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Monday, 28 May 2012

My Brain AVM Story: May 29, 2000 - Open-Brain Surgery


I had two surgeries to fix my brain AVM. One was the open-brain surgery, of course, but the first was an embolization. People who have had an angiogram or angiography will be familiar with embolization. The doctor fed a wire through the artery in my thigh, up through my body into my brain. He used an adhesive attached to the wire to reduce the size of the AVM. That's a very simplistic explanation, but it's the gist of what happened.

I have to comment on this, because I still think it's amazing. I'd never had surgery before or anaesthesia before.  The anaesthesiologist asked me to count backwards from 100, and suddenly I wasn't awake - and then I was. It seemed like I had just closed my eyes. I wouldn't learn until later that the surgery had taken four hours.

"Can we get this started?" I said, annoyed.

"It's done," said a nurse that I didn't recognize. "You're in the recovery room."

I was stunned.

Bring on the Open-Brain Surgery!


I don't remember much of the weekend that followed. I do remember being so convinced one night that I heard my dog's toenails on the floor in my room that I called the nurse to ask who had let her in (more a testament to the drugs they'd given me than anything else). She assured that there was no dog in the room...but my family's mutterings during altered states of consciousness in hospitals is a whole other blog post.

I do remember the night before I went in for my open-brain surgery, just a couple of days later. I was still 
in the hospital. I sat with my family. I called my friends on the pay phone.  I took a shower, since I didn't know when I'd next get one after the open-brain surgery. I made sure that my dad knew where my letters to everyone were, in case something went wrong with the open-brain surgery. I did sleep, surprisingly.
And early in the morning, twelve years ago today, I waved to my dad and my sister as the nurses wheeled me away on a stretcher for open-brain surgery.

There wasn't much prep. They only had to shave a little bit of my long hair, which was really nice, because I'd been psyching myself up to lose all of it. I thought that they just automatically shaved your head for open-brain surgery. I'd later cut my hair short, but I was happy to keep it for the moment.  In the operating room, I talked briefly with my neurosurgeon, Dr. Tymianski. The anaesthestiologist had me count back from one-hundred, and suddenly I wasn't awake -- and then I was. And I was annoyed - because there was a tube down my throat and a piece of plastic over my tongue, and no one would move it. You can read about that here: http://www.girlwiththecane.com/finger-spelling/

Sometimes things don't happen quite the way we think they will.  Dr. Tymianski and his surgical team weren't able to totally fix all of the AVM during the open-brain surgery. A piece had to be left, which later sealed itself off and is no longer an issue. A bleed in an area not far from the AVM site a couple of days after the open-brain surgery caused the stroke that wiped out my left side and so drastically changed the course of my life.

But I knew the risks. Dr. Tymianski told me that there was a 10% chance that the open-brain surgery would cause irreparable damage, and a 15% that it would cause damage that we could repair. That meant there was a 75% chance that nothing bad would happen. And I'd gotten through my first stroke with no damage, but statistically, if I left the AVM alone, I was going to have at least one more. Who knew damage the next one might cause?

So I played the odds and I hit that 10% that no one wanted me to hit. As my father said, "You can't expect someone to put a Mixmaster in your head for 14 hours and come out totally affected."

But he also said, "Just because your life turns out differently than you expected, doesn't mean that it has to turn out worse." And he was right. :)

Let's all toast to that today: Just because life turns out differently than you expected, doesn't mean that it has to turn out worse.


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