About Me and My Brain AVM

Have you ever heard of a brain AVM? I hadn’t.   brain avm

I’m 34 years old.  Up until I was 22, I appeared pretty healthy (well, a little overweight, but not enough to cause any major problems).  But I discovered that year, after I had a small stroke in a job interview (true story, I swear) that I wasn’t as healthy as I appeared. Some medical testing revealed that I had a vascular condition in my brain called an arteriovenous malformation, or a brain AVM.

Brain Arteriovenous Malformation (AVM)

The brain AVM (you can get an an AVM anywhere in your body) had been there since I was born, but since I’d never been dropped on my head (for which I’m grateful to my parents, don’t get me wrong) or fallen on my head or been hit hard on the head hard enough to go to hospital and have a CT scan, no one knew it was there.

A brain AVM doesn’t tend to give people much trouble until early adulthood or older…when it begins to leak blood into parts of the brain where it shouldn’t be. This is called a hemorrhagic stroke, and it can cause a lot of problems. Fortunately for me, that first stroke didn’t leave me with any aftereffects. But the brain AVM needed to be treated before it bled again and possibly did do some damage.

My Brain AVM – Treatment Tales

The Brain AVM team at Toronto Western Hospital evaluated my case and discussed my options with me, and 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, I also had another a stroke – a much bigger one this time. I lost most of the function in my left arm and leg,  Over a decade 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 have a job, and I’m still noticing function return in my arm, hand, and leg even after eleven years (the “ceiling” for that sort of thing is usually five years, the doctors tell me).

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 ScanComputed 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.

MRIMagnetic 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.

For more details on my AVM story, listen to an interview with me (transcript included) here: 

http://abledis.com/12-12-12/sarah-levis

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