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  • TMJ Sufferer for 5 Years - New To The Board & Need Advice

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    Old 05-20-2004, 08:36 AM   #1
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    TMJ Sufferer for 5 Years - New To The Board & Need Advice

    Hi Everyone,

    My TMJ problems started my junior year of high school when I had my wisdom teeth removed. About a month after that procedure, I started getting incredible pain in my right joint and moderate pain in my left. The oral surgeon I went to was crazy (I discovered this AFTER, unfortunately) and after I asked why I was in such pain, he put me on flexeril and ibuprofin (800 mg). After those didn't work, he sent me in to get an MRI of the joints. Both the right and left discs were displaced. The right moreso than the left. He soon after decided to inform me I should have a disc arthotomy (take both of them out). I went screaming and running out of that office. I couldn't fathem a person saying to have such an extensive surgery (and IRREVERSIBLE!) done without further help.

    After that, my pain increased. I found a so-called dental TMJ specialist and he put me through hell too. I had a bite splint (repositioning splint) made and I wore it 24/7 for 7 months. I started feeling some relief, but as soon as I was done with the treatment I noticed my bite had opened up. I now had a somewhat severe open bite and my jaw misaligned moreso than I ever noticed before this treatment.

    At this point, I was hitting a wall. I'm a trumpet player and couldn't stand to play for more than 2-3 minutes because the pain was so concentrated and severe, especially with the pressure of the moutpiece, etc. I was honestly going to go into music performance in college, but couldn't take the pain so I opted not to.

    I went off to my freshman year at college, and went to another specialist that I was recommended to. He suggested I get braces put on to align my teeth and prepare for orthognathic surgery. I did a lot of research and the doctors really said "oh yes, this will be the cure." I guess looking back on it I was more nieve than I really hope to ever be.. Anyways, I had a years worth of braces before the surgery, had it last year in June, and the process was one I never wish on ANYONE.

    As soon as I had my braces on, my TMJ just got worse and worse. My bite opened up even more (my ortho said this was normal, but I was skeptical), and now I was having even worse headaches, etc. It started to really scare me when I was having dizzy spells and would just collapse because I couldn't catch myself after an episode happened. The pain also went moreso into my neck and all the way to my lower back now. It's often so unbearable that I can't sleep more than an hour without taking pills. I'm one of those people that wants solutions, not to just pop pills - so this is pretty frustrating to me.

    So, here I am... a year after surgery, frustrated and angry that I went through the crappiest surgery known to man, had a recovery from hell (let's just say that this post is already long enough and I don't want to go down that road again), and I just need help. I can't open half as wide as I could before surgery, and now the left disc is displaced more than before. The last thing that I'm really mad about is the fact I can't feel my bottom lip or halfway down my jaw to my chin area. It's still numb from the surgery and my surgeon seems to think that I'll be stuck with this.

    Anyways, I'm going to another so-called specialist on the 25th of this month, so we'll see how that goes.

    Any advice???

    Thanks & Take Care,

    Last edited by MSUGuy02; 05-20-2004 at 08:42 AM.

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    Old 05-20-2004, 09:10 AM   #2
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    Re: TMJ Sufferer for 5 Years - New To The Board & Need Advice

    andy - im really sorry to hear about your experiences.. it makes me so sad that you're in so much pain.

    i havent had surgery, but ive been thru a plethora of treatments over the past 10 years, which have not worked. im young, too [23], so i can identify with you.

    anyway, it sounds like you're pretty cautious, so that's good. when you see the next specialist, make sure that he does a lot of diagnostic testing [xrays, muscle palpation, EMG, etc] to see what's truly going on. since you have an MRI, i'd try to bring a copy to that appointment.

    i wish that i could offer you advice, but im on my own journey of not knowing what to do. :|

    take care,

    - saaraah.

    Old 05-20-2004, 06:51 PM   #3
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    Re: TMJ Sufferer for 5 Years - New To The Board & Need Advice

    Hi Andy:
    I'm so sorry to hear that you are in such awful pain. It makes me angry that so many "specialists" suggest surgery for so many TMJ patients. They have to know how sensitive the TMJs are yet they are so quick to suggest surgery. My personal opinion is the reason they suggest surgery is for the $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$. It seems they have no regard for how it will leave us. My only suggestion since I refuse to allow ANY surgery to be done one me even though it's been suggested numerous times is to try splint therapy again. If you get the proper splint it can help with these symptoms. The splint I am now is my 4th splint and it has worked well for me. I am now moving into phase ll. So, there is still hope out there so don't give up hope. It's unfortunate that finding the proper treatment for TMJ is so difficult. With no real guidelines for treatment we are left at the mercy of the "professionals".

