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AVM Survivors Network

AVM's Hereditary?

My wife’s neurosurgeon and crew of doctors explained to us that AVM’s can be hereditary. They told her that hers was most likely caused by genetics. Since her AVM I have done tons of research on AVM’s and have read that they can be hereditary. However, after reading a lot of people’s comments I see that some people have been told by their doctors that they can be hereditary while others have been told that they cannot. We don’t have any children, but I’m sure that survivors with children would be interested. Just wondering what everyone’s been told.

Hi JBuddle. You might find these links interesting...

http://hht.org/about-hht/

http://www.avmsurvivors.org/main/search/search?q=hht

http://www.avmsurvivors.org/forum/topics/are-avms-hereditary

BTW...I was told it does not run in families. I had one in my brain...my first cousin had one in his lung...hmmmm.

Thank you Barbara for all that information. It was very helpful especially the one aboout hht. My wife just got home from work and I was asking her questions about what her doctors spoke to her about. I certainly had an oversight. She told me that her doctors explained it to her that they believe there might be a possibility of heredity playing a role in some cases, but not enough is known to say definitively. They said hers was congenital, not genetics. This web-site has already helped clear up a misconception I’ve had for almost 2 years now.

Barbara H. said:

Hi JBuddle. You might find these links interesting...

http://hht.org/about-hht/

http://www.avmsurvivors.org/main/search/search?q=hht

http://www.avmsurvivors.org/forum/topics/are-avms-hereditary

BTW...I was told it does not run in families. I had one in my brain...my first cousin had one in his lung...hmmmm.

Half the doctors I’ve seen have told me not hereditary and the other half told me probably hereditary. In 1974 at the age of 37 my father passed away from a brain bleed. Then my uncle (dad’s brother) passed away from a brain bleed too. THEN their 1st cousin passed away too. Another brain bleed. All young all male. I’m the 1st to survive. Thank God and the great medical technology we have today. grace

Grace,

I'm sorry to hear that you've had those losses in your family, especially due to such similar circumstances. But I'm elated to know that you survived! Thank you for your input. We don't plan on having children, so the question of whether or not AVM's are hereditary doesn't really effect us, but I like being educated on what this monster is all about.

grace said:

Half the doctors I've seen have told me not hereditary and the other half told me probably hereditary. In 1974 at the age of 37 my father passed away from a brain bleed. Then my uncle (dad's brother) passed away from a brain bleed too. THEN their 1st cousin passed away too. Another brain bleed. All young all male. I'm the 1st to survive. Thank God and the great medical technology we have today. grace

I just received a call on Friday asking for me to book an appointment for HHT screening. Up until now I believed it was congenital.

I was told that it wasn’t. But I really would like to know because my gradfather passed from an aneurism. But my doctors say I was born with it.

Interesting my Grandfather passed from a bleed he was in his 60’s. I’m still being treated but no bad problems anymore.



grace said:

Half the doctors I've seen have told me not hereditary and the other half told me probably hereditary. In 1974 at the age of 37 my father passed away from a brain bleed. Then my uncle (dad's brother) passed away from a brain bleed too. THEN their 1st cousin passed away too. Another brain bleed. All young all male. I'm the 1st to survive. Thank God and the great medical technology we have today. grace

When I was first told about my avm in june of 06 the doctor told me that it was suspected to be formed in 2 ways, one hereditary and the other from an old injury to the head as a small child or during puberty. which would make sense as my brother and sister were fighting over firelogs when i was a toddler and i ended up getting hit in the head in the process and never got the injury checked out. but its growth was definitely during puberty.

Stephanie…did you request HHT testing or did a doctor recommend it for you? I’ve been wantin to have myself tested but was told that I wouldn’t been a candidate because I don’t have any other symptoms, but my daughter has nose bleeds so I was concerned.



Stephanie said:

I just received a call on Friday asking for me to book an appointment for HHT screening. Up until now I believed it was congenital.

Hi! My whole family was recomended to get tested for HHT as my husband had very bad nose bleeds as a child. Everyone was ‘screened’ for any symptoms and my husband was found as ‘probable’ HHT and was told to get a cat scan of his brain and lungs. (This all happened about 5 yrs ago-my daughter was diagnosed with her avm 8 yrs ago) The scan showed a few avm’s in his lungs so he was scheduled for an embolization but thankfully, after doing the angiogram…the avm’s were really NOT there! They said they probably were just scar tissue that appeared on the cat scan from back in the day when he smoked as a teenager. My son also had a brain scan…but all came back fine…Thank God! Then my husband did the blood test which also showed him NOT to be HHT positive. Apparently HHT is a blood vessel disorder that can cause AVM’s therefore, if you have any concerns, I would definately talk to a doc about getting your family screened.

"Well" , JBuddle. Mark's Avm was in 1980. we married in 1990 we did not have children and wanted children. so I know where your coming from. I did not look into it to deep myself. but we did discuss it with doctors and they told us no. now years down the road we hear yes and we here no. so which is it.

Mark and I do have a son he is 17 will be 18 in 5 months. he has had no problems nor do I really know what is going on in his brain. but his eye doctor is able to see if there is anything going on like pressure. eye doctors are able to see a lot of what is going on with our systems through the eyes.

