| T O P I C R E V I E W |
| roxygirl577 |
Posted - 12/18/2008 : 16:46:17
Went to the dentist today for a cleaning and x-rays, and instead got sent to an oral surgeon to talk about my surgery options...crazy how that happened...
Basically, the dentist and oral surgeon said I'm the worst case of tmj they have ever seen in their practice. My mouth opens between 2-5 mm...and that's after stretching and heating my jaws. They couldn't even take x-rays and I know I have cavities, but they can't get in thier to fill them, nor less clean them. I've lived on a liquid diet and ca barely talk anymore because of this. It's so hard to imagine that all my pain in my neck and shoulders is not associated with this. Basically I have no choice, they're considering it a medical emergency because they can't fix my teeth and I can't clean the mmyself...I've lost 30 pounds this year because I can't eat right and if I ever needed a tube down my throat for emergencies, it couldn't happen. None of my insurance will cover it so I have to pay out of pocket. I'm very scared ,I hear lots of horror stories with tmj surgery, but I don't know what else to do. My case is so bad and nothing else has helped...
please, I need thoughts and prayers, thank you all. |
| 14 L A T E S T R E P L I E S (Newest First) |
| LuvtoSew |
Posted - 12/30/2008 : 06:51:59
roxygirl577
Well please keep us posted. My thoughts and prayers are also with you. Yes please make the medical ins. pay for this, as it is a medical problem not a dental problem, problem is you have a bad joint and you can't eat with it which futher deterioates your health.
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| roxygirl577 |
Posted - 12/29/2008 : 21:57:10
Logan, your reply brought tears to me...You explained me exactly. I have always tried to be the "good girl" because I grew up in a very dysfunctional family, and I followed behind my sister who took a lot of wrong turns, so I vowed to be the good one, and live a perfect life and please everyone, and I know it tore me apart inside. I'm so done being the good one...I just want to be me. I know for a fact everything I have lived with has been tms, the neck/back pain, knee pain, fibro symptoms, and my tmj. But I do know that my tmj has come to the point where I do need some physical intervention, to at least get it opened. But the pain will not go away with the surgery, that will happen over time...and it could take a bit longer but that's okay, because I know it's a journey and I'm willing to take that, and learn more about myself along the way. I also ordered Facing the Fire and I'm excited to read this, I've heard a lot of good things about it.
LuvToSew...I have not tried prolo or cortisone for my jaw...I had prolo for my neck which never worked. I will not be getting them for my jaw because my tests have shown that it's not muscular at all...in fact, my doctor said my jaw muscles are not tight at all, which is pretty rare for someone with my case, it's just that the disc is entirely displaced and not allowing the joint to move freely. But thank you for the suggestions, and i will definitely try calling my insurance company to see if they can at least help in some way.
thank you all =] |
| LuvtoSew |
Posted - 12/28/2008 : 08:39:47
I see you have a forward displaced disc right. tmj surgery should be the last resort.
I wonder have you tried prolotherapy on it, or cortisone shots.
Your disc is so tiny that removing scar tissue is hard.
Not knowing what they told you I'm of little help but I would get a second and third opinion.
You have your mri disc that you can bring to other consults. I just feel there must be a different way.
Is it just one disc or both?
If you do choose to do sx for this, I would fight with your ins. company for payment. I know medical doesn't cover splints and that, but this is a medical problem with a joint in your body.
I suffer from tmj also so I know the feeling. |
| Logan |
Posted - 12/24/2008 : 10:11:50
Hi Roxy,
I just wanted to share my experience with you. I have been pain free since 2004. I want to emphasize that it is possible to completely heal yourself using Sarno's theory and the methods of like-minded doctors and therapists. It's not easy. For most people it takes a year or so of serious psychological work - so don't despair; just because you weren't instantaneously better after reading Divided Mind doesn't mean that what you have isn't TMS.
In fact, if you were "worse" after reading D.M., that probably means that you have TMS that is an integral part of your personality. TMS evolved as a necessary coping mechanism for you and it will take some time, effort and self-care to dislodge it and replace it with better, more useful coping strategies.
Since your "TMJ" is so bad and you are so young, I would guess that you are like me in that you have always strove to be "good" and "perfect" and that there is a lot in your life, your family and the world at large which you feel is always on the verge of being out of control...
I too had "TMJ" that one orthodontist described as extreme. My bite is asymmetrical. My jaw clicks and pops. The ortho recommended I get surgery to correct my bite but I couldn't afford it at the time, so I put it off and just got a corrective mouth piece that really did nothing for me. (I never did get the surgery, still have this "uncorrected bite" and the intermittent popping now but NO PAIN).
During the four years that I suffered from TMS I had muscle tension and chronic neck and shoulder pain that would often erupt into severe, excruciating muscle spasms, which were so bad that it hurt to breathe and all I could do was cry and try not to move and hope they'd subside...
