AVM Survivors Network

Are AVM's hereditary?


AVMs can be hereditary as part of another syndrome. I have Cowdens Syndrome and have been told that I can get AVMs anywhere anytime. I have had surgery on two. At present am still recovering from last surgery which was an AVM in my right elbow. I stillo have limited feeling and strength in the lower part of the arm but i still have the arm which was the important factor. Cowdens is a familial cancer syndrome and unfortunately I can also get cancer anywhere. I have already had one lot of cancer and I know that I will get more. We are lucky in this country that we have some good resources in our state capitals.



You are lucky to live in Australia when it comes to national health. The US is backwards, and the powers that be are acting like idiots.

I am thinking you are doing well right now with the Cowden’s? It must be hard, and I wish you the best. Which parent has the same syndrome? Or maybe it has to be both?

I had one AVM when I was a kid. In the brain. Good luck.



I think my Aunt had one as well, but the doctors called it some -kind of tumor? This was before I was born in the 1940’s or so, all i know is what I’ve heard from family tales… She too was young (3o-ish) and healthy with no reason for either a tumor or rupture! From the description of a strange ‘tumor’ i am summarizing an AVM, but hers was found in a heart artery, not the brain like mine, but I suppose any artery may have an AVM?
not scientific,
just my own personal family history,


You can get a diagnosis for HHT and set up genetic testing by googling “HHT Center of Excellence,” which takes you to HHT.org and shows a listing of the 7 locations in the U.S. There are 33 centers worldwide. I have been to the Dallas location, and we just returned from meeting with the HHT pediatric affiliate in Dallas yesterday–my 3 daughters also have HHT. They were all screened for lung AVMs with the bubble test at Children’s Medical Center, which went very smoothly! I highly recommend this location. They were all free and clear of AVMs, too!!! :slight_smile:


My surgeon did an angiogram on my arm before he operated and he could see that I had small AVMs in other places. He operated on the large one because I had restricted movement in my arm. I have one under the second toe on my left foot and he said that he will monitor it because if he goes in too soon I can lose the blood flow to the toe and then have to lose the toe. If you have a good vascular surgeon he/she should check first exactly where the malformation is. With regards to the Cowdens I am used to checking all the time for unexplained lumps and bumps and when I do get one I always try to get it checked. Interesting re the nosebleeds as I have had quite a few lately and I have the small red spots as well. I will mention this when I see my vascular surgeon next. Thanks for the heads up re that.


I know you wrote this almost a year ago but I’m just now reading it. Wow this is the first time that I’ve heard about broken blood vessels in the eye. When I was pregnant with my daughter (1991) I had the same thing. I had to wear sunglasses inside at work just to hide my very scary eyes. My eyes were completely blood red where white was supposed to be. I was told it was bad orange juice at the time. Wonder if there’s any connection. I will visit the HHT site and I will get tested as well just to make sure my daughter doesnt have this. Shes a junior in college right now and like every mom, I want the best for her. Thanks every one for sharing.


my grandpa had it,i was born with it


I was told that they can be familiar.


I have been told by my doctors they are not hereditary, but they are genetic. You are born with them. Mine was in my brain. I had it removed in January 2012. They requested I donate it for genetic research, which I did. Maybe it will help someone in the future.


A lot of the debate stems from what people are told by their doctors concerning that one person's situation. Generally, for people who discover a brain AVM, their doc is right to say that it is not hereditary -- for the kind of AVM they have. There is a hereditary form, but it usually presents differently. Mostly, brain AVMs are congenital (formed in utero and present at birth), but can form as the result of severe injury.


AVM are NOT Hereditary. All the proper Dr's I have talked to its not.


Please read about HHT: http://www.sirweb.org/patients/hereditary-hemorrhagic-telanglectasia/


My Neuro told me that AVM's are congenital (improper vessel formation in the womb). Well, OK I thought. BUT there have been many cases of AVM in my family. I had an older cousin who died from an AVM. Also, my father died from an aortic aneurysm when he was 48. Now my nephew, who had some heart abnormalities when born (they are fixed!), but he also has a small aneurysm in his aorta. Dr's watch it and will fix it when it gets larger. I've also read some journal articles on this and some researchers do believe AVM's are hereditary. So, who knows, I am not sure there is a definitive answer to this question yet. I'll keep reading... Leslie


Hi, my name is Dean. I went into a 1 1/2 yr. coma after my AVM located on my brain stem busted. All your comments weas that it isn't inhereted but I was told it was.


YES, AVMs most certainly can be inherited, if you have a genetic disorder called HHT (Hereditary Hemorrhagic Telangiectasia). 1 in 5,000 people have it, but 50% of my family tree have it, since each child born to a parent with HHT have a 50/50 chance. (Actually, all 3 of my girls got it.) Roughly half of people with HHT will have an AVM--most are in the brain or lungs (that's where mine was). And there may be other hereditary conditions that cause AVMs to be more prevalent. One thing I've learned with all of this is that doctors, who I've always trusted in the highest regard, don't actually know everything. It's up to us to spread awareness. Of course I know this may not be your condition (if any), but comments like yours confuse people who may actually HAVE a hereditary condition.


Yes, but if you could simply screen your hypothetical 1 year old before an aneurism, brain abscess, or stoke happens, wouldn't you prefer that approach? If you identify it before that happens, you can fix it. Or maybe you prefer making the "most of life" and not taking any action...you just run the risk of losing someone you love--why chance it? (Actually, I hear they can test the umbilical cord of babies with parents of HHT so they don't have to be screened.) Good luck; please rembember that becoming informed may the best way to help yourself and your family. Thank goodness for the internet! :)


So was I!


From our neurosurgeon, children under 18 a simple blood test (if no symtoms) otherwise >18 or with symtoms MRI/MRA. This disease is all about defective genes and how they behave. Get a good primary physician have them order up blood work to test for AVM/CCM then get an appointment with a Genetic Specialist to go over results.

Our family came into this disease through a initial ER visit for our daughter. She was 28 yrs old at the time and having severe headaches (like her father), and seizures..She eventually was seen at OHSU/Portland Oregon by Dr. Johhnny Delashaw, head of neurosurgery who brought us all in and order MRI..He opened Pandora Box. Her father had multiples on the brain and brain stem, her younger brother and two on the temporal lobe, oldest brother did not have any nor did I, but she had 2.5 cm that was bleeding on her temporal lobe and another one above it. He planned surgery immediately..Our journey started to connect how this disease has been in our family 3 generations. Our fourth generation is being tested this summer through blood test to see who is carrying the defective gene.They are all <18 yrs old and no symtoms yet. Blood test is important as AVM and CCM can be just that person or affect up to 50% if off spring. Good Luck and Blessings to you in your journey. Barbara/Dave Warren Oregon


When I was first diagnosed in 1986, I read up on AVM & turned myself into an expert. I was in nursing school at the time & had all of my doctors explain it to me. My neurologist was one of the early doctors who is an expert & wrote many published papers on AVM, in the 60's, he was ahead of his time, as most of what is known didn't come about until the 1990's. My mother & her brother both had "strawberry" birth marks which are AVM's just under the skin. Yes, I do believe that they are hereditary.


there are genetic conditions that are associated with AVM's the most common is Osler Weber Rendu syndrome, the only that that you can really do to find out if yours is genetic is to have genetic testing done.