides inside my mouth; it was constantly touching my teeth and pressing up against them and I would constantly pull them off. I would always bite the sides of my mouth because of this and they would eventually bleed and scar up and I would have outlines of bite marks on each side of my mouth. My teeth and bite also changed, I also noticed appearance changes as well.

    I started in about the 3rd-4th year to have back pains...It started off gradually where it felt like someone going down my back with a feather...It started effecting how I walk as it started to progress. I started to have sharp pains in my back every time I sneezed as well. Eventually I had an episode where my back locked up. I couldn't move; all I could do is lay down, if I stood if felt like my back would snap. I was taken to the emergency room and was given x-rays...they diagnosed it as back spasms and gave me muscle relaxant for it. I though continued to have back pain, but not as a severe episode where I could not move, also I was having pain in my chest as well...it was like it was spreading down effecting each muscle in my body.

    In 2005 after everything I was losing hope until I saw a neurologist and explained my story in short. He decided to give me steroid/numbing shot inside my mouth. I didn't notice it until the next day when I got out of bed feeling 60lbs lighter;...I could actually move freely without any restrictions, although my jaw still felt weird. I was feeling really good and ready to start my life from where I left off, but eventually a week later my back pain started to come back and everything else. I told my Dr. the news and I received the shot again, only this time I didnít get the same results. I didnít know if he didnít inject the same spot or put a lower dose in. I kept though continuing getting shots for about 3-4 months until I decided since I knew what helped to see a pain specialist. They told me though they could not give me a steroid shot due to that had 1 shot that should have been enough steroids for a whole yearÖI didnít know if they were telling the truth or was only concerned with the MRI I took that I didnít really care to, because I had 6 MRIís up to that point, and did not care to help me further. All I know is that they said the 1st steroid shot I took was the limit for the year they said. So now im going on my 7th year, the steroid shots aren't working and im desperately seeking some kind of help or knowledge of what this could be.

    Some of the things I do to help other than take pain medicine and Nyquil (w/ the pseudoephedrine); I would also take a small towel roll it up and put it under my chin and put pressure upward like I use to when I was having the downward pressure in the past and would push up with my hand, and I would also lay on a pillow having it push up on the back of my head...what I feel is that my jaw has shifted down; i don't really know how, but i hope that any of this information is helpful in someone to finding out what this could be.


    Sincerely,

    Ryan
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    Old 07-13-2007, 06:56 AM   #2
    Thelma-Louise
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    Re: Please help; Seven years and no answers...

    I'm really sorry you have been dealing with this for so many years. It sounds like your bite is off or imbalanced (could be from the braces when younger) and this caused musculoskeletal changes over time affecting your neck & spine. Unfortunately you are going to have to try and find a cranial/tmj specialist - not all tmj specialists are the same - some have more training and experience and have seen the more complicated cases that are not due to joint or disc dysfunction but nonetheless cause severe tmj like symptoms as well as other symtoms . The tmj specialist you choose should work closely or refer you to a good cranial chiropractor (to realign your c-spine and cranial bones) as well as a physical therapist to help start getting your muscles to relax. Its not going to be easy - as one dr told me it can take the same amount of time to correct and realign everything as it took for it to occur however another dr told me for it would take a month of treatment for every year the symtoms were present. The encouraging part is that it can be corrected. You might try dental schools or universities or medical centers in your area that have cranial and/or myofacial pain specialsits - they may be able to offer treatment or referrals to other drs and therapists experienced with this sort of problem.

    One of my earlier symptoms of this type of tmj was that my tongue started to involuntarily twist and circle the last upper molars to the point I had to stop working and from there it developed into a hemi-facial spasm on my left side ( you can browse some of my previous posts - I have had a nightmarish experience over the past 3 yrs) - I went from dr to dr for the first 2 yrs being told it was neurologicial, tmj, then autoimmune diseases, then tmj - well you know how it goes. After several tmj drs failed to treat it correctly I finally, finally found one that had seen what I had and he sent me straight to another chiro trained in cranial problems. Things have been getting slightly better but they both said it could a few yrs before I am back to or close to being "normal" again - its not just a matter of putting a splint on your teeth everything will go back to where it belongs - you kind of have to get the muscles that are torqued to relax, put the body back in alignment while trying to balance the jaw and bite at the same time.

