Replies to This Discussion

Permalink Reply by Bree on November 12, 2011 at 11:02pm

I am in a very similar situation. About three weeks ago I was diagnosed with an AVM (in the left anterior lingual gyrus part of my brain). This was found coincidentally as part of an MRI. I have seen one specialist (who wasn't that helpful) and I will soon see another.

So I did some research on-line at http://en.wikipedia.org/wiki/Cerebral_arteriovenous_malformation and other places and I discovered the risk of a major bleed is quite high. About 3% per year - or 65% sometime in my life. But when I looked further this risk seems skewed to be for those that have already had a major bleed and those with other conditions, epilepsy for example. Does anyone have data on the risk of a major bleed for a 3cm AVM where no other conditions are prevalent?

Permalink Reply by ky on November 14, 2011 at 6:21am

Hey Bree, I was exactly in similar boat about 3 months ago..My neurosurgeon gave me the stats that its about 70+ % chances of bleed for your age group(30-40 yrs) during the lifespan with your condition (where there were absolutely no symptoms other than some headaches). That statistic didn't change my decision to go and treat it as I wanted to get it treated from the day I came to know about it. But I can definately understand the dilemma. Good Luck with your decision and hope all work out well for you. Best Wishes.

Permalink Reply by marcylynn on November 14, 2011 at 9:16am

Hi Bree-I have known about my AVM for over six years now (I just turned 33) & only found out due to a car accident. My neurologist told me I had it since birth & he said that since I have not had any issues with it at this point in my life to be just monitored. I think there is a lot of conflicting information regarding AVM's. Since I have a very low chance of death if my AVM bleeds I am content at the moment knowing that if I have a bleed that they know what to do with me & I will deal with it then. Right now I am living a normal life & it scares me more to go into surgery and mess with it & I could possibly have more issues than just leaving it alone. (although don't get me wrong-I have bad anxiety when I have a headache or something doesn't feel right-but I do a lot of self talk and try to stay positive) I had also talked to a different doctor earlier this year, after my neurologist, to try to get a better understanding of it & she had told me also that there is only the 3%/year & you're more at a higher risk if you already had a bleed or have other symptoms already with the AVM. It's a very tough decision & my advice is to just do your research & get many opinions on your options, risks of surgery & risks of leaving it alone. Feel free to email me if you would like to talk-I've been dealing with this decision for quite some time now :)

Permalink Reply by Daniella on November 27, 2011 at 3:21pm

Hi Heba
I have just read you post, I am 37yrs old and found out about my AVM July this year, my is 3cm Grade 2, so far I have no side effects except possible swelling behind eyes. So I am faced with a similar decision to you, do I leave it, have surgery or GK......My life time risk of a bleed is between 25 - 50%, my risk in surgery is less than 5% but its brain surgery.
I know what it is like trying to live with this and understand how hard it can be.
Keep me posted on what you decide.
Take care
Daniella

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