RobynRose

Hi Everyone. I'm new here and have been reading all of your informative posts with interest. I'm having an awful time and thought I'd send out an SOS in case anyone can offer me insight, or relate to my case. Trying to quickly summarize, I have had spine problems for the past 9 years. I'm 39 now... but have been through the mill with what is deemed an "unstable" - spine with a disc herniation and slip of L5 over S1 of 6 mm.

In any case, 1.5 years ago, I underwent a myelogram in preparation for a spinal fusion surgery.
This resulted in a headache from hell - that left me dizzy and in excruciating pain. It was assumed I had a spinal leak - but I failed to respond to normal treatment for this (bloodpatch)... and was left to figure it out for myself. I also had jaw and neck issues through the year - but the headache was dominant and severe. I've been taking Neurontin for over a year... never had the spine fusion - and have expienced horrible facial neuralgias - pressure and upperbody pain like I've never known (all in addition to my spine pain).

To make a long story short... this past September I woke one day with a horribly painful jaw. I should mention that my jaw always made clunking noise - but never casued me pain. Prior to the myelo, I had a headache once a month -but nothing an advil and sleep wouldn't conquer. This year is a whole other story.


Anyway, getting back to this past fall, following the jaw pain, I had pretty severe pain in my neck (opposite side - Left). Next came the most horriying pain in my scapular region. I ran to pt...and they jumped on a shoulder that pops and cracks...but this has been this way for years without pain. Next we noticed that I had a "buldge" above my right collarbone, and I was sent to an ent. He thought the buldge was a swollen lymph node...and given that I have a history of breast cancer (yes had this at 37) - was immediately sent for MRI of the node. The node was fine, and drs concluded this may be muscle inflammation.

At this point, I still have pretty horrific neck pain, and the jaw won't quit. It feels as though it is going way off "track" whenever I attempt to open my mouth. There is never a time I can open without "firecrackers" going off. If you look at me...it's reallly bizzare becaue the left tmj deviates way over to the left - while the right is totally "frozen" still. The same visual applies to my neck. If I make an "eeeee" sound - you can see the right neck move with the sound...as the left is solid still!!!

Does this mean anything to any of you experienced TMJ people. I have 24/7 pain in the jaw and feel the darn thing move out of alignment constantly. I've resorted to "holding" it with my hands -trying to keep it where it belongs.??!

Now - one other important thing - I seem to have a similar syndrome in my lumbar spine. My pain is all about instability in the joint. I feel the lumbar lock - and can sometimes "adjusst" myself to get free of the "lock" - getting amazing relief. This has become much harder to do - as the muscles go into tremendous spasm. I've been classified as having very loose ligaments in most joints, and 2 doctors have suspected that I have "hyepmobiltiiy syndrome" - or
Ehlers Danlos class 3 - benign type. I live in a state of chronic pain from my spine issues... and now this. I've resisited long-acting narcotic meds, as I have 2 young children and also feel I need to somehow address the structural issues...but how. For my spine I have tried so many treatments..inculding proloterapy, radiofrequency ablation, joint blocks, etc. Nothing has proved even remotely helpful other than srenghtening my muscles around the loose ligmaments to the best of my ability.

Where do I begin with the TMJ issues/?? I actually have experimented with the NTI device (made up by my brother-in-law as a favor as I had read about it and he's a dentist). Other than this, I have tried massage - stretching - heat - ice etc. I also take a Flexeril each night --and am on the Neurontin at 1200 mg a day.

I suspect that the myelogram caused some type of truama that set the vulnerable TMJ into action. I am worried because it's been 7 months now - and I'm only getting worse. A recent physical therapist proposed that the myelo irritated my trigreminal nerve... which in turn caused a migraine reaction...leading to the tmj and neck issues. He suggested I try Botox injections into my skull/neck muscles??!! Do any have insight here??

Do I address the neck (triggerpoints) with my physiatrist...or the mouth/jaw with a tmj dentist??

Anyone know how I can locate an expert in the New York area???

Thanks so much for all your insight and support. Chronic pain caused by invisibile ailments are so very difficult to cope with. You all have a ton of courage which I admire and respect!!

Best to all, Robyn
Robynf