Sure is hot. I imagine your stress level is set mighty high too. I admire you for the fortitude you're bringing with you on this quest for the right/best answer.
I came across your post over on the Rare Disorders Forum when I was searching for where I might suggest you go from here, & I wanted so badly to take your hand & give it a squeeze--or just pull you into a full-blown hug--when I read (re: the recommended surgery)
Quote:
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I haven't scheduled it yet, I wanted to hold out for as long as possible since the idea of having my head cracked open scares the begeezus out of me.
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Yeah. I sure get that.
I'm sorry that I haven't been able to find an existing conversation for you to join, but do return to the Rare Disorders Forum and start your own thread there:
http://neurotalk.psychcentral.com/fo...daysprune=&f=2
You may find that the one you replied to from 2010 has gotten new hits, but if not just start your own--introduce yourself, tell your story, ask your questions. Just because it's not being talked about now doesn't mean no one there will have info of use to you.
So look around, keep coming back, let us know how things are going for you.
How you are feeling about how things are--or aren't--going.
