Life Expectancy

Does anyone have any info on how long a person with an AVM of the brain is expected to live. The reason I ask is I saw a report that age 40 you have an 85%chance of a bleed, and it goes up 1 1/2% each year. Therefore, they are saying that by the time you are 50 you will definately have a bleed. Is there anyone that has a different take?

Hi David,

Do you remember where you saw this info? I’d be interested in reading it, too. I seem to remember my husband’s doctor telling us a MUCH lower number for the chance of having a bleed in any given year.

Jorie

We were told that the chance of a bleed is 2-4% each year cumulatively. That is why they are more aggressive with treatment of children, especially if they have already had a bleed. Given the life expectancy of my 10 year old, there would be about a 100% chance of another bleed during her lifetime, adding up the cumulative risk over many years. Hope that helps.

Hi Jorie,
I tried to find the website that I read that , but was unable to find it. I posted it on here a few months ago for someone else.If I come across it I’ll forward it to you. Every Dr. I speak to seems to have a different opinion on this subject. I really think that it’s because noone really knows.
Peace,
Dave

JH said:

Hi David,

Do you remember where you saw this info? I’d be interested in reading it, too. I seem to remember my husband’s doctor telling us a MUCH lower number for the chance of having a bleed in any given year.

Jorie

Hello All,
I know I have read this several places, attached is just one of them, but they all say the same as far as the older one gets the greater chance they have of a bleed.
I find it interesting also about the asprin comment, as my husband was 52 when his burst, never having any idea before that that he had an AVM. Several years ago his general practitioner requested him start taking a low dose (81mg) asprin daily, as most docs push that when you get around his age. I wonder if he had never starting that asprin regimin would his have burst??? What do you all think?

http://www.cumc.columbia.edu/dept/cerebro/AVM.htm
Marie

This controversial “chance of bleed” is not new. When our AVM showed up about 1991, we started reading and at the time, the magic number was 2%. The only discussion, was it cumulative? We received different answers from many sources. Some said it was NOT cumulative, others that it was.

I’m not really sure it matters that much. We looked at our chances of fixing it vs risks, and proceeded that way.

As for children, it might just be that kids are much more resilient in healing, so maybe their risks are better if treatment is applied.

To me, it’s fun to discuss it, but not sure of the value. And to be inclusive, you would probably need to figure in your chances of being in a car wreck, developing cancer, etc, in the next 10-20 yrs.

Doubt that this helps, but it’s my two cents. Whether it’s cumulative or not, live life to the fullest that you can. If you sit and ponder “Heck, I’ll probably have a bleed about age 60”, that won’t help your situation (unless it provokes you to treatment).

Best wishes,
ron, ks

Here is some information I found from the following website, which matches the info Marie found above:

http://brainavm.oci.utoronto.ca/malformations/content/B_AVM.htm

Risk of Bleeding from an AVM

(Life Expectancy) -> (Cumulative risk of bleeding)
10 years -> 33.5%
20 years -> 55.8%
30 years -> 70.6%
40 years -> 80.3%
50 years -> 86.8

In the example this site provides, a 40 years old has an AVM. If he’s expected to live for another 40 years, the risk of him bleeding over that time is a little over 80%. This an individuals cumulative risk of bleeding over their lifetime.

Hope this helps and remember all AVM’s are different, these are just ballpark figures

Thanks, Ray

hi im a 40 year old male who had 2 avm one burst in the brain stem area in october of 2012 and the doctor was able to successfully remove it. but i have some deficits now slight palsey left eye and right side numbness. the other one is the frontal lobe about the size of a pea. he he says he can get that one too. but i was reading somewhere they are coming out with a treatment that slows the genes down or something was wondering if anybody heard of it???

My local neuro-surgeon told me a story of a patient he had once. The man was in his 40's when his avm was discovered and it took up over 1/2 of his brain. My dr. sent his records all over the country (USA) and every dr. said the treatment would be worst than living with it. That man lived to be in his late 70's and passed away from a heart attack. His avm NEVER gave him any problems that whole time.

Ever since he told me that story, I never put much stock in statistics. My avm surgeon told me I'm at an 86% .... That was 6 years ago and I'm 51 now (smiles).

Ben

Ron,
As usual, you make a good point (smiles). The chances of being in a car wreck, having a different type of accident or developing a terminal illness are probably just as high.

Ben

Hi raider,

No. I haven't heard of this. If you run across an article about this. Please post the link to it, I would be interested in reading it.

Well said Ben. I knew of an orthopedic surgeon who lived well into his 'golden years', 80's I think, before his avm ruptured and took his life. I'd say this doctor led a very productive, satisfying life with no intervention. IMO, all the stats of rupture rates etc, are all speculation. Our avms are unique beasts, some worse than others. -GK

Okay, I'll weigh on this one. When I was dxed in 1988, I was 27 years old. I was told:

I was told both 1%/year and 2%/year, cumulative, from point of AVM becoming symptomatic. I was also told when I had my bleed last year, there's a greater chance for a bleed within a year. Finally, there risk of bleed decreases after the mid-50s.
I think it boils down to medicine being an art AND there is no standard treatment for AVMs. It is probably related to better communications between doctors and better diagnostic tools.

My doc told me last year that i have a 1% chance per year of rupture and it is cumulative from the time of diagnosis.

But as Greg and Ben have said each AVM is unique and some may never rupture or cause problems. I have had my AVM for 30 years with no symptoms at all so far as mine was an incidental finding from a unrelated ruptured aneurysm.

Depending on who I chose to believe my over all chance of a bleed was 1-4%. Some felt the risk wouldn't increase with time, or the likely increase was so low as to be virtually non-existent. Still others said there was an increased risk of a bleed with each and every passing year. Most felt about a 1% chance but at least one other specialist said 2%. In any case most seemed to agree that my risk of a bleed would eventually begin to decrease after a certain age. As for when that would happen again no real consensus. Some said the risk would begin to go down in my early to mid 40's. Others said after the age of 50. Others speculated perhaps after menopause.

I don’t know I have AVM .I live thinking about that everyday.I just live 1 day at a time

Discovered mine 25 years ago when I was 19 when I had a stroke. Had the surgery to fix the area and have been great since then. Just curious - why wouldn’t people just have the surgery if they were under say 60 years old? 2 Percent chance of rupture per year seems like too big a risk if you are young.

Discovered mine at 25, have “micro-bleeds” first Dr says wait and see what it does, treat symptoms. (Aka do nothing) its been a year and things are worse. Going for second opinion today. I want this thing out.

Mike, You ask a good question.

Mine was and is inoperable and I didn't like the possible side effects from the gamma knife that I was offered. That's why I waited 16 years to have it treated (I was 29 when it was discovered and with no problems). I agreed to have it treated (in 2007) because my avm became symptomatic for me. I now have two small ones left and a lot of problems as a result of the G.K. That's my reason for it anyway (smiling).

Ben

Ben,
That makes sense. Not familiar with the gamma Knife as my surgery was done the old fashioned way (have the scars and dents on my head).
Hope you feel better and never lose faith that you will someday be better.