AVM Survivors Network

Are AVM's hereditary?


Hello Survivor.I have 5 brain AVMs my daughter has one.I've been told that we are born with these buggers in us and yes it can be hereditary.The doctors say that people with multitple AVMs like myself that it is genetic.I think my mother was the carrier.I've heard many reasons about these AVMs.Born with them,head injuries,genetics.Go figure.Bottom line we got them.Hope the best for you.Sylvia


I’ve heard the majority you can’t detect before they burst anyway…


I've been told by my neurosurgeon that they are not hereditary. However, keep in mind that MRI's were not available years ago; meaning many people with a stroke may very well have had an AVM. I'm sure any physicians that are on this site may be able to address this better.


Read the whole thread, Princass.


Maybe you should tell the neurosurgeon to talk to a vascular surgeon. Not all are hereditary but mine certainly are


I have CVM's (or also known as CCM's) and recently underwent genetic testing. My bloodwork shows it is hereditary and now my daughter has a 50% chance or inheriting this. My neurosurgeon recommended me to www.angiomaalliance.com. You'll find great resources there.

God bless,


Well, in my opinion (im not a doctor) none of the vascular diseases like AVM's, aneurysm, etc. are hereditary. What could exist is a propensity due to vascular genes.
Like cancer, is not hereditary but a person who have family history, might have a higher chance to have this horrible disease.

Just my 2 cents.

Best regards


They absolutely can be detected ahead of time. My neurologist found mine in 2003 via an MRI and MRA. He had a good handle on it and I had the gamma knife 2 years later in 2005.


Dr. Rigamonti was my doctor!! He is the best!


I am playing it safe with my children. My youngest child had scans of his head done at 3 months of age when he had a hemangioma under his left eye. However, my oldest child has not. He has headaches frequently. Some of which reminds me of myself at that age. He had a dizzy spell at least once that I know of. Plus sometimes he complains of stabbing headaches that happen suddenly and are gone just as fast. Same type I have had all my life and would ask if anyone else had that happen to them and they would say "No". Plus he says his memory isn't that good. I know I had to study all the time when I was in school and as soon as I didn't have to know it anymore it would be gone from my memory. He will have an MRI done on the 17th of this month. I pray everything is fine and that something else is causing them. It will just make me feel so much better.


Does a positive bubble test mean you for sure have a lung avm?


While on this website, a post mentioned HHT. I had not heard of this before, but researched the condition. There are 4 criteria that can help diagnose the condition. If you have at least 2 it is possible you have the gene if you meet 3 it is probable. My daughter has experienced 2 - nosebleeds since she was little and brain avm. I called her hematologist to request testing. Both my father and his mother (my grandmother) died from pulmonary embolism which also can be attributed to this condition. It is worth investigating!!!!!


You have extreme reasoning to be tested for HHT and a few others that attribute to lung avms and other avms in your body


Yes, but I’m guessing they weren’t looking for an AVM, and it was by chance that they found it? I was told you can’t actively look for one if it’s symptomless. At least not the majority of them.


Whoever told you that got it wrong, mdiam. People absolutely can be screened for avms, and frequently are.


I have a cerebral AVM and my mother passed away from a large AVM. I went to the University of Philadelphia at the HHT clinic. I had the Genetic testing done and they looked over my entire body to see if I had any Talengictasias...sorry but i'm not sure how to spell that. They said that I do have most symptoms of HHT but when they checked my blood they couldn't find the Gene for HHT. They said they believe I have HHT but they just haven't found the gene for it yet. They also believe that I have a form that has the juvenile polyps because I had polyps removed when I was 20 years old and I have had several more removed since then. I believe my sister may also have HHT because she has the Talengectasias on her face, and body. She has always had severe nose bleeds since she was a young child and as she gets older she has more nose bleeds. I wish they could find out if I do have it so my children, grandchildren and my entire family could no for sure if they do have it. So far my son and sister have had MRI's to see if they have any cerebral AVMs, my sisters came back clear but my sons came back as his vessels were swollen which I don't understand what that means. I want him to have the MRI reviewed by an AVM specialist. I think that AVMs are hereditary in some family's but I also think there are some that are not.


I have been told by my Neurosurgeon they are not, however my Niece in Florida has just had her AVM removed, a year after me!!! Too much of a coincidence I say.
I have heard there is a blood test you can have that will tell you one way or another. I have no children but my Niece is getting the blood test done on her two daughters. I will let you know of the results.


I have HHT and that runs in families. However I am the only one in my family who has problems with avms.


Do you know the name of the blood test ??? Who do you go to in order to get the test run, will a Hemotologist run it? Guess I can ask mine, if I know the name of the blood test. Thanks!


I think it depends on the specifics of the avm's and where they are etc ... please check out HHT (Goole it for as much info and ask the Docs you are seeing. AVM's them self they say are not carried over to our children, but HHT is) http://www.hht.org/about-hht/ Which is hereditary :( .