    The steroid injections only provide limited relief - you can try a form of botox injections which supposedly last 3 months and can therefore be done 4 times a year - they should provide similar relief - a neurologist who specializes in cranial or movement disorders can do this.

    Wish I could offer more - but you are not alone - there are a few members here that are have more than just the "normal" tmj pain and dysfunction - where the whole body is affected by it - if you do some searches on the web on oromandibular and cervical dystonia, triemengial neuralgia, Ernst syndrome, thorasic outlet syndrome (not sure if that is is proper name), but eventually you should be able to see understand how your jaw relates to the neck which in turns affects your spine and the rest of your body causing central nevrous system and musculoskelatal changes and symtoms. The real trick is in finding a dr that not only understands all of this - but knows how to treat it.

     
    Old 07-13-2007, 07:44 AM   #3
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    Re: Please help; Seven years and no answers...

    Try To Get Several Opinion Befor You Do Anything Serious, It Had To Tell Who Is A Good Doctor And Who Is Not.....god Bless You

     
    Old 07-15-2007, 04:45 PM   #4
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    Re: Please help; Seven years and no answers...

    I can empathize with what you are experiencing--although my symptoms are ear pain, facial pain, jaw popping and locking but recently I have noticed that my upper back and right arm (same side as my TMJ problems) are experiencing constant spasms and pain and even some weakness. I have tried everything, gone to a variety of physicians and alternative therapists. I, too, tried the injections which lasted less than a week and botox, which didn't help at all. The two success stories I've had involved going to a massage therapist for 6 months and, while very painful, he worked on "releasing" the muscles inside my mouth and I was painfree for nearly a year! (Good for him but unfortunate for me, he decided to pursue another career and no longer does this work.....) The other was a spinal block from a provider who has since moved to another state. She used steroids and whatever else and I was amazed when I again was painfree for 4-5 months (not even an ibuprofen needed!). Since her departure, I have asked her replacement to try to replicate this procedure but he refuses, saying there is no medical reason why this should have worked. All I can say is that family, friends and co-workers noticed a huge change as my face was operating normally and I had no difficulty talking, eating or smiling. I could even yawn without my jaw spasming or locking! I am currently trying to find another specialist who will perform this procedure (which took all of a half hour) but they are few and far between........

    I do hope you find some relief as I know how horrible it can be to try to function each day when you are experiencing so much pain. Best of luck to you--and all the others who are going through this!

    Last edited by keebler14; 07-15-2007 at 04:47 PM.

     
    Old 07-15-2007, 11:22 PM   #5
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    Re: Please help; Seven years and no answers...

    Ryan your jaw is out of place, plain and simple. Corrective jaw surgery at this point is your only option and I think it would do you a world of good. Your jaw needs to be put back in place in order for it to function normally again.

     
    Old 07-17-2007, 12:24 PM   #6
    SJustice1621
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    Re: Please help; Seven years and no answers...

    Thanks Thelma-Louise, you've given me some hope that this can get better. I will be going to my neurologist to try the botox injections; I've only had a week of relief from the pain from the steroid/numbing agent shot and 3 months would be heaven. I know exactly what you mean about being bounced around though. I definitely will look into finding a cranial/tmj specialist, I never thought my pain could be caused by my cervical spin being not aligned correctly and cranial bones; do you know how this could happen?

    Also if you know any good specialist that could help and understand what is happening with my jaw and c-spine I would appreciate it. At this point im willing to travel to get some relief.
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    Old 07-17-2007, 01:03 PM   #7
    SJustice1621
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    Re: Please help; Seven years and no answers...

    Thanks keebler, you and I have more similarities than you know. I also have pain in my right arm too. I didn't know how to explain it though. It's like all muscles in my right arm knots up and I have to shake my arm and break the muscles up. It cracks and pops just like when you crack your knuckles or neck...I get breif moment of relief in my are when I pop or break the muscles up by shaking it.

