I'm sorry you are suffering so badly. My 17 year old daughter was
recently diagnosed with TOS after two incidents of blood clots in the
vein. She is now on physical therapy and lovenox blood thinners as
conservative therapy. She has given up everything she loves. Dance,
Drums and has a lot of weakness. What type of TOS do you have. There
are 4 or 5 kinds. My daughert has Paget-Schlutter (sp) syndrome. When
you say loose the arm, are you talking about the use of the arm, or
do you have artery damage?

--- In thoracicoutletsyndrome@yahoogroups.com, "tdinant"
<tdinant@...> wrote:
>
> 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.
>