Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 09-15-2006, 06:14 AM #7
evie evie is offline
Junior Member
 
Join Date: Aug 2006
Posts: 14
15 yr Member
evie evie is offline
Junior Member
 
Join Date: Aug 2006
Posts: 14
15 yr Member
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Hi all

My name is eve and I live in Switzerland. As some of you know, I have bilateral, wide cervical ribs and vascular (arterial) TOS which, however, is but a small problem area in my body that seems to be intent on picking rare forms of joint, connective tissue and other problems. The latest one of these is hnpp which was confirmed by genetic testing just 2 weeks ago. It is the cause of quite a few of my neurological problems and mimicked neurological TOS enough to fool the docs for 4 years.

I've had too many surgeries in the past and already have too many lined up for the future...if ever I get a spare decade, I might tend to all of them and get myself fixed up for good at which point I will change my name to bionic or cyber woman. In the meantime, I just try and live as normally as possible....a little bit more difficult right now as I have received the labels "incurable and untreatable" and am still digesting that.

As the choice in dealing with all of this seems to be to cry or laugh, I try hard to laugh...it mostly works but people have told me that, for some weird reason, my humour keeps getting blacker and blacker...

cheers
eve
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