Who to believe?

Ok so my doctors have told me that I have had my brain avm since I was born and that it is just something that happens and has nothing to do with genetics. But i have been reading about so many people who have avms and their daughters also have them or their grandmother had one. SO is it genetic or not??? I have a 2 year old daughter and need to know if I also need to have her checked out sometime in her life for an avm

Also my doctors have told me that an avm can not come back unless they miss some of it but again I have been reading about peoples avms coming back. I am so scared.So please anyone who knows anything about either of these questions help!

Hi Britney,

There IS a lot of conflicting info out there, depending on who you ask. Here's what we were told and understand, but others could have heard other things which might be just as valid.

Since we have 2 kids, we were worried about the possibility of them having an AVM. We were told that "our kind" was not genetic, but some are. (who knows?)

The preponderance of info I've read on this site seems to indicate that AVMs OTHER than in the brain, can and often do recur or show up in other places. Our neuro also said that adults that have Brain AVMs successfully treated need not worry about recurrence, but some on here have had them recur. Younger people with treated brain AVMs often have to have followup ten or so yrs later to check.

I doubt that you get a definitive answer; your best bet is to rely on what your AVM Dr tells you, assuming he's treated hundreds or thousands.

I know it's frustrating, but such is the nature of the beast.

Ron, KS

As far as I know, AVMs form at the fetal stage and scientists do not believe that they are hereditary. "AVMs may be caused by a rupture or clotting of a blood vessel during fetal development. It is usually not associated with any other problems at birth." (Columbia University). Because AVMs are formed during fetal development, once obliterated it does not "come back". So if the doctors told you your AVM is obliterated, you can now live in peace. In regards to your daughter, it would be wise to consult with your doctor, but chances are really high that she does not have an avm like us.

Hi Britney. Most AVMs are not hereditary unless you have the HHT gene…
If no one else in your family has had a problem then you probably do not have it. There have been identical twins on here…one has an AVM and the other does not.
Also, if you have multiple AVMs throughout your body then chances are you have the gene. If you had your AVM removed as an adult and had a follow-up angio showing no residual AVM…you should be fine.

I've picked up the same info as Ron--that brain AVMs tend NOT to be hereditary, and that they only grow back if a scrap was left behind or if the brain was still developing at the time of the treatment (for children).

To set your mind at ease about whether it will grow back, please make sure you're getting all the follow-up imaging that your doctors want; an MRI scan doesn't involve any radiation and it gives the clearest picture you can get without an angiogram, so those are the images to trust. Then make sure your doctor is qualified to assess the images; if s/he hasn't treated a lot of AVMs, you can consider sending your entire set of scans to another doctor for comparison and for confirmation that the job is done.

Hi Britney,

This is my understanding of AVMs, from what I've been told by my neurosurgeons and neurologists, and from what I have gathered from reading about people's experiences here:

From the little that is known about AVM it is believed that most of them are congenital. Some AVMs can occur after trauma. Unless the HHT gene is present (as Barbara also mentioned) AVM is not thought to be hereditary. Even though a person's AVM may not be hereditary it doesn't mean another person in the family doesn't have AVM, and still the HHT gene may not be present.

During surgery or embolization for AVM it can very much appear - from angiogram and MRI/MRA imaging - that the AVM has been completely removed or obliterated. However, if even the smallest number of cells remain - few enough to not be detected by imaging - an AVM can in fact grow back.

My spinal cord AVM was 'obliterated' by embolization and there was absolutely no sign of it for about 3 years, until a year ago in September when it was discovered it had grown back. My take on this is that not many of them do grow back, but it does happen.