Thanks for replying and sorry to hear about your daughter 17 is
awfully young to have to go thru this. I too have had to give up
everything - my careeer is the big thing and have started seeing a
psychiatrist because my life as I knew it is no longer. I go
nowhere and do nothing and cant seem to see the light at the end of
the tunnel.

I believe i have TOCS where the nerves and artery are being
compressed or cut off by the rib. I have been told i may lose the
use of my arm even though i go through with the surgery. I had
carpal tunnel surgery in sept of 05 and now my pinky and ring finger
on my right hand curl in - this is because of the compression in the
right shoulder with a good chance that the artery is damaged and is
why they believe I will have loss of use.

Thanks again for replying and sorry about your daughter, hope she
keeps up PT i heard this is very good for some people (not me
though) hopefully because she's so young this may help her in the
long run.








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