Genetics? A question I hate to ask

My daughter had a bleed in May. We had no idea she had an AVM. After she was released from the hospital I asked the neurosurgeon if it was genetic, if we needed to worry about our two younger children. He said no, that it was a birth defect and that there was no reason to think that the little ones were at risk. I have seen conflicting information online. I’m always skeptical of medical information online, but I can’t help worrying. He also told us that the AVM can’t come back, but Dani is still scheduled to have angiograms (or whatever new thing is available) in 3-5 years.

Is the AVM monster dead? I feel like we’ll never be normal again.

I’m absolutely in accordance with Liam. If the AVM is completly removed, it can not regrow.
But If you have more questions you can write to Dr. Boon to the Laboratory of Human Molecular Genetics
visit here http://www.deduveinstitute.be/vikkula/

The consensus is that it is not hereditary. But peace of mind is important so if you need to, get a brain MRI of your other children to prove to yourself they don’t have an AVM. I doubt insurance will cover it since there are no symptoms, but there are ways to lower the cost if you have to pay out of pocket.

The MRI takes 30 minutes and is as non-invasive as a dentist’s appointment (as opposed to the more invasive but pinpoint accurate angiogram). I used to have an MRI every six months. Just another option to calm your nerves. As always, discuss with your neurosurgeon and tell him you know it’s not genetic but you still worry.

Ben

We were told there were two kinds of AVM, one could be genetic, the other not. Our Drs said ours wasn’t, but didn’t go into the detail that Liam offerred.

ron

Ben,

I was told only an angio could check for AVM. Dani did have an MRI while she was in the hospital, but they told me it was to map her brain for the “Brain Lab” that guided her surgery.

Ben Munoz said:

The consensus is that it is not hereditary. But peace of mind is important so if you need to, get a brain MRI of your other children to prove to yourself they don’t have an AVM. I doubt insurance will cover it since there are no symptoms, but there are ways to lower the cost if you have to pay out of pocket.

The MRI takes 30 minutes and is as non-invasive as a dentist’s appointment (as opposed to the more invasive but pinpoint accurate angiogram). I used to have an MRI every six months. Just another option to calm your nerves. As always, discuss with your neurosurgeon and tell him you know it’s not genetic but you still worry.

Ben

I really do want to know about the MRI thing? Can they see AVMs on an MRI? My doc said that they had to do an angiogram to see AVMs before rupture. Maybe I misunderstood - I was truly not functioning well during those days in the hospital.

I was told I didn’t need to worry about my children either that they wouldn’t be at risk. My Grandmother died from an AVM when my mom was a child and her brother was told he had an AVM about 2 years ago but his health is so bad now that they just wanted to wait and watch. I was also told that mine won’t come back but I read a womans story on another site and hers came back because it wasn’t completly removed.

I was told AVM’s are not hereitary, they are congenital and happen while the fetus’s brain is developing. Alos, once it’s removed it’s GONE FOR LIFE…cannot come back

That’s what I was told too, Nicole. But I also have to take my daughter back every 4 years for an angiogram. Which doesn’t make a lot of sense. Worrisome.

I was told that AVM’s were not hereditary. I’ve since found two ways that they could be.
One is HHT(hereditary), a blood disease that can create an AVM.
The other is cystic kidney disease(hereditary). I read that both of these diseases can create AVM’s.
I have a 17 year old and a 22 year old, I’m worried about them as well, so I know how you feel.
I’m very concerned that not one doctor mention these two reasons why AVMs could be hereditary.
I’m very concerned that doctors don’t seem to know where AVMs come from.

