Hi,
I was just diagnosed with TOS. This is the first time I heard about
it. My dr. suggested physical therapy and said surgery for this
condition is so intense, I guess it isn't an option. When I
described my symptoms to my dr, he acted like I was talking out of
the side of my neck.
Anybody got any more answers?-








- In thoracicoutletsyndrome@yahoogroups.com, "Jill" <Iwish214@...>
wrote:
>
> Hello Everyone. I just found your group. I started going through
> posts, but I am in to much pain to find my answers. So, I am sorry
if
> I am asking questions that are already answered somewhere. I have
a
> long list of medical conditions. Klippel Fiel Syndrome (thoracic
> spine is crushed and fused, Sprengels deformity (something to do
with
> ribs and other deformities on my left side, scoliosis. I was also
> diagnosed with a DVT in my left jugular vein, signoid sinus and
> another vein over 9 years ago. They have put me on long term
Lovenox
> injections which cause me a lot of joint pain. There was never any
> discussion to go in to unblock it.
>
> The past years have been horrible. I have been having severe
> throbbing in my left arm and the last 3 fingers. I get a burning
> sharp pain under my arm pit and lower inner arm. I having
numbness,
> tingling in my arm and fingers. Chest pressure. The numbness is
> slowly moving into my jaw and now up my face on the left hand
side.
> My head falls asleep on the left side. Those are just a few
symptoms
> that I can think of. I can only sleep in about 2 positions.
>
> I have been to every doctor imaginable. Vascular, neurological,
> internal medicine, Auto immune disorders, Autonomic dysfunction's
> etc..........I have had MRI's, MRA's (vascular MRI), Nerve
conduction
> test and emg? Many Doppler's looking for more blood clots because
of
> the sever throbbing and burning sensation. The only thing that
shows
> on a Doppler is that when I am lying down, the blood flow in my
lower
> jugular vein takes a lot of time to fill when compressed. But when
> sitting up, the flow is faster. Every test (other than the left
> jugular vein being blocked) has been normal.
>
> At this point, my doctor is treating me as if I am a
hypochondriac.
> My big questions is, is it possible to have TOS even if all your
> tests are normal? Do some DR's not believe in it? Or is it likely
> that my Dr.'s know about it but do not think I have it?
>
> I am so sorry for typing so much. Any help would be greatly
> appreciated.
>
> Thank you!
> Jill from Pittsburgh, PA
>