Welcome!
You're Raffi's grandma? Marilou and I have been in touch on some other forums, private msg, and on the phone.
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It's great to "see" you here.
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Please feel free to PM me here (click on my name) or write me here on the boards with any questions I can answer for you. I am 40 and was dx'ed with hydro at 3 weeks old.
As far as I know, there are no docs here. We're all just patients and family members dealing with neuro this-or-that.
As for what a neuro can do...that remains to be seen, I think. I have personally had a long history with neuros and trust them about as far as I can throw them
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. I last saw one 13 years ago, in spite of a lifelong epilepsy history, but my nsg, who's known me all my life, now handles all my brain matters.
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A neuro might have some thoughts on pain management, but I don't think he can do much else. Neuros are not licensed in surgery, so all they can do is treat symptoms. Personally, I think Raffi needs another nsg opinion.
(((((((((((((((HUGS)))))))))))))))),
LIZARD