Does this mean that there is only a 4% chance of a bleed for any given year or is it additive as in after 4 years the total Chance of a bleed is then 16% or what? I am confused. Please help Me understand.

Almost forgot, if it is additive, when does the adding start? at birth? at the onset of the first symptoms? ect…

Hi Shannon and Bob,

There has been at least one thread on this before, and no one really seems to agree on how to interpret the numbers.

Here’s a link to the other thread: http://www.avmsurvivors.org/forum/topics/life-expectancy-1

The figures given in the chart on the Toronto site (you’ll see a link in one of the posts) seem fishy to me…why should the percent-chance-of-a-bleed clock start at discovery of an AVM, when most AVMs are congenital? A person whose AVM is discovered at age 40 has already made it through 40 years of risk, but the figures don’t seem to account for that. Counting from the onset of symptoms might make sense, but there are SO many people who have no symptoms before a bleed.

The brain is so delicate and AVMs are so rare that the numbers might not really be meaningful…you need a large number of comparable cases in order to make meaningful statistics, right?

We tried to work out the numbers so we could compare them to my husband’s risk of adverse events during surgery, but in the end we decided that our doctor had enough experience with AVMs that we could trust his advice. My gut feeling is that if you discovered your AVM because of symptoms instead of by accident, it’s already giving you trouble, and the chance of future trouble is there. Even if it doesn’t bleed, it’s “stealing” blood from the rest of your brain (think of the AVM vessels as superhighways where the blood can flow more easily than in the rest of the brain), and there’s a risk of seizures to consider, too.

I hope you have a doctor you can trust, and that you can seek a second opinion if you’re in any doubt.

My brain guy told me my risk increases by 4% per year. According to the table for UHN I have a 75% risk of a bleed. I chose not to worry too much about the numbers and live day by day.

We were told if you got 100 people together in a room in January 3% or 3 people would have a bleed/rupture. 1 would die and 2 would be recovering. The following Jan. out of those 97 people 3% of them would have a bleed/rupture. So every year the amount of people left unruptured decreases. My daughter is 10 and unruptured and they said her risk over her lifetime is 90%. Her first embo is tomorrow