Jeff, the surgeon, guru, brilliant, compassionate, person is the Neurosurgeon, Dr. Ken Casey, in Trenton, MI. I traveled from Fl for a consult and MVD the next day. This was after months of email correspondence, and pain logs, and MRI images sent to him. The length of time was due to my schedule. He was attentive via email, And his office is amazing. The easiest thing to do is email him and introduce yourself. His book, “Striking Back” is an exceptional resource!
The thing that struck me, is that he is dedicated to facial pain, and is straightforward with his recommendations, and has the track record to back him up!
I’ll be crossings fingers for you! Happy to share any info.
Regards-- Tiffanie
Hmmmm.....that's interesting. Someone on this site had said something in regard to hips, knees, etc. being out of line and it possibly effecting the jaw and the TN nerves. What if it works the other way too?
I have Osteoarthritis in my neck and back and the Dr. told me to never/never/never go to a Chiropractor, only a Physiotherapist.
When my jaw goes out of line and causes much pain only a muscle relaxer helps to calm in down to realign itself.
Not even a Physiotherapist can help at that point.
Cheryl, I am not sure but from my experience with tmj pain, this pain, or TMJ syndrome almost always causes a bad forward head posturing which then goes to the neck and shoulders causing pain and spasm. I was in PT with a therapist who also had tmj and tmj surgery like me so was really in to all the research then, that was '86. Most tmj sufferers herniate at c5-c6 from this poor posturing of the head. It can go the other way around too, the neck is postured forward and can cause spasm and pain and also tmj. Then it works it's way down if not corrected sometimes. But I honestly think anyone who is suffering from pain in their back, thoracic, and lumbar can begin to have a vicious cycle of pain from posturing incorrectly.
I have no cervical curve, have known this from the beginning of my chronic pain, neck pain and spasm, then tmj, then a herniated cervical disc. The reason all my issues went to my lumbar spine was from overuse of steroids from a reaction to silicone jaw implants, I had that mystery illness that mimics lupus. Steroids or prednisone can cause you to lose bone mass and woman begin at 35 so by the time I went through menopause my entire lumbar spine dropped from osteoporosis, I herniated at 2 levels and surgery to correct it did not work because my balsa like, not oak like bones in my spine would not hold the hardware.
Cheryl, there are trained PT's that can do intra-oral massage for tmj to help relax the muscles surrounding that tiny little joint. And I developed ATN after chiropractic adjustments to my cervical spine and neck pain too, went in for low back pain, it was the neck adjustment that always feels so good with all the popping like it is releasing spasm and it did feel better but then tmj pain began and that mysterious facial pain that no one knew anything about in the 80's. I did have a 20 year remission, now at 57 it came back 2 years ago and has progressed to atypical GN too which has ear pain similar to tmj joint pain but different. An ENT I saw told me the tmj joint is 1 mm away from cranial nerve 5 which is the one that causes TN. Take care, Sharon
Molly, you are most likely correct about this and I am happy you have responded. I am fused at 3 levels in my neck and a chiropractor would not even touch me and I did post earlier I felt that the turn, twist and snap in the early 80's did cause my ATN and then possibly the TMJ but I also had a blow to the side of my head that may have progressed my TMJ to needing surgery. The ATN did not resolve after that surgery but eventually I went into remission for almost 20 years, it has been back for 2 years now...hoping for remission again. Each one of us responds differently to everything and anything to treat this hideous disease but what a wonderful site to share information. I am very interested in PNS for my atypical TN and GN. Take care, Sharon
molly said:
I have been seeing a chiropractor since last Jan. This chiropractor deals only with the head and neck. My pain levels have dropped 80%. There are only a few of these Chiros in the U.S. Dr. BEEBEE IS IN Seattle. It is not your regular turn,twist,and snap. She uses light force adjustment. I was able to go from 2000 mg of Tegretol a day to most days 200-400' Migraines went from 16-20a month to2-3'. TN very tolerable. Would be glad to share more info. My worst days are barometric pressure changes,when a front moves in.
Jessica, I think if you read far enough along on any of these blogs you will find that this condition is nothing but unpredictable. I had the same experience with a dental procedure. I was diagnosed with Type1 on my left and after I had some dental work I all of a sudden started with Type2 symptoms on my right. My Neurologist told me that could not happen.... Needless to say I am looking for another Neurologist. I wish you luck. Just trust yourself and forget the person on the outside who does not have to live your suffering. Good luck to you.
not all chiropractors are created equal, just like any doctor. the one i go to does not take my insurance so that is a drag, and the 2 others i tried that do take it...bad news. if your tn is a compression from a vein, watch the videos of the mvd and see what is involved to move the vein off the nerve...i just doubt that an adjustment would cause it to happen or not happen in the short term...my chrio swore he he could fix it though (TN)...but i went the mvd route instead, so i dont know if it does work or not...he did fix me though, bulging disk on L5/S1 that was wiping me out...im better without surgery, so i do believe in adjustments
So true Granny how we all react differently, sure makes it harder. I'm lovin your "name choice" as I chose to be called Grammy to my Grandchildren, my daughter in law doesn't like it she says she always thinks of a little old lady, but the kids and me love it!!
Molly, I watch the weather network a lot and when ever the "ceiling" goes down I start praying!! We get a lot of changes here in Calgary Alberta Canada and it's always messing with my pain levels. Glad to hear your light touch Chiropractor is helping!
Kristin that's just crazy what your ex-Neurologist said....what a load of bleep bleep!! Obviously doesn't know much about this syndrome!! Good luck with your next one.
Knowledge is power and the more we learn in this awesome group the better equipped we are......
Granny said:
Molly, you are most likely correct about this and I am happy you have responded. I am fused at 3 levels in my neck and a chiropractor would not even touch me and I did post earlier I felt that the turn, twist and snap in the early 80's did cause my ATN and then possibly the TMJ but I also had a blow to the side of my head that may have progressed my TMJ to needing surgery. The ATN did not resolve after that surgery but eventually I went into remission for almost 20 years, it has been back for 2 years now...hoping for remission again. Each one of us responds differently to everything and anything to treat this hideous disease but what a wonderful site to share information. I am very interested in PNS for my atypical TN and GN. Take care, Sharon
molly said:
I have been seeing a chiropractor since last Jan. This chiropractor deals only with the head and neck. My pain levels have dropped 80%. There are only a few of these Chiros in the U.S. Dr. BEEBEE IS IN Seattle. It is not your regular turn,twist,and snap. She uses light force adjustment. I was able to go from 2000 mg of Tegretol a day to most days 200-400' Migraines went from 16-20a month to2-3'. TN very tolerable. Would be glad to share more info. My worst days are barometric pressure changes,when a front moves in.
Hi there waa reading your story and I too went to a chiropractor for back pain 2 years ago. He did fix my back pain but then asked me if i wanted to adjust my neck too of course i said sure because i felt so much better already well…thats when everything changed. He cracked my neck and on the way home i had this unbelievable surge of pain in my entire head i was excruciating. Well fast foward a moth later it went away for about a week then returned in my upper left teeth cheek and ear. Yup tn type 2. Well then fast foward again and i found out 6 months later i had eagles syndrom. What i think happened is the chiropractor had no clue my styloid bone was right there in my neck when he made the adjustment because its rare and bam he hit a nerve…u should check to see if u have eagles syndrom also chiropractors should not touch someones neck ur brainstem is in there what was i thinking wish u all the best.