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Permalink Reply by Alyssa Walker on April 20, 2010 at 9:14am

I am in the process of finding out what treatment they choose for me so I am choosing to only tell select people. I do not want to have to explain to everyone something that I am still a little confused about. I really have only told my family, my manager at work (in case I need to request off for a period of time) and a FEW other people. I don't want to say, "here are the treatments that can happen or they may choose to do nothing." If they decide that my AVM is inoperable or just decide to do nothing, I don't feel it necessary to tell people. I will say though, talking about it helps so maybe it is good to tell people. I also am afraid they will think I am trying to get attention so I don't feel like everyone needs to know. Just close friends and family... at least right now.
Alyssa

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Permalink Reply by jessica on April 22, 2010 at 6:46pm

i can definatly understand that. in the time between when it was discovered and we figured out what treatment to do i only told family and one close friend. one of the reasons i told my teammates as well, besides being so close to them, but i was with at least one of them all day at school so if something happened during the day they could tell the paramedics what was going on.

Alyssa Walker said:

I am in the process of finding out what treatment they choose for me so I am choosing to only tell select people. I do not want to have to explain to everyone something that I am still a little confused about. I really have only told my family, my manager at work (in case I need to request off for a period of time) and a FEW other people. I don't want to say, "here are the treatments that can happen or they may choose to do nothing." If they decide that my AVM is inoperable or just decide to do nothing, I don't feel it necessary to tell people. I will say though, talking about it helps so maybe it is good to tell people. I also am afraid they will think I am trying to get attention so I don't feel like everyone needs to know. Just close friends and family... at least right now.
Alyssa

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ModeratorPermalink Reply by Ron, Kansas on April 22, 2010 at 9:30pm

Our son was in middle school when he started having 'zone out' seizures mostly and a few petite seizures (not with an AVM). In MS, he didn't say too much as we were still trying to figure out what was happening. We made sure his teachers and the nurse knew what was happening with him and what to watch for.

By high school, he was more comfortable with it. His buddies knew, and since he was playing sports, his coaches knew. They told all the players if Allen starts acting goofy, bring him to the bench. They were fine with it. And he was confident in himself. He handled it matter of factly saying "this is what I have, here's what might happen, I'm ok with it." Being a girl might makes it more difficult.

It's not like you chose to have this or anything....................

Best wishes,
Ron, KS

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Permalink Reply by Chris on April 24, 2010 at 7:13am

Interesting... I don't really know how I could of handled knowing I had something like this inside my head and continued on with school and life, acting like nothings happened. Mine occurred a little differently, so that wasn't the case. My whole school knew, my principal even visited me in hospital the night it happened. I was in there over a month, so it was a little hard to keep quiet about. But I'm glad, I had a lot of support, it really helps, not just yourself but your family as well.

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Permalink Reply by Christina on April 27, 2010 at 6:56pm

I'm a teenager, but I was kind of in a weird situation as far as the discovery went. It was found on a fluke after I turned eighteen when I was on an eighty-day backpacking trip. A letter was sent to me, but my parents opened it, assuming it was a bill because it was from the hospital I go to for an unrelated condition. My parents told me when I got home and I made the decision to have the surgery as soon as possible (though needed to happen in the following few months), so I could maximize my chances of starting school in January. I was already really weird about being back in society and all of my friends were stressing over finals. We had a blog we shared to keep each other updated on our lives after high school, so I explained the low-down a couple days before I went in for surgery, which was only about two weeks after I found out about it.

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