Hello fellow warriors, I was wondering if AVMS are only hereditary or if they can happen at random? I had blood work done, and multiple test, granted I was pregnant so some I could not have done, how would I go about finding more information?
Hi I have read on very very very very rare occassions has it been hereditary but highly unlikely...I was told once my son was old enough to have an MRI they would test him to make sure...not looking forward to that day to be honest...God bless!
Hello,
The team that treated me said that my AVM was not hereditary but rather a birth defect.
I'll give a couple of quotes from the neurosurgeon's website and then add the link.
"An arteriovenous malformation (AVM) is a vascular abnormality between the veins and arteries of the vascular system. This is a congenital disorder (meaning one is born with them), but it is not known to be a hereditary disease."
"Researchers have not definitively concluded what the causes of AVMs are, but suspect that AVMs of the brain usually occur during fetal development and sometimes as a result of spine or brain trauma."
http://nspc.com/condition/arteriovenous-malformations-avm/
Hi Fishersmom, As a parent I too was very concerned that this horrible thing could be passed to one or all of my young boys (3 boys) , But my doctors have assured me that it is not hereditary, now you will find information via searches that some people think it is, But from my own research you just have to be concerned if you have HHT (Hereditary Hemorrhagic Telangiectasia) sometimes called OWR (Osler-Weber-Rendu) which I'm sure your doctors would have informed you about. I was deeply saddened to read about your loss on your profile page :( , And I hope that you do not blame yourself or your partner for this random horrible illness :( . Take care.
Martin
No, my AVM is not hereditary as far as I'm aware. My doctors have confirmed this. In fact I don't know anyone else who has one except the people I speak to on this website. I have 2 children and love them dearly. But I would definitely have considered not having children if I thought AVM was hereditary as I wouldn't wish this on anyone.
By the way I was once told that taking Folic Acid supplements during pregnancy helps to discourage the formation of abnormal cells. But I understand this advice wasn't given out until fairly recently.My Dr said that the congenital link is much stronger than the hereditary one. I have a twin that I worry about but the tests are expensive so he won’t do them.
Hi. Look more into HHT if you are concerned about hereditary connections for avms. I was checked and mine was a birth defect but the test is expensive. UCSF has a group you can contact for more information. Having suffered the consequences of an avm, checking for the risk my kids faced was my first concern.
My surgeon and neuro told me that they are congenital and not genetic. A mutation that happens during embryonic development. A 1% oops of the development process. I was pretty relieved since I don't ever want my son to go through the brain blowout I did.
Tina
There is one disease where the link is genetic and that is Cowdens Syndrome. I have that and also have AVMs. As Cowdens is autosomal dominant and both my children have been tested then they do not have it and my granddaughter does not have it or the AVMs. This means that had I passed it to my granddaughter's father she had a chance of acquiring the syndrome but because her father does not have it she cannot get it.
My non symptomatic AVM was discovered by accident fifteen years ago ! And in all this time I have ever ever heard AVM's are hereditary. Not by any doctor nor any written source ! Never ! I don't think they know what causes them ! But apparently there's sufficient evidence to discount them being hereditary !