Hi

I am looking for anyone out there who I can talk with regarding
TOS. I have been recently diagnosed with this after a long 3+ years
battle.

I am lucky I have some VERY good doctors but now it's all up to me
as to whether I choose to have the surgery or not. Right now I'm
not ready and mostly because I'm not sure what to expect after
surgery. I've heard some good and some bad. My right arm, shoulder,
neck and hand was the initial work related injury. I've been out of
word since September of 04 and since then I have developed left
sided symptoms. Migranes are getting worse where I am in bed
anywhere from 2-4 days. Seems I have a headache everyday and almost
went to the ER last weekend because I could not relieve the pain.
My primary doctor, who I saw today, suggests that I call the Neuro
(Dr Todd - who is excellent) so that he can prescribe some type of
medicine for when the pain comes on like that. I've had migranes
forever, but with the TOS symptoms it's like multiplied by 1000
times. The migranes tend to hover over my right eyebrow area but
they are getting worse and the pain is now in my jaw area, ear and
around the ear area on the right side of my head.

The specialist that I saw in Rochester, Dr. Karl Illig - also
execellent doctor and really listens to me (if you have TOS you know
that means a whole lot) he says I need surgery on both arms where
they remove the rib. Apparently, he is leaning towards wanting to
do the left side first to try and save the arm and so that I have a
better chance in having one good arm and to see if it helps relieve
my pain and then he'd go in and do the right arm. I've already had
two specialists tell me that there's a good chance that my right arm
can not be saved and if that's not depressing enough I dont know
what is. So, I'm not sure what to do here but with the research
I've done on TOS it seems that the specialists are correct in that
it took so long to diagnose this that I now have a permanency that
I'll have to live with.

If there is anyone out there with similar story can you please
contact me. My email is tdinant@... and please type in TOS as
your subject heading to me.