Peace,
Ameenahs

rebecca,
avms can be diagnoised by mri my first showed up on a c.t i was then sent for a mri to futher show the compexity and area of the brain it was in then after that was sent for the angio as it is the gold seal of all avm testing, but it definatley shows up on an mri…i am unsure why your poor daughter is put through a painful angio once it was removed?? i have been 1 year post op and all i was ask to have was an mri with contrst to ensure it has all been removed

I really dont’ know. The avm was removed at the end of May 2008. I don’t think the neuro is planning any tests for a few years. We go back to the neurosurgeon in July for a check up. I’m not certain what he’s checking for. Dani goes back to the neuro-opthamologist in May to check her vision. That’s the only problem she still has. Her field cut is improving, possibly gone now. She has gone through some anger/stress issues since we came home from the hospital. I don’t think that is neurological. She’s 10, so there are a lot of social and hormonal things going on for her now.

Hi Rebecca,
My little one came out of ICU following surgeries with post traumatic stress and tactile defensiveness. Fancy names I suppose for a stressful situation. The occupational therapist we are working with has started brushing him. yes, with a brush, it releases endorphins and encourages touch. Perhaps that would help Dani? Also, I agree a MRI or CT is much less intrusive than an angio.

Hi Rebecca, as far as I or my family was told, AVM’s are not genetic they are congenital but I do read stuff about the genetics part too. When I was pregnant I went to high risk due to my stroke and they did check my daughters brain with a 4d/5d ultrasound just as an “incase” but my high risk doctor also said they were not genetic eh was just checking for the hell of it. Did she have the AVM surgically removed? If so it’s gone it will not come back…I had a craniotomy so it was removed and is gone forever…I did have to go for one angiogram a year after and I was released with a good report and only have to go back if I ever need them again same with my regular neurologist. I aslo dealt with post traumatic stree syndrome for about a year after my surgery so it is possible she was going through that it taked alot out of ya. I’m so curious why they want her to follow up so much possibly b/c she 's a kid maybe…I’m not sure…

Hello Nicole,

I see that you wrote over 1.5 years ago. You are one of the only women who mention on this site that they had a stroke while pregnant. I am almost 9 weeks pregnant with my second child and was hospitalized due to my first stroke last week. There was bleeding and swelling in the posterior portion of the brain. My first child poised no problems at all.

Of course my husband and I are fearful for my health for the remainder of the pregnancy, and months after labor. If you have time, I would love to hear your story. Did you have your craniotomy after the pregnancy? How did your pregnancy go? Did you experience any other complications during the pregnancy? During what trimester was your stroke? How big was your AVM?

Thanks for any insight and time you can lend to a newbie in this stroke during pregnancy world.

Best,

Kate

Nicole J Ricci said:

Hi Rebecca, as far as I or my family was told, AVM's are not genetic they are congenital but I do read stuff about the genetics part too. When I was pregnant I went to high risk due to my stroke and they did check my daughters brain with a 4d/5d ultrasound just as an "incase" but my high risk doctor also said they were not genetic eh was just checking for the hell of it. Did she have the AVM surgically removed? If so it's gone it will not come back.........I had a craniotomy so it was removed and is gone forever.....I did have to go for one angiogram a year after and I was released with a good report and only have to go back if I ever need them again same with my regular neurologist. I aslo dealt with post traumatic stree syndrome for about a year after my surgery so it is possible she was going through that it taked alot out of ya. I'm so curious why they want her to follow up so much possibly b/c she 's a kid maybe....I'm not sure......

Two years ago, when my daughter's AVM ruptured, we were told it was gone and could never come back. Earlier this year, we were told that newer research indicates an AVM can regrow. Here's what our newest neurosurgeon explained: Any tiny bit of AVM that might remain in the body can "recruit" other arteries and veins and essentially regrow. It's already happened once for my daughter, so regrowth is definitely possible.

Now, I am in a similar position. My daughter's bleed was almost 2 years ago. I have two older children and worry a lot about their health and whether they have AVMs as well. Every neurosurgeon I ask tells me it's congenital for my youngest and that it's not something that is hereditary. I really won't feel comfortable unless my other two have angios. I know the MRI is good, but I know the angio is the gold standard.

For now, we just wait and hope/pray that my daughter's doesn't regrow again.