Chances of being born with an AVM

Hey All,

Hope everyone is good, I am just wondering if anyone has ever been told what the % chances are of being born with an AVM. I know they are congenital and somewhat rare but does anyone have an idea?

cheers

phil

Hay Phil, I not really sure, but my doctor told me 1 in 1000 people are born with it. But if you goggle it there is heaps of this sort of information.

take care

DM

I was told you are born with an AVM!! I was also told that some people live with an AVM & never know they have it!!! They live a normal life without a bleed or any other problems & they find it by mistake,or they never know they have it at all!!Just like Donna said there is so much info out there

Hi Phil. Most websites say Brain AVMs occur in less than one percent of the general population. How goes the training??

Everything thing I have researched says 1% of the general population.

Barbara H. said:

Hi Phil. Most websites say Brain AVMs occur in less than one percent of the general population. How goes the training??

My wife just had a bleed in Mar 2011 and the Doctor said she was born with it. But if everyone is born with it, what causes it to rupture? That is scary to hear.

Hay, my prof said that it is wear and tear of the blood rushing that causes it to bleed.



Andy Lee said:

My wife just had a bleed in Mar 2011 and the Doctor said she was born with it. But if everyone is born with it, what causes it to rupture? That is scary to hear.

Our docs told us back in '2002 that having an AVM as big as my son’s was 1 in 50 million. I’ve read that it’s about 1 in 15 thousand of having one. I guess that the smaller they get the higher the chances are. I wouldn’t be surprised if half the population has one somewhere in their bodies and just don’t know it because they either cause no problems or are too small too worry about.

"Hi Phil" My doctor told me (in 2007) that 1 in every 150,000 people have an avm. If that's true, then the chances of being born with it is .0015%

If Donna-Marie's doctor is right, then it's a .1% chance

I don't think they really know. It's not like looking for an avm is part of an average physical, now is it? My dr. told me the only time avms are discoverd is when they bleed or when they start causing neurological problems. Then the avms are found because they are looking for the cause of the patients symptoms.

Either way we look at it, it's a very slim chance that a baby will be born with one. To my knowledge, they are not hereditary either.

Hello Phil,I new to the group.I do believe we are born with them.I have five.Two that have ruptured and three that haven’t yet.My daughter has a AVM.So yes to hereditary and being born with them.I’m too scared to do any exercise.Anytime I do any lifting or anything like that,I’ll bleed.I rode a bike 20 miles a day before all this.Now I just look at my bike an wish.But I do ride my horses at a walk,no more fast stuff.My saddle weighs 10 lbs.LOL.Glad you’re doing sooo good.

Hi Sylvia, Gee, after reading your message about having 5 AVM clusters made me cringe. Did you have two separate events? And how did you come out regarding to amount of side effects? I always tell my wife that she can not exert herself from now on.

With Mark my husband the dr. explained it to me before we were married that Mark's was a birth defect. he said that it was a cluster of vessels. he drew it part of it as being in an H form.

Love and God Bless

Tina

Hello Andy Lee,I hope your wife is doing well.In my case I do have to be very careful about everything.I even have to be careful how I sneeze.I try really hard not to get colds and flu’s.I’m very active in my limits.Both times my AVM’s ruptured I was over exerting.I was a welder and I lived alone 35 miles in the woods on a river.I had no help,I had to teach myself how to live life again.1990-pulling a cable on a coal barge,2001-building a barn for horses.My stress level was very high both times too.Stress can have a factor with these AVM’s too.All my side effects are many,LOL.With the 1990 rupture (1)long and short term memory loss.Had to sit a bowl in sink to tell me If had ate that day.Take bowl out to remind me to eat.To cook I got a timer to buzz to remind me I was cooking and rule was never walk outside when cooking. (2)partly blind in left eye (3)Eye hand coorditnation (4)could talk but spoke slow, had to relearn what one calls things-tree,chair etc.Play radio all the time and sing along.Read books,it would take all day to read one page and understand it.(5)still can’t do math.Was studing to be a Engineer I made “A’s” in math.(6)took four years to learn to drive a car and not have a painic attack.I’m still not for sure where I’m at sometimes when I drive,I feel very lost.Even when I drive it every day.New day every day.In 2001 only one ruptured that’s when they found I had four new ones.Three are in waiting.The effects of those I don’t read anymore cause I can’t keep focus long enough.My balance sucks now,I just walk alittle slower.No quick turns either.I take a small chair with me all the time cause can’t stand very long.I sit on the ground if I have to.Standing just does something to me.I do rest alot.My brain is very tried in the afternoons.My rest is a drug to me.I will hurt somebody to get my rest.If my brain wants rest get out of my way,I’m laying down.I some times worry about the AVM in the front of the brain rupturing.They say seiral killers have brain damage in that area.LOL.I don’t know if that one and memopause will go good together,LOL.I really try hard to be active in my limits.There can be a life after AVM ruptures.

Andy Lee said:

Hi Sylvia, Gee, after reading your message about having 5 AVM clusters made me cringe. Did you have two separate events? And how did you come out regarding to amount of side effects? I always tell my wife that she can not exert herself from now on.

HI PHIL, We are the few that were born with ours and found them in time when most of us had a bleed, if you think about it of all the people in the world our group is small but it seems like it’s a lot of us but it really isnt we are a small group compare to all the people in the world, I do believe we were all born with them congenital they just happen to bleed to let us know they were there and to make friends with others that have the same conditions for love and support. Be Blessed

Hi - born with it… this is what I ‘know’ and was told. Yes, 1% of the population is born with brain AVM but some people never know if they don’t have a bleed.
The arteries are high pressure vessles that pump the blood to low pressure, thin walled veins. The capillary bed that SHOULD exist between the A and V’s acts as a pressure buffer and will control the pressure from high (arteries) to low (veins)… AVM’s don’t have the capillary bed and therefore the pressure beats the heck out of the veins and the veins will ‘leak’ whenever it is ‘their time’. I was 39, active runner, gave birth to 2 kids and never had a problem or never knew I had an AVM until this past March when I had a hemorrhage.

Hi Phil,

I know my daugher was born with her AVM. It was misdiagnosed as a Port Wine Stain covering her scalp, ear and neck, but it was very light pink--hard to see unless she got really upset. Within 2 months, the ear became very hot and had a pulsating. She is now 7 months, and last Friday, I finally got the word after MRI and an arteriogram, that she does indeed have AVM in her ear, not a port wine stain. I have yet to meet with her doctor's to hear their "treatment plan" for her, but was told by a nurse on the phone when making her follow up appointment, to be prepared my daughter might lose her ear and need a prothetic. Desperate and devastated, I began doing my own research and found this group...but I have yet to find any posts from people who knew they were born with their AVM or found it as young as we've found my daughters...please keep me posted as to your findings. Thanks! Page, Burkley's Mom:)

I am new to this site. I was told I was born with my AVM. I exercised all the time up until the day before I went into the hospital with severe abdominal cramping. I had a liver transplant on July 9, 2008. I was one of the few cases where I had an AVM in my liver. 3 years after transplant and I have no sign of my AVMs reoccurring.

my doctor did say that my viens at the back were very thin compared to normal ones…

I was told that about 1% of the population are born with an AVM and I am one of those 1%.