A question

I wonder how many of us have a related genetic problem that have caused the avm’s. I have Cowdens syndrome and the avm’s are related to that…thanks Margaret P

It's my understanding that we are born with the avms.   I oftened wondered if the doctors are right about that.   I don't know.  Hmm.?

docs suspect that one was removed from my l thigh at age 14…no one ever followed up…so now they are from the top of my thigh to the bottom of my knee…everywhere including 2 in my foot…was diagnosed with cowdens in 2002

Hi Margaret. Send a message to Christine Bolender here on this site. I cannot find her initial blog. She complied a lot of info on families that have AVMs. They run wild in her family. Both my first cousin and I had one. Ben is right…I was told that Avms were formed in the first trimester of birth. If true…then why do I keep reading on this site from concerned parents that their child’s AVM grew back.

I have Ehlers Danlos Syndrome and some types of this can cause ruptures and things, although the geneticsts we saw a few weeks ago feel that the incidences of AVM’s with EDS are very rare and not related. But when they looked at me they saw my tiny little pin prick spots I have and mentioned Hereditary hemorrhagic telangiectasia (HHT) and said they would refer me to a fellow geneticist who specialises in this.

This website I found fascinating...


I was told I was born with my AVM I have no othere genetic problems and nobody else in my family has any real issues.I wish I could be more help.

A very thought provoking statement and question . I never had cause to consult with a geneticist but as far as I am aware there are no genetic problems that caused my avm and I am the only one I am aware of to have had one .

My daughter has DVA with a CCM and AVM. I was told it was a malformation that began at the very first stages of development. Nobody else in our family has had an AVM that we are aware of.

I have Cowdens and have had two AVMS that have been removed surgically and still have a third one in a foot. Dr is monitoring this. He said that he does not want to touch it until it gets to the point where I can’t walk on it. Reason for this is that if removed then I could lose the blood flow to the toe and then lose the toe so he is trying to keep it as long as possible. Dr was great. Did not rush in.