    I do believe it's all centered around my jaw and if I can get my jaw relaxed it would take pressure off the rest of my muscles, I only went to a physical therapist once and he said that my muscles were really knotted up, and didn't know why. The session didn't really help because the pain got worst that night, but he only focused on the outside jaw area, neck, and shoulders. Im definitely interested in the spinal block...I think I was offered that 2-3 yrs ago, but I didn't know my c-spine had anything to do with my my pain...i mostly felt this was a muscular problem. If you have any other advice or Doctors that could help and get me on track I would greatly appreciate it

    Thank you so much for your advice; it helps more than you know. Sometimes you feel all alone dealing with this. To just know that someone else understands what your going through makes it easier to talk about. I hope you eventually find complete pain relief. I wouldn't ever wish this on my worst enemy; this has totally disrupted my life the past seven years...I wish you and everyone going through this the best as well.
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    Last edited by SJustice1621; 07-18-2007 at 03:43 PM.

     
    Old 07-17-2007, 01:25 PM   #8
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    Re: Please help; Seven years and no answers...

    Thanks for replying velvet rose, It's a very evasive procedure, but I don't see how the pain can get any worst then it has been. Im willing to gamble on this, but I want a Dr. I could trust that has had sucesses in re-aligning the jaw. I always felt since I first started having symptoms that my jaw felt out of place, and it was moving further out of place as it progressed, at times I would take a sock and wrap it around my head and tie it to keep pressure upward on my jaw. Everytime though I swallowed it felt like I was loosing the battle and my jaw was just shifting, and everything else was just following suit. I never grinded or had bruxism or anything, it was just that things were slowly progressing and changing..so much it was hard to explain, and most physicians and dentist said it was too complexed with too many symptoms to help. Im willing to do anything at this point, but I don't knw where to start, if you could give me some advice on where to look or site to give me more information on how this preocedure works I would appreciate it

    Thank you and all others for all of your responses; it really means a lot.
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    Old 07-18-2007, 08:30 AM   #9
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    Re: Please help; Seven years and no answers...

    The only advice I could give it to see someone who works with cranial bones and see if they are in place and have movement towards them. I have tight head bones that won't move (I believe is due to wearing a splint that held my jaw back). Also the neck is important I guess if you have a upper cervical chiro by you, I don't so thats out. I feel you desperation, you sound young.
    Surgery would be my last result if at all.

    Now you said you had steroid injections in your mouth. Have you checked out neural injections. I guess they can break up scar tissue, I had some just done on my head to loosen my bones, but I'm not sure if it worked.

    In my heart of hearts I know there has to be some anweres out there but its a long road. A improper splint can do more harm than good.

     
    Old 07-18-2007, 02:00 PM   #10
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    Re: Please help; Seven years and no answers...

    Quote:
    Originally Posted by SJustice1621 View Post
    Thanks Thelma-Louise, you've given me some hope that this can get better. I will be going to my neurologist to try the botox injections; I've only had a week of relief from the pain from the steroid/numbing agent shot and 3 months would be heaven. I know exactly what you mean about being bounced around though. I definitely will look into finding a cranial/tmj specialist, I never thought my pain could be caused by my cervical spin being not aligned correctly and cranial bones; do you know how this could happen?

    Also if you know any good specialist that could help and understand what is happening with my jaw and c-spine I would appreciate it. At this point im willing to travel to get some relief.
    When your jaw goes out of position, either due to a poor bite, injury, poor dental work, improperly positioned tm joints, ie. it forces muscles to work harder and eventually they begin to dysfuntion. As the jaw continues to shift it can push against the axis - the 1st vertebrae in the c-spine or neck. From there the misalignment just shifts down the spine causing compressed discs, pinched nerves, etc. and all sorts of symptoms that seem neurological in nature. The central nervous system is also affected.

    Check the Great tmj dr thread posted at the top of this forum and also check with any major medical university or dental school in your area for cranial, myofacial, orofacial, tmj specialists. Check the web site under NUCCA for a chiro trained in tmj in your area or ask for referrals to a cranial chiro or kinsieologist when seeing the tmj specialist.

    I wish you well.

     
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