    Old 05-20-2004, 07:09 PM   #4
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    Re: TMJ Sufferer for 5 Years - New To The Board & Need Advice

    Hi everyone. I too have suffered from TMJD for about 5 years. However, mine was bad enough that my first and only line of treatment (outside of Valium and Vicodin at the same no less ) was surgical. I know I had read many horror stories about these surgeries, but mine was a godsend. I was eating through a straw for 8 months because I could only my mouth as far as to get a straw in it. I don't really know about the displaced discs because mine were completely gone. What if any was less was removed and it greatly improved my opening. Andy I hope someone can find a solution to help you and I know my situation is different from most TMJ suffererers, but I also had severe headaches, neck aches, ear aches, tooth aches (any other aches I'm leaving out LOL) and was dizzy from it as well. Please go to try to find a reputable Oral/Maxillofacial surgeon and get one or two more opinions. Good luck!!!!

    Old 05-22-2004, 10:23 AM   #5
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    Re: TMJ Sufferer for 5 Years - New To The Board & Need Advice

    Hi Andy,

    I am sorry to hear about what you have been through. I just wanted to let you know that there is a woman who sometimes posts to this board. She has been through a few surgeries and a long road but she has a pretty much pain free life now ! Her posts may provide some hope for you. Her username is cymysue I think. If you do a search you should be able to find her posts. There is also another board that she goes to but I am probably not allowed to mention it here as I might get banned. She might have some decent advice to give you too??


    Old 05-22-2004, 11:15 AM   #6
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    Re: TMJ Sufferer for 5 Years - New To The Board & Need Advice

    Have you tried cranio-sacral therapy? I have had some luck with it. Though I have not had TMJ surgery, I have been in moderate to severe pain for 3.5 years, with headaches, neck aches, muscles spasms in the face, dislocated jaw, etc. The C-S therapist that helped me the most was a doctor of osteopathy (DO). I saw two other C-S therapists that were not doctors and they didn't help me at all. This DO works with my facial bones to alieviate pressure in the jaw joint (my facial bones tend to move from all the muscle spasms around my jaw joint). Also acupuncture has helped with the pain temporarily. Don't give up. Keep trying different approaches with different doctors/therapists. Make sure whoever you are seeing is practicing "non-permanent" therapy and that they have worked with MANY TMJ patients in the past. And if it isn't helping after the 2nd or 3rd visit, try something else! Good luck to you.

    Old 05-24-2004, 12:53 PM   #7
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    Re: TMJ Sufferer for 5 Years - New To The Board & Need Advice


    I am confused. Why would your Dr. want to remove the displaced disk, and not just put them back where they belong? My disk came out of place (all of a sudden one day) and my mouth locked closed (from clenching at night over 10 years). My Dr. did surgery and I felt better immediatly!! I would suggest getting Dr. recommendations from every Dr. you know for a TMJ specialist (Dentist, orthodonist, Medical, etc.). Make sure the Oral Surgen that you choose has performed lot's of TMJ related surgeries. That is the ONLY way you will feel better is to get those things put back into place. Good luck, I completly understand what kind of pain you are in. TMJ will ruin you life. It is so stressful.

    Old 05-25-2004, 08:36 AM   #8
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    Re: TMJ Sufferer for 5 Years - New To The Board & Need Advice

    Hi Everyone!

    I just wanted to say a quick thank you for all your support and advice. It helps to know that I'm not alone in this quest to find some sort of relief. I made an appt with this (hopefully) good TMJ specialist. He also deals with migraines, and many other symptoms of TMJ, not just "the jaw" which makes it seem a little more promising than other specialists I've went to. Let's hope! The appt is June 1st, so I'll update later on.


    PS. How hard was it for you to request another MRI? I need a new one as my other is 2 years old, but... none of my physicians will request one. It's frustrating.

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