[joanne1971]

scared scared scared... part of me wishes i never had this operation, i was sent home the day after surgery no xray done no pain killers given the pain felt as if i was being stabbed in the chest,couldnt breathe or relax nothing, the next day i was back in hospital with a lung infection they kept me in for 5 days now i am at home breathing getting there just cant get rid of this scared feeling i am not sure if i was supposed to post this on here guess i just needed to voice how i feel right now,,feel kinda silly troubling a bunch of strangers no disrespect just need someone to talk to you know, am i supposed to feel so stiff and numb will it get easier xx

[josepentia]

Afternoon all- 25 y/o female from Tucson, AZ here. Was previously "softly" DX'd with TOS (venous and/or Arterial) in '08- had to stop all work up due to relocating and a subsequent divorce. I am now remarried and moved to Tucson AZ, where the medical hunt has begun again. Recently saw a vascular doc in town- and said without a doubt that it is TOS- again, either Venus or arterial, or both. Having a doppler on Wed first thing am and compare those results to the doppler from '08. Can't imagine it will be good, considering my symptoms have gotten considerably worse in the last 2.5 years! Which leads me to my symptoms- which seemed to perplex some Drs along the way:
My left arm- from finger tips to right above the elbow- turns a deep red/maroon color that lasts anywhere from 3-10 seconds. Sensation/temp change is also associated with the color change, as well as swelling of hand/wrist/fingers. After some "shaking" out of the hand and arm, the color will return to normal. I also have noticed with greater frequency that my veins from right above the left pec/chest area across my left shoulder and down my arm- those veins have become more and more noticeable in conjunction with my hand/arm turning red, swelling, temp change, ect.
I know that many people describe a high incidence of pain in the affected limb- I suppose I may be a lucky one, or else I have had symptoms so long that I have become very tolerant of it. I DO however, have what I can best describe as a "Tourniquet" feeling around my left bicep/triceps area. It can begin in the middle of the night, it can have an onset while I'm in the car, at any time really. The pain can last from half an hour to an entire day! Not taking any pain meds, just Advil prn. My left arm- which the measurements are fairly the same to my dominant right hand in terms of muscle tone, gets heavy and tired easily- and becomes almost a dead weight after use of simple tasks- like blow-drying my hair!

My symptoms began in late 07/early 08. Started a small TOS workup that quickly ended for the reasons stated above. The most notable test that I did complete, however was the doppler that CLEARLY showed a complete lack of pulse in left hand associated with TOS maneuvers/positions. Also, had xrays done- negative for cervical rib. Had a Neuro workup- Neg EMG/NCS, neg ulnar nerve damage, neg brain MRI, ect.
Back then, symptoms came around 2-3times a week- so it is was fairly easy to not get too concerned.

NOW- I have returning symptoms every single day anywhere from 3-4 times a day, up to lasting an entire day or weekend (as happened once or twice) where symptoms were coming and going constantly- THAT is when I got worried and have been back in the medical hunt since! Also, I should note- my right arm/hand has been exhibiting the same behavior as my "early" symptoms of my left hand back in 07/08. Time to get on the ball...

My question, does anyone here also have their arm/hand turn RED instead of what is characteristically described as blue or pale white???

Thank you to the forum- It is a relief to know that I am not alone in all of this.


Jocelyn