An actual discussion

I'm not looking for advice, I don't think. I have two kids- a 5 year old and an 18 month old. I know they say that it's unknown, unclear, unlikely that avm's are hereditary (with the exception of HHT I guess) but ugh, I just worry that they might have one. It's such a rare thing, I know, and there have been no symptoms or anything that I know of, they are still pretty young I doubt my oldest would even know how to describe something to me even with him being as well-spoken as he is (it's kind of creepy how clear he talks and understands some things). I don't think anything could get rid of the worry or paranoia or whatever you want to call it. It'll always be there like every other worry I have for them, really. I guess that's why I'm not looking for advice. Just hoping I'm not alone in the worry I guess LOL. I know it's silly, I know it's unnecessary, I know it's useless but I'm still..I'm just worried LOL. Please tell me I'm not alone!

I totally understand. My drs told me that was congenital, it’s not hereditary. But maybe if you are really worried you could request for a CT scan?

Hello kristi. You are not alone with the worry stakes. I have two grown children who have two young children each and I do try not to worry about them all. I have accepted that AVM's are not hereditary as I have done quite a lot of research on that and all tells me that they are not!

I look at it as it is very rare. If I have it then the chances are even slimmer that my kids would. I know it really has no logic but I figure the odds are on our side. Does this make since?

Also I dropped my daughter about of the car onto her head so she had a cat scan at 5 weeks and nothing showed up.

To me there are so many other things to worry about because it is so rare the chances are so slim.

Robin

I'm sorry, guys, there is some misinformation here. I am drawing on recent information about the pathogenesis of avms as well as the experiences of the 5,000 members here. Many doctors are not apprised of more recent information and continue to state emphatically that avms are not hereditary, doing an disservice to some of their patients. We should not be repeating the same mistake here. From our members alone, there is ample evidence that some families carry genes that predispose people to have avms. Some of these families have HHT, Cowden Syndrome, BRBNS, Sturge-Weber, Parkes-Weber, Ehlers Danlos, CM/AVM, or neurofibromatosis, all of which are genetic and may or may not be passed on to one's children. Other members here do not have any of these conditions, but still have several instances of avms in their family spanning multiple generations. As ksucat says, avms are rare, so this is not coincidence.

I suspect that avms are caused by any number of possible genetic sequences that have variable expression and can result in a variety of vascular effects, including varicose veins, preeclampsia, and birthmarks as well as avms. Also, many avms are quietly present but never become clinically significant.

So, to get back to kristi, should parents with an active avm worry that their children will have one as well? The best answer that I can give is to know and recognize the symptoms of avms, but not to attempt to screen or test your children for avms unless there is some evidence of one of the genetic conditions I mentioned in my first paragraph.

Kristi, you may want to write your worries down on slips of paper and put them in a box. Let the box hold on to them for you, so that you don't have to carry them around with you. It sounds silly, I know, but it may work. And, yes, sometimes, I have those worries, too.

I tend to agree with DancerMom.

Since we had two young kids (5 & 8) when Chari's AVM showed up, we were worried about the kids. Our Drs said not to worry, so we mostly didn't.

The other thing is many (most?) AVMs don't present in very young kids. I know there are some on here who do have very young kids with AVMs, but I think the preponderance of members on this site have had their AVMs show up later in life. For many women, it appears to me that they show up around age 40........... One DR didn't score points with Chari when he announced "well, you are FORTY..........."

I'd speak to your DR about your worry. Our Drs told us one kind of AVM was more prone to run in families, but ours wasn't. Sorry, I know which is which.

Hope this helps.
Ron, KS

I love your response Dancermom, as always :)
Some searching on here over a year ago brought me to the same conclusion Dancermom brought up, not every patients story or experience goes "by the book." It seems strange that for something non-hereditary, extremely rare, to 'pass' in the family with no signs of known related causes such as HHT. I'm thinking avms are more hereditary than docs think which is scary.
My aunt died of an aneurysm that busted so bad it completely destroyed her brain. Really scary. After my bleed, my cousin went back to her autopsy report for anything he might have missed then had the report "translated" to him. He asked specifically about avms and was told basically that it's possible that's what was the real cause of death but because of the amount of destruction no one will ever know, there's just nothing there to dig through, it was literally destroyed, too messy so aneurysm was listed as cause of death. She also suffered from severe migraines her entire life.
I really don't want to test or screen my kids because I'll just be feeding the paranoia and I think if I reach that point no answer will satisfy me. I'll just think the results are wrong, WE NEED MORE TESTS DONE ASAP!!! LOL. I really don't want to feed it. But I do like that box idea. If my worry gets real bad I can just bring the box to my kids Dr and yell at them "Am I so paranoid you'll do something now?" LOL, they's probably introduce me to a padded room lol

