Member
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Join Date: Feb 2011
Posts: 295
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Member
Join Date: Feb 2011
Posts: 295
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Puzzled
Went to local vascular doc, as blue-arm problem happening more often.
Figured I needed someone local with some familiarity with me, in case I ended up at the local hospital ER.
Despite Yale, Columbia, Mass Gen and NYU saying I had vascular TOS, a couple confirming from scar tissue from shoulder injury, this guy stuck hard and fast to original local doc's saying No, which is why I ended up traveling all over the northeast.
He said I have neurological TOS, since that's most typical.
He said I do not have vascular TOS.
He said it is IMPOSSIBLE to have both arterial AND venous TOS.
He said scar tissue external to the blood vessels is irrelevant and does not cause problems. He said only INTERNAL scar tissue, inside the vessels, caused by continuing compression and irritation, causes vTOS.
Therefore, I did not have vTOS.
He did say that my rib-collarbone spacing was fine, wide and clear.
He said that a CT scan could not show scar tissue, even tho the one I have from Mass Gen reports scar tissue and calcification (or ossification, I forget exact term) at the vessels, radiologist's report, not doc's interpretation.
He said I have scar tissue around the nerve, and kept pointing ABOVE my collarbone area, even tho there is no lab/testing reports indicating such, nor can they because the plate in my collarbone obscures both CT and MRI in the area.
He pressed on some points above in my shoulder and neck, with no results except pain from his thumb, but insisted it's nTOS despite complete absence of any pain shooting or spreading down my arm.
He said it's nerve being compressed by scar tissue causing my hand and arm to go blue and swollen and numb.
Totally denied any possibility of related circulatory problems (like subclavian steal or vertebrobasilar insufficiency), despite my having EVERY symptom at times, like I had written the descriptions myself.
Offered to settle the vascular question by doing arteriograms, tried his best NOT to explain the procedures to me, as I was asking about what type of dye/tracer and what type of imaging (been made radioactive 3 times already this year, have had 5 CT scans of my upper body in the past couple years, refused a few others because I am going to glow in the dark pretty soon), told me "don't you worry about that" and when I persisted and told him why, he said, I'm in there getting exposed every day and I don't have cancer, so...
So.......aside from it's the crummy local hospital, and he was an absolute rude jerk (interrupted every sentence I tried to say or ask) making proclamations, not explanations or descriptions, I'm thinking that if I need an ER some day when I can't clear the blue arm by raising & moving it, I'm better off making my husband drive me to ANY other hospital, even tho they're all an hour or more away, than this local one which is only 20 minutes away.
What about all he said?
How much of that is true?
And if he's a vascular doctor, why was he saying HE would operate to free the nerve from the supposed scar tissue, when there's no vascular involvement?
Oh yeah, and he said he uses the hyaluronic acid sheets during surgery to prevent further scarring and adhesion, tried to tell me it prevents further scarring, IF I was even to scar again, I make keloids like crazy inside and out, when I started pointing that out he backtracked, and insisted he would "buy me more time". He also said that getting the steroid shots in the external keloid "makes more scar tissue inside".
Huh?
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