AVM Survivors Network

Ugggg frustrated


I’ve known I’ve had this AVM for 25 years after an MRIfor something else. I was told only not to worry about it so I didn’t. I had a bleed in October. I guess it’s very large 23 mil. I’m in central NY state. I’ve been referred back and fourth. It’s freakin February with no plan for treatment. Frustrated, scared and stressed. Not trusting healthcare industry.

Location and size

Hey Pamr7777,
I can completely understand your frustration and lack of trust with the healthcare industry but there can be many variables in regard to treatment. The first of which is the type and location of the AVM, for example if the AVM is within a limb a small AVM, less than 3cm, maybe considered a ‘wait and watch’ scenario. Where one within the brain may need intervention but this can be very much at the interpretation of the surgeon. It can also depend on which vein or artery is feeding the AVM. A rupture on a vein may be of concern, where a rupture on an artery can be life threatening, so as I say there can be many variables.
Here is a link that may give you a bit more information https://www.joeniekrofoundation.com/understanding/what-is-an-avm/

Hope it helps
Merl from the Moderator Support Team


This AVM is in my brain on the right side and it’s 23 mm. I’ve known about it for 25 yrs. however it was never monitored. I had a brain bleed October 2018. One Dr talked about embolization another discussed radiation. Radiation is not an option because of the size. Where I live the choices of a neurosurgeon that deal with AVM’s are slim.


@pamr7777 Not sure where you are or the specifics of your ATM, but certainly the size and location don’t automatically preclude you from Cyber Knife ( radiation) you might want to download this pdf These days the procedure is most often carried out by an interventional radiologist. Those guys are a little easier to find than a good neurosurgeon. I’m sure some of the experienced patients here can guide you. I’m in a small town in Montana, and interventional radiology did fine with my son (although his was in his abdomen) I’m glad you found us and welcome



There is a guide to AVM size & grading here:

If your AVM is in your dura mater, a different method is used, which often indicates “leave alone”. The other factor which indicates it may be best left alone is if it is in “eloquent” areas of the brain, in other words areas with lots of critical function, deep in the brain, and more likely to do damage trying to do surgery on it than come out with a better situation. So, you need to understand where your AVM is in your brain as to whether it is definitely better to leave alone or to have some treatment.

A lot will have changed since your first diagnosis, so what can be achieved today may not have been a viable option all those years ago.

Very best wishes,



I live in Rochester and went to Cleveland Clinic for treatment of mine. I would recommend going there, Mass General, or NYU Langone.