You are not alone. I have two boys, 8 and 11. My 11 year old complains with a headache off and on. I am going to ask their doctor when they go back for a check up. I had terrible headaches when I was little to the point I would throw up. It is constantly in the back of my mind. I had no idea that I had this "thing" in my head until 10/09/12 right before my 39th birthday.

Odds are that they are fine, but odds have little meaning to me since I was diagnosed and have had two bleeds. For peace of mind, why not consult with a pediatric neurosurgeon and possibly proceed with MRIs...sometimes it is hard to pursue this stuff but at least you will have peace of mind.

I had a lot of headaches when I was younger also but not at a really young age. My youngest is 19 months and he is always rubbing his head and pinching his eyes. I don't think I would have ever noticed if it weren't for my bleed and AVM. I worry that sometimes I'm looking for these "signs" and that I'm the one creating them like they don't really exist. It's hard to tell when you need to be concerned or you need to check your paranoia LOL. ...I mean he's 19 months but he's not done teething so he could maybe have some teeth still trying to cut through...Idk...

I always think the same when I consider tests...."what if the results aren't satisfying? What if they are good results and it somehow doubles my paranoia???" That sounds so much like my line of thinking I'm not sure if that'd be worse than the original paranoia or not LOL

You are so not alone... I just had a craniotomy last March to remove a Cavernous malformation from my brainstem and my 3 children each have a 50% chance of having one.... It does scare me a lot... i know however that it is already so rare that they become active and bleed like mine did so the chance of it happening to them is slim. I dont know if i want to find out and then worry about the one(s) that have one, or just not find out! If i find out... i know what to look for as far as symptoms and could seek treatment sooner...but also i would think its that everytime something is wrong or one of them is sick..or is ignorance a bliss?

Dandelionwishes, so it has been confirmed that you have familial ccm? Did you have genetic testing?

You are not alone! After my AVM ruptured in 2007, I worried about that all of the time since I have a 29 year old son. I got him to go have an MRA. (MRA can find problems with the blood vessels that may be causing reduced blood flow. With MRA, both the blood flow and the condition of the blood vessel walls can be seen. The test is often used to look at the blood vessels that go to the brain, kidneys, and legs. Information from an MRA can be saved and stored on a computer for further study. Photographs of selected views can also be made.) It helps the worry part anyway!

Also, I had a CT of my head from a fall three years prior to my AVM rupture and that CT did not see anything wrong at that time. Since I had to have had the AVM at that time, maybe a CT does not always pick up on an AVM by itself.

You know what? No it has not be confirmed that is is familial!!More than one Dr. said my kids had 50/50 chance but maybe that means 50/50 of it being hereditary? I guess i have to do more digging :))

I know exactly how you feel. I'm torn between feeling like I want to know- make sure just to quiet any worries and just not wanting to know because of the whole ignorance is bliss thing but this damn little voice in the back of my head goes, "but if there is something there, isn't choosing to be ignorant making you a bad parent, at least indirectly?" Like I want to know but then I don't want to know. Some days it drives me nuts and other days I just kind of blow it off by telling myself to pay attention. I just hope for the best, I guess? ...that really doesn't sound like me at all lol.

Ditto to everything you said!

You are not alone, I have 5 children and every time I hear "Mom' my head hurts I cringe. My children don't even know about the Avm I have. I actually took my daughter to a neuro because she says her head hurts a few times a month and has used the word headache and fuzzy. She had and MRi and all is fine the pedia neuro reassurred us it is not hereditary.

I have three children and also.worry about the chances of.one of them having an avm. I think it is natural for parents to fear their children develop any sickness or disease. Every one of you are in my prayers and thoughts, as well as your families. I have not told my Kids either. They are too young to understand. Be strong and know you.are not alone. We are all here for.each other :slight_smile: