Question about a "bleed"

Hi, As some of you know I am new to this forum. I was just diagnosed with an AVM. As far as I know it has not started to bleed. I’m waiting to hear from the Neurosurgeons office to make an appt for a consult to see what the plan of action will be. I have read some of your stories and some of you found out about your AVM’s by a bleed. What are the chances of a bleed and does the chance get higher with increase in age? I am 38, 39 in Jan and am worried that because I am almost 40 that maybe my avm has a higher chance of rupturing or bleeding. Now that I know it’s there it’s freaking me out. I guess I just have to wait and see what the Neurosurgeon says after he reviews my MRI results. Hopefully they call me today, I want to know asap. It’s like a time bomb ticking in my head now… literally… :frowning:
For those who have had a bleed please share your experience with me if you don’t mind. For those who have an active AVM with no bleed I’d love to hear from you as well.
Thank you for your time.

Rachel, we know what you’re going through and it’s perfectly normal.

From what you wrote it sounds like you have not had a bleed, so know that you are very lucky. You want to have this taken care of so that you don’t have to go through that - even though the chances are small, you don’t want to risk it. Your treatment options depend on your AVM size and AVM location. Only your neurosurgeon can tell you the best treatment.

And for something this serious, always get a second opinion from a different neurosurgeon.

If you want to read about people’s experiences, most have written about it in their profile. Also check out the FAQ section. Thanks, Liam.

Best of luck and keep us posted.


Welcome to the forum Rachel! I was diagnosed with an AVM in my left parietal lobe last October, and they told me there was no immediate risk of a bleed just yet, but they want to do preventive surgery on it to make sure it doesn’t suddenly go off if I do something too strenuous.
It was discovered last October and I’m 41½ now. The neurosurgeon and the vascular surgeon who have been discussing my case at the UMC in Utrecht both agree that the risk of a bleed should be minimized by embolization (glue) followed by radiation to get rid of the remnants.
I hope you’ll find all the answers here that you were looking for, as long as your doctors are still searching for the best way to help you. I’m crossing my fingers for you!