Irishred, thanks for both the info and the empathy they are very much appreciated. Actully in regards to the TOS diagnosis I think that it is correct.
Reason being, initially all of my upper extremity pain was thought to be a product of small disc bulge @ C6-in my neck. I had a total of four MRI's.
With each was a different summary diagnosis of cervical abnormalities.
The types of pain i was having however, didnt fit the bill for C6-7.
My orthopaedic surgeon wasn't buying it either.

from the moment I was first injured i noticed the medial right clavicle head
had become more prominant than its counterpart. I began to research the symptoms of a dislocated clavicle and in very short order came across TOS.
I had lots of time on my hands and did lots of research for both my back surgery and what was happening with my neck. I was pretty sure based on all I found ,that it was unfortuately most likely TOS.
The more my Dr and I Talked about it the more he agreed. Then I had to go see a workers comp Dr "whoooHoo" his job of course was to say that me and my Doc were both wrong, and I was fine and should return to work immediately. He did not do so. His opinion was that I most likely had TOS.
and advised that I see one of the the top two Dr's in the field , so i did.
ergo the current diagmosis. Not sure how to procede however Scalenectomy is not on my top ten things to do list right now But as you know daily pain is no way to live.

I am however worried about all of the chemcals am subjecting my poor system to
Just curious as to your reasons for not buying The TOS dignosis for yourself?
[
QUOTE=Irishred;468297]My heart goes out to you when reading your words!!! Much of what you have described triggers memories of what I went through seeking an answer to the chronic pain that has gradually seeped in and taken over my life. I did not have a traumatic event that preceded my symptoms as you did; in my case a diagnosis of Thoracic Outlet Syndrome was not out of the realm of possibility but it was still always seen as unlikely.

How please can they have determined that following such a traumatic event that your pain now stems from Bilateral TOS rather than from perhaps .... Chronic Myofasical Pain where the past trauma caused muscular stress and tension that resulted in severe trigger points which can cause sharp pain, numbness, weakness, migraine like headaches, and virtually everything under the sun??

Please Look into myofasical pain, trigger points and their referral patterns. Research either subject along with headaches.

I was told many things while looking for an explanation for the pain & numbness in my hands, arms and neck to include Ulnar nerve entrapment, Carpal Tunnel, TOS, etc. ... each year it just kept getting worse - what was only on the left side has now engaged both left and right.

I declined more than one recommended surgery; four years after everything started the pain moved and centered in deep in head with such severity I could not function at all. I think I now understand migraine suffers since I call these "walking migraines". Still no solution ... no definitive reason for any of it. I have disk problems in my neck, they are the likely cause of what is now being termed cervogenic headaches.

Only my work with my Myofascial Pain Therapist has provided me any relief. In the beginning I went 2-3x a week until the pain/headaches seemed to lessen - now I go once a week. I have manual and dry needling treatments for trigger points (depending on what I can tolerate that week).

My situation is quite chronic and is likely to stay so unless/until I can remove the contributing factors that perpetuate the problem (excessive stress, computer use, poor/lack of sleep, stress computer use, poor/lack of sleep ... ) see the pattern ?

Seriously though, I have cut the Ultram from 100 mg every 4-6 hrs to 100 mg every 10-12 hrs (usually )

For sleep, they've now added nortriptyline at night - the 1st night I stopped taking the Cymbalta I slept better than I had in months. After waiting a week I took the 20 mg nortriptyline and slept better than I had in YEARS!!

One small (medicinal) draw back ... I've noticed I'm becoming a bit larger??? This is not acceptable - its likely I'm going to be stuck sleepless again ... lets see, sleep or fitting into my clothes which should it be

BTW ... the lack of concentration ... forgetfulness ... chances are quite good this is due to the Cymbalta or Lyrica - research them - go to Ask A Patient see what others have to say. Ultram does not cause this, either does Motrin. My initial experiences with Lyrica were not all that great either ... too bad because it did control the pain too but, I'm rather fond of my hair!

Lastly, please be cautious ... Ultram should be restricted with many drugs, Cymbalta and Lyrica are included on this list.

Drs are only human, you need to be your own advocate - question what your are told - does everything add up - do all the events make sense - does it feel right? - if not research further until it does!

Okay, yes I'm projecting but, if you have any questions/doubts about this TOS diag. please follow though. I have not posted on this board enough to give you actual links to where I'd recommend you start but I can tell you that you may find the websites of Devlin Starlyl and Round Earth Publishing quite beneficial. And, if I could find links to my initial posts regarding TOS another board back when this started I'd bet you'd see your story there too ...

My hopes for many reduced pain days ahead!![/QUOTE]