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Introduction

PostPosted: Wed May 29, 2019 12:54 am
by Krystalnameth
Hi all... I’m new to the group but not new to cavernoma. May 31, 2007 I had a bleed (I guess they refer to it as a stroke as it was really impactful and resulted in a 7 day ICU bed). I was off work nearly 4 months and then just went back full time wanting desperately for my life to return to “normal”. Fast forward ... I’m approaching my anniversary of my bleed and am again off work (this time it’s been 2.5 years) with no real hope of returning due to temporal lobe seizures. My Cav is too deep to operate on and so I’ve been on the medication journey looking for the right seizure med.

I’m located near Regina and don’t know anyone who has one (or more) of these and I don’t know anyone who understands except my husband but I’m sure he’s sick of hearing about it. Looking for someone to chat with, meet for coffee or text with just to have some social contact with someone who understands, and can help me remember I’m not crazy!

Thx for taking the time to read my intro and hope to hear from folks soon!
Krystal

Re: Introduction

PostPosted: Mon Jul 15, 2019 6:05 pm
by amalee
Hi there,

I'm in Alaska, so not close enough to chat n person, but I also have cavernous angioma in my right temporal lobe and it's almost in the middle of my brain so I've opted not to operate. I'm not on here frequently (it's been years) but feel free to contact me.