The pain grew worse every year of those four years, and it migrated until it was almost body-wide for me. In addition to the upper body stuff, I developed these weird shooting pains down my arms and "sciatica" and low back pain etc. I tried basically every modality for "back pain" that is out there: P.T., chiro, acupuncture, drugs, nerve block injections, myofascial massage, hypnotherapy...and nothing really worked. I was worried that I had "fibromyalgia" and that there was nothing to be done about it. I was consoling myself with the thought of suicide, though not actually ready to do it...
When I remembered that two years into my pain odyssey someone had mentioned Sarno. So I googled him. And with nothing to lose, checked out The Mindbody Prescription from the library. If you haven't read this, I recommend it. I liked the Divided Mind but TMP really spoke to me! I recognized myself on the pages of that book and it rang true for me in a way that T.D.M. just didn't.
After I read TMP, it took me about a year of returning to physical activity, doing some serious journaling and also going to talk-therapy (just for a couple of months, which really opened my eyes to the familial roots of my goodist and perfectionist personality) to get well; but I did it. At the end of that year, I was pain free and happier and healthier than I'd ever been before.
What really helped me too was getting the book Facing the Fire. GET THIS BOOK. Do the anger release exercises, no mater how silly or un-angry you feel when you begin them. They will help you. I'm guessing that the pain and tension in your jaw is directly related to how much anger you've been "stuffing" since you were a child.
I don't know about you, but I was a very, very good girl all my life and being a good girl takes a serious psychic and physical toll on you. The key to getting well is ditching the good girl and finding your true self. To do that, you've got to unclog the backlog of anger and frustration that you've kept yourself from expressing for years.
After doing the anger releases for just a few weeks, I went from 80% pain free to 100%. They really helped get out the tension I was carrying in my jaw and neck and shoulders. Try it. I think you'll be amazed at how fast your circulation and mobility improves.
Good luck! Be well. |
| roxygirl577 |
Posted - 12/22/2008 : 22:24:05
thank you all so much for your kind words and advice, I value this board and everyone on it so much..i believe the Lord brought me here for a reason.
I saw an oral surgeon at OHSU in Portland and it was a good experience. I got an MRI done and they could see that my problem was due to my disc entirely. He even said my muscles were not tight at all and was surprised at that, but my disc is causing the lodge and again my mouth wil only open 5mm even with heating, massage and stretching. They're not able to give me a mouth guard because it won't fit, and they highly suggest I get a procedure done to remove scat tissue and adhesions and hopefully push the disc further so i can get my mouth open. The doctor was very nice and very honest, he even told me to not expect this procedure to do anything about my pain because he admitted that most people who treat their tmj usually do not experience a decrease in pain, especially with surgery. I told him that I was not worried about my pain, only getting my mouth open again, i even told him a bit about the tms concept and dr. sarno and he completely agreed with it! He believes that most pain disorders are mostly psychological, which was great!
I know that once I can get past this I can focus on my tms treatment. I'm very excited to get this done and be able to eat real food again =] ....cream of wheat has saved my life =]
Once again, thank you everyone. i'll let you know how the procedure goes.
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| rubymineroad |
Posted - 12/20/2008 : 09:36:45
Roxy, My wife suffered from a bad case of TMJ, with a locked jaw. and fibromyalgia. She couldn't open her mouth very wide. After visiting several local TMJ doctors with little results, I tried to find the best TMJ doctor in he country. And found Dr. Ronald Auvenshine, Houston, Texas. Immediately, she could open her mouth wider. Less than 1% of his patients result to surgery. IMO, TMJ surgery should be your absolute last thing to do. During her problem, I came upon Dr. John Sarno, through Dr. Andrew Weil's letter. I read Dr. Sarno's books and immediately my recent tendonitis and back pain went away. My tendonitis pain was pretty bad. I went to two well known hand doctors in Dallas and started wearing a night splint on my arm. My wife still has bad neck and shoulder pains. Dr. Scott Brady, describes my wife well in his book, Pain Free for Life. She has a lot of repressed anger. Currently, she doesn't want to admit that her pain is TMS. I journal, walk and do some yoga each day. And believe journaling is the most important key. Thank you all for your help and filling in the blanks! David |
| RageSootheRatio |
Posted - 12/20/2008 : 08:57:59
roxygirl, I just wanted to send my best thoughts and prayers to you. You have been through SO much already and as others have pointed out, at such a young age! I wish you much strength and empowerment through these big challenges in your life. |
| pandamonium |
Posted - 12/20/2008 : 07:59:46
Good luck Roxy, my thoughts and prayers are with you.
I hope you get it sorted out. |
| Dor |
Posted - 12/20/2008 : 04:55:08
Interested to know how you are holding your mouth and teeth during the day. Tongue should rest lightly behind the back of the top teeth and the teeth should always be seperated. It is very possible to carry a great deal of tension in our jaw and facial area even when we are not aware of it. So, it is important to relax all of that many times a day. Simply being aware of it, letting your face go limp, and saying "let go" can help immensely. Know it sounds simplistic, but it really does help.
