i have to chime in here. briefly (stop laughing
). basically, i thought both of these articles were fairly informative and i thank both fern and jo for posting the links to them.
but as someone who has been dx'd with "true neurogenic TOS" (albeit many years after the onset of my sx, mind you
), i have GOT to take issue with the statement made in both of these diatribes that this "rare" form of TOS (another questionable characterization, but i'll let that go, for the moment... where IS jane when i need her?
) is virtually "PAINLESS."
WTF?!?!?!?! i beg to differ, folks. there is nothing about it painless. and just for the old recordbook, the man who coined the phrase, "true neurogenic TOS," the late dr. asa wilbourne of the cleveland clinic, was a NONBELIEVER.
yes, you heard me. so unless you have vascular TOS or like me, a badly atrophied hand and could have presented visible proof to the man, he would have laughed you out of his office if you came to him seeking tx for TOS. and his legacy lives on in medical articles like these, where the form of TOS which bears his "signature" is still being characterized as "painless" (it isn't), unilateral (another lie), striking women ages 35 - 55 (i was 25) who have cervical ribs (which i don't).
but get this - there's no other way to get the hand atrophy, according to the good doctor W., other than to have this rare form of thoracic whatlet? syndrome... so i'm stuck with "his" dx. i think i'm starting to hate this, the more i learn about the man.
so here's the thing. you tell me. who said this?-
i have met the enemy... and he is us!
[why, 'twas POGO i do believe.
]
now i will say that my neck, head, shoulder, upper back, arm pain, etc., was/IS so bad that the wasting of the hand muscles has been fairly painless in comparison. perhaps that is what was originally "intended," but given dr. wilbourn's battles with the good dr. david roos i RATHER DOUBT IT, and that is not what the material in question states at all, is it.
but, hell. now that the hand is "end-stage," it friggin' aches all the dang time! it's ALL pain and NO "less"!!! so there you have it. i said my piece. OK not briefly. shoot me!
alison
"Be Brave"