JBuddle as your going through this if you have any questions don't hesitate to contact us. Mark's was in the cerebral. there is so much to tell and stories of what we've been through. I can not imagine the daily frustrations that Mark goes through. But as a wife I go through a frustration , just a different frustration, our son goes through a frustration different from his dad's and different from mine. you can't escape it , it's going to happen. your life has changed and there are going to be decisions you both will have to make in order to get your life on a balance which is going to take some time. a lot of patience from you and sometimes you will not understand why they do the things they do. this is where you will find out who your friends are. your family and friends will not have a clue of why you can't do this and why you can't stay out late. they won't understand because they cannot see the struggles that avm survivors go through each and everyday. you don't until you are with that person day in and day out.

you are going to see your wife get mad , frustrated , depressed, going through a lot of emotions. her body and mind has been turned upside down and now she has to live in a different way. your world has completely changed too. My husband and I have been married 19 years we have gone through a lot of emotions with this. we have a strong marriage I will never leave him. like I said when ever you want to vent, have a question, don't understand or she doesn't understand my husband can help her. I can help you through your frustrations.

Love and God Bless

Mark and Tina

Baylor College of Medicine Neurosurgeon that did my surgery calls it Congenital. Means you were born with it.

Not necessarily an heredity thing. I have had no one in generations of my family with it.

JBuddle,

When I was first diagnosed with a Cavernous Malformation that had lead to seizures, it was as if the family pandora's box had been more than opened. It burst open after 50 years of suppression.

Here's the story:

My grandfather on my father's side died before I was born. He was put on dilantin, refused to stay on his meds and was institutionalized back in the 50's. It is here that the story finally begins to unravel. I never knew that my grandfather had seizures. My dad's description of his father's his seizures were identical to mine. My dad still has a hard time talking about it. Being institutionalized had such a stigma to it. Additionally, all of his father's erratic behavior was someting he could not handle.

My grandmother on my mother's side once wrecked her car. The doctor ordered a CT scan which picked up a spot that the doctor guessed was an AVM. Since she was in her 80's he did not follow up in any manner.

Is it hereditary or is this just a coincidence? In my case, I would guess it is hereditary. I'm praying my kids do not have to go through this.

George

Hi JBuddle,

Like frgeo, I too have cavernous malformations (in the same vascular malformation family as AVM's) and mine are considered congenital/hereditary.

My (maternal) grandfather died of a brain hemorrhage way back when, so that's where we assume mine came from.

My mom, aunt & sister have been genetically tested and were neg. for carrying the gene. I've wanted my adult son to be tested, but he declined.

Patti

Hello JBuddle,I have a daughter with a AVM.I have five AVM’s myself.My Dr. told me that when someone like me ,with many AVM’s the children most likely will have AVM’s too.I really think my mother had them too without knowing.My other daughter is fine.I also beleive our blood vessels have alot to do with our AVM’s.It seems our vessels are smaller than most.

I was told by my neurosurgeon that avms are congenital and not hereditary but genetics play a role. do i know what that means? absolutely not.But being that i was 13 weeks preg when my avm hemmorhaged, i asked as many questions as i could about it being hereditary and did as much research as i could without causing another stroke from fear. I decided that with avms it is all theories and drs dont offer much in the way of a straight answer. I opted for the craniotomy after 2 embolizations. I’m now 26 weeks preg, have hemi paralysis from the stroke and cant remember my own due date. I have a son and with this one on the way, i worry all the time about it being hereditary. MY aunt passed of an anuerysm a few years ago. She was asleep when it hapened and it was so severe that they couldnt find the aneurysms exact location in her brain. That is the only person in my fam that has had anything brain related injur or kill them.

The nuerosugeon asked a few questions about unexplained death, nose bleed, family history of seizures etc. We could answer yes to many for we have been referred on. I received a call last week that still haven’t returned… Sigh I’m sure how much more I can handle at the moment.

Trish said:

Stephanie…did you request HHT testing or did a doctor recommend it for you? I’ve been wantin to have myself tested but was told that I wouldn’t been a candidate because I don’t have any other symptoms, but my daughter has nose bleeds so I was concerned.


Stephanie said:
I just received a call on Friday asking for me to book an appointment for HHT screening. Up until now I believed it was congenital.

My husband's avm was developed while his mother carried him in the womb. the dr. said his was a birth defect. his was formed in a cluster of veins is the way the dr. explained it to me. My wonderful mother-in-law , that's what she was a wonderful woman. suggested that before saying yes to my husband now to have a visit with his doctor to get a heads up of how my life would be with an avm survivor. that's how the dr. explained it to me.

Love and God Bless

Tina

Peter R Moretine said:

When I was first told about my avm in june of 06 the doctor told me that it was suspected to be formed in 2 ways, one hereditary and the other from an old injury to the head as a small child or during puberty. which would make sense as my brother and sister were fighting over firelogs when i was a toddler and i ended up getting hit in the head in the process and never got the injury checked out. but its growth was definitely during puberty.

My son's last eye check up I had his dr. to look for anything going on. They are able to see things like that so when you see you eye dr. just mention it they can see a signs of different things going on with our bodies.

Love and God Bless

Tina