We are AVM survivors, here for your support.
May be AVM free by February!!!
I'm heading to St. Louis! I'm in San Antonio right now but just got a call telling me I have an appointment on 1/18 for my 2nd consultation. Excited but anxious. They said they will review everything before I get there and have a tx plan done. They said they would schedule procedures/surgery for the following week so I don't have to fly back and forth. I'm just hoping they can do the surgery. Fingers crossed! ~Elizabeth
Comment
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Comment by ewillis on January 7, 2013 at 9:37pm -
Ksucat- I am going to Barnes Jewish Hospital because they are ranked in the top 10 nationally and my brother lives near St. Louis so my mom will have him with her. I live in NH and teach in VT but am out on medical leave right now. My AVM is a grade IV, located posterior left frontal lobe and includes primary and secondary motor cortex. Dartmouth Hitchcock can not do the craniotomy because of the skill set needed to not cause paralysis. They have a great neurosurgery department. They team up with Washington University Medical school. Have a great week. ~Elizabeth
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Moderator Comment by Barbara H. on January 7, 2013 at 4:40pm -
Super Hurrah!!!
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Comment by Ksucat on January 7, 2013 at 9:41am
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Why St. Louis? Just curious since I am looking and trying to figure out best place within driving distance.
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HHT Diagnosis or Suspected
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Dreams... changing
Posted by Michael on May 2, 2013 at 3:14am 5 Comments 1 Like
Hello there,
how it's for you? In my case, I have the paralysis since last october 2012. Before that I was very active with cross country running, dogsport, and so on. The good thing: In my dreams I had no Paralysis. I run in my dreams,…
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One year since my bleed, more or less
Posted by tdz103m on May 2, 2013 at 5:34am 3 Comments 4 Likes
I don't know exactly when it happened because I slept through May 1, 2012. All day.
May 2, I was able to move around a bit. May 3 a bit more but by May 4th I was feeling in the deepness of it and told my wife to dial 911 and it was into the…
Ben's Friends Co-Founder Scott Orn Featured on Thoughtbot Podcast
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