How much is your mouth guard helping? I found that I woke up biting down hard on it rather than it preventing me from clenching.
Also, have you considered things such as acupuncture or massage (done by a trained therapist)? Acupuncture can help this problem. It doesn't hurt and can often relieve some of the pain and relax the muscles. I would want to try a few alternatives before agreeing to the surgery. How about a relaxation yoga class or tape? Helped me a great deal.
While I do believe that a great deal of TMJ is caused by stress (TMS), I also believe that there is a physical component to it for many. One does not need to throw the baby out with the bath water!
As to eating. I went eight months without back teeth, thus no chewing, and thus losing 20 pounds. But, nutrition is vital to your healing whether it be physical or emotional. So, do some creative thinking. What soups do you like that you can eat the broth from? Can you eat spaghetti without the noodles? How about a good ice cream (even melted)? Yogurt is especially good for your body. What can you take in through a straw? Smoothie? Get yourself a Magic Bullet (look online or in some stores) and grind everything up. Food tastes the same even when ground up! Drink V-8 fusion. It has fruits and vegetables in and tastes yummy - several flavors. Take a multi vitamin. Don't mean to sound patronizing, so sorry if I do. I just know and understand what it feels like to not be able to eat. Eating is a huge part of our lives - physically and socially so making yourself feel better about it helps emotionally.
Lastly, sometimes we try to hard to fix ourselves which makes the tension worse. It is through the letting go, relaxing with our problem, not pushing so hard for an answer or a cure that often the best healing is done. Is Sarno not saying that - let go? But in that letting go we have to be gentle with ourselves and give ourselves healing help. Sometimes what works for one does not work for another. It is often trial and error, but always believe that you are working towards your own good. Go gently and the answer will come.
Dor |
| salamander |
Posted - 12/20/2008 : 00:56:37
Roxy,
I'm a huge believer in TMS, having suffered with it on and off throughout my life. I've found it to affect so many different parts of the body, in a variety of ways. There is a good chance that you have TMS that is showing up as TMJ. However, there is also a possibility that it is an actual physical problem. Your condition sounds very serious to me, if only because it is affecting your eating. This warrants a visit, at the very least, to a TMS physician (in my opinion). This forum can offer wonderful advice, but very few here are qualified to really help you.
I don't want to add further stress to your life, but you are too young to suffer with this type of problem. I can't even imagine, how this has impacted your life in so many ways. As you pursue possible solutions to your delemma, I would search out the very best oral surgeons, as well as the best TMS doctors, therapists, etc...Your health is at stake.
Best of luck in your quest, may you get over this soon.
Doug |
| roxygirl577 |
Posted - 12/19/2008 : 13:13:27
thank you so much =]
I might be deciding against it, because I have never felt this fearful about anything, not even my pain, so I'm going with my gut and not having it. I'm hoping that my body will soon adapt and maybe I'll be able to open a bit, at least so I can breathe better, eat, and get my cavities filled. I want to focus on tms and get away from all the physical...it's driving me crazy. Back to journaling... |
| HilaryN |
Posted - 12/19/2008 : 08:44:34
Here are my best wishes for whatever you need to do.
Hilary N |
| roxygirl577 |
Posted - 12/18/2008 : 22:13:31
thank you so much =]
yeah, i've been going through treatments on and off for 2 years and nothing has helped...
The good thing is I don't have pain in my jaw joint...which is strange and leads me to believe tms is a big culprit...I only have severe pain in my neck and shoulders. But the only reason why i'm getting the surgery is because I can't open my mouth and I've developed major breathing problems, I wake up during the night not being able to breathe, and my jaw is locked shut to where i cant get air through it. And I also can't eat anything. I think you're right though, if I have the surgery i will probably still have pain, because i believe my pin is tms, but it's hard for me to believe that my locked jaw is tms, so once this is done and over with I can focus on my tms treatment. =] |
| stanfr |
Posted - 12/18/2008 : 21:08:57
Roxygirl; You are in a tough position for sure, and i hope you can pull yourself through. I had surgery a couple years back for something i knew fundamentally was TMS (sinus congestion) but because CT scans clearly showed a deviated septum, i couldnt get past the doubt and i couldnt beat the symptoms. It was only after i had the surgery, when symptoms still returned, that i fully became convinced that it was definitely psychosomatic. Surgery should always be a last resort, but sometimes it becomes the only recourse. I dont think anyone knows how "TMS/AOS" and structural "abnormalities" are related. For example, no one has ever convinced me that disc herniations are simply "targets" for the subconcious to latch onto, could be so but i think there's more to it than that. Interestingly, my right jaw has TMJ--pops and clicks every time i open my mouth--but has never caused me any pain! Who knows why? I suspect there has to be more than just unfortunate genetics involved. If you havent gone for extensive therapy, i'd defintiely give it a shot before surgery. At the very least, you need to do something to clear you head--to distract the distractions. If you have vacation time--now's the time to take it! Do something radically different to shake up your psyche, then see how youor body responds. I wish you the best of luck-S |
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