About Me and My Brain AVM

Have You Ever Heard of a Brain AVM? 

   
I'm 45 years old.  Up until I was 22, I appeared reasonably healthy.  But that year I discovered that appearances can be deceiving. 

It only took having a small stroke during a job interview to make me realize that something was wrong.

You read that right.

Brain Arteriovenous Malformation (AVM)

Some medical testing revealed that I had a vascular condition called an arteriovenous malformation, or AVM.

You can get an an AVM anywhere in your body; mine was in my brain, and had been there since I was born. However, since I'd never had a head injury serious enough to require hospitalization and imaging, no one knew it was there.

A brain AVM doesn't tend to give people much trouble until early adulthood or older. At that point, it can start to "leak" blood into parts of the brain where blood shouldn't be. Called a bleed or hemorrhagic stroke, this sort of brain injury can cause serious problems. Fortunately for me, my first bleed didn't cause any damage. But the brain AVM needed to be treated before it bled again. I perhaps wouldn't be so lucky the next time around.

My Brain AVM - Treatment Tales

The Brain AVM team at Toronto Western Hospital evaluated my case and discussed my options with me. We finally settled on an embolization and a craniotomy. The embolization made the brain AVM much smaller, and then they were able to seal off almost all of the brain AVM with the craniotomy. However, after the craniotomy, I had a second, much bigger stroke that caused major weakness in my left arm and leg,  Over two decades later, I'm still living with the effects of that stroke.

I've been lucky to have access to great physiotherapy and occupational therapy, though, and a wonderful support system. I live on my own, I've worked for almost twenty years, and I still notice improvement in my arm and leg when I really work at it.

You'll be hearing more about my story in this blog (but not exclusively, of course). Here are some terms you may find useful to know:

A Short Brain AVM Glossary

Arteriovenous Malformation (AVM) - A defect of the circulatory system that is generally believed to arise during embryonic or fetal development or soon after birth. It is comprised of snarled tangles of arteries and veins.  AVMs can occur anywhere in the body, but are especially dangerous when occurring in the brain or spine.

Cerebral Angiogram – Imaging tool used to detect and show the characteristics of brain AVMs. Angiography provides the most accurate pictures of blood vessel structure in brain AVMs. The technique requires injecting a special water-soluble dye, called a contrast agent, into an artery. The dye highlights the structure of blood vessels so that it can be recorded on conventional X-rays.

Conventional Surgery – Open-brain surgery. Involves entering the brain or spinal cord and removing the central portion of the brain AVM while causing as little damage as possible to surrounding neurological structures. This surgery is most appropriate when an brain AVM is located in a superficial portion of the brain or spinal cord and is relatively small in size.  Also called a craniotomy.

CAT Scan – Computed Axial Tomography scan. CAT scans use X-rays to create a series of cross-sectional images of the head, brain, or spinal cord.  They are especially useful in revealing the presence of hemorrhage.

Endovascular Embolization – Surgical procedure in which the surgeon guides a catheter though the arterial network until the tip reaches the site of the brain AVM. The surgeon then introduces a substance that will plug the main part of the brain AVM, correcting the abnormal pattern of blood flow. The materials used in embolization include  fast-drying biologically inert glues, fibered titanium coils, and tiny balloons.

MRI – Magnetic Resonance Imaging. Uses magnetic fields to detect subtle changes in neurological tissues.

Radiosurgery – Procedure that involves aiming a beam of highly focused radiation directly on the AVM. The high dose of radiation damages the walls of the blood vessels making up the lesion. Over the course of the next several months, the irradiated vessels gradually degenerate and eventually close, leading to the resolution of the AVM.

Definitions are used courtesy the National Institute of Neurological Disorders and Stroke (http://www.ninds.nih.gov/) with their permission.