Arteriovenous Malformations

Why the interest?

When I was nine years old, I had a massive brain hemmorage that was caused by a right parietal arteriovenous malformation. I was hospitalized for six weeks so that first drugs, and then surgery, could help me. While I made a near complete recovery, I was unusual.

Ever since then, I have had a strong interest in the topic. In many ways, it has more of an emotional impact on me now than it did the first ten years after it was discovered. For me, the lasting impacts include first a strong fear of needles of any kind and damage to the visual cortex of my brain.

The fear of needles isn't a medical cause, but just a common side effect of being poked, prodded, and in general used as a human pincushion over the course of several weeks. I can't even watch a diabetic test their blood sugars, or a TV show where a shot is given.

The damage to the visual cortex isn't very severe, just enough to notice. It means I need to have my vision checked on an annual basis just in case there is a problem I missed. Every few years now, I have to have my peripheral vision checked in case there is further degradation. Oddly, the damage is not in the areas critical to driving. I have near perfect peripheral vision on the horizontal plain (x-axis). However, I have damage to the lower left corner and some to the upper left corner.

Before you ask, yes, I have written a survivor story of my own, but no, I will not post it for public consumption. It is very private to me and contains a lot of personally identifiable information that would be hard to remove without taking away a lot of the story. It isn't as simple as just doing a global search and replace on the name, things like the year, which even comes out in what technology is used is also significant enough that I wish to not advertise it.

How bad is it?

Most AVMs are never noticed until a routine autopsy discovers it. My doctor indicated he got a few such cases per year, and he was a specialist in neurological disorders. They aren't that common, but nor are they so incredibly rare as to be poorly understood.

But that doesn't really answer the question of how bad they are. There are really two kinds of issues, small AVMs and large AVMs

Small AVMs often have few if any symptoms to give advance warning. If there are symptoms, it usually is the extreme case of a sudden massive hemmorage. In my case, I had absoltuely no advance warning. I was a healthy and seemingly normal kid. The sudden massive headache was enough to cause me to go home and lay down. A day later, I was in the hospital, diagnosed with a six centimeter (a little over two inch) blood clot in the brain caused by a ruptured vein. The recent incident with Senator Johnson of South Dakota sounds like a very similar case, no advance warning until the blood vessels ruptured.

Large AVMs often have a slow leak which can produce headaches, loss of sensory ability (sight, hearing, etc.) that cannot be explained by other causes, etc. In one survivor story I read, a child had complete loss of vision in one eye, not realizing it was at all unusual.

Written by Alcourt
Last modified 2006-12-21