AVM Survivors Network

A Letter From Your Brain


Thank you for this beautiful letter :pray:t3: God Bless You


Sorry everyone I’ve been very busy I got gamma knife. That one really well and then on the front left side of my brain I have a swelling I finally had what they call a grand mal seizure my first one was scared the heck out of me cuz I thought I was having a stroke but I wasn’t having a stroke I was having a seizure and I was a grandma and I’m sorry I haven’t kept you guys in loop I have been really busy it’ll taking care of my dad who’s going to be 87 years old and he’s not doing so good thanks to Asian orange is taking his life and he’s going downhill have a good one buy


I haven’t visited AVM site it a couple of years. I love your letter. I was one of the fortunate ones. In retrospect I had symptoms for years. It took feeling like an axe was being slammed in my head (turned out it was exact site of AVM), feeling like my head was exploding during the night & finally atypical seizures. Again by a total fluke my oldest son was living with me during his year between college & medical school. He found me up during the night doing the oddest things & I had no memory of them. He urged me to call my doctor who ordered MRI. I had an embolization followed by crani & excision of AVM. I was truly one of the lucky ones.
I had no bleed & only some facial drooping the day after surgery. But if I’m honest with myself, my brain is not the way it was before.

Fast forward nearly 14 years later, my 4 kids are all married & I have 9 grandchildren. As babies my kids wouldn’t let me pick them up, never walk with them, I can’t babysit them alone, etc.

At 64 I’m still working full time as a nurse practitioner. I have to confess I’m not 100%. My AVM was right frontal lobe along the motor cortex. There are times I have balance issues, my memory is not as good. I went a year without a headache but they’re back (not extent or frequency as before though).

I love the way you explained dealing with your brain. I’m going to try to follow your lead on working with it.

Thank you so much for your letter. It will really make a difference in my thinking about all of this.