Has anyone else been told that this may be genetic?

My doctor has told me that vascular malformations (arterial and venous) may be genetic. So, I was wondering if anyone else has heard of this. I am really worried that I passed this on to my children, or even that I made it possible for them to pass it along.

My sister who suffers from horrific headaches like me went to her dr in Washington who told her no they are not. I also asked my dr at cornell he also told me not usually genetic…they just “happen”. Hope this helps you or puts you in a comfort zone. Peace… Mare

I have asked the same question a million times to my dr. They have all said no I couldn’t pass it on to my son. I just pray that they are right. I also questioned if any of my immediate family members needed to be tested and they said no. Hope this helps

I think the jury is still out on this one. I have heard several cases of doctors (mine included) saying that they are not genetic and that I should not be worried about passing it on. Seeing as how I have dozens of relatives, none of which has ever been known to have an AVM, it seems safe to say that it cannot be passed on. At the same time, I have heard stories from people that have had more than one person on their family with an AVM.

This seems to be right up there with the common question: “If I’ve had an AVM removed, can it come back?” Some say no, others say that it has happened to them. My personal thought on this is that more studies need to be done to figure out the cause of AVMs because I have a feeling that there may be two distinctly different types of AVMs, one of which is genetic and one that is not. Just my personal thought, and since I don’t have the biologic education to back any of this up, I won’t go any further.

Hello Jessie and Jason

Generally some deceases may be inherit, some current drs. say that people inherited an illness, I don’t think thats all possible,if they knew the cause of the illness to treat the sickness, they would not make that statment.
getting back to your question, in my situition, this might be inherited, myself and big sister are survivors, we are very greatful, but sad to say, our mom,aunt and a cousin did not make it, the surgent said it is genetic, sorry, to say this is still iffy in my mind. Four yrs. after my sergery, I realized alot of family/friends did not fully understand Brain injuries so as part of providing info./research for this, I have donated my brain to Harvard Brain Back. Too be on the safe side, I had all my kids have an MIR to make sure they did not inherited this from me,( all this is from my mom’s side of the family.) It’s taken me 6 yrs. to be normal, still working on it! reason? it was not caught on time, alot of damage was caused. Was inrolled in a 5 yr. study to determine coil versus clipping for the ruptured aneurysm. You asked an important question, we need more info. on this subject, thanks.

I’ve read online and also been told by all the neuro’s that it’s not genetic but it is hard not to worry. My youngest daughter is 27 and suffers from severe migraines on the left side of her head just as myself and it’s concerning.

I think one of the things that may get lost in translation when speaking with doctors is the difference between “genetic” and “congential.” It seems that research has determined AVMs to be “congenital,” but not neccesarily “genetic.”

For anyone that may not be familiar with the terminology, “congenital” basically means that something was present at birth. In the case of AVMs, it means that the malformation has been there all along, but the term “congenital” could be used in a stetement as broad as, “My mother is a congenital humorist,” implying that she was born with a good sense of humor. Congenital can, but does not neccessarily mean that something is passed from parents to their children.

By contrast, “genetic” means that something is biologically within the genes and is hereditary.

I ask my doctor how can this happend to my and he did say that it is genetic…I was born with this and with time got ruptured…But sometimes people die without knowing that they had and avm…Also I ask my doctor and my baby pediatrician…If my baby could have this and they said that I was born with this problem not to worry for my baby…

Hi Jessie & Jason.

AVM’s are generally a “glitch” in the system during fetal development. And in most cases they are not “inhereted” as part of a genetic issue. This is true for the vast majority of AVM’s.

However, there ARE AVM’s that are genetically linked and can be passed on. These are usually very easily identified as part of syndromes that have AVM components, like HHT. There are genetic tests that can be done to determine if you have one of these syndromes, although I don’t know that you would need them unless there was a real indication that this was a possibility for you. Chances are though…you don’t! Honestly, the possibility that you passed it to your children is so small. AVM’s are relatively rare to begin with…and the genetically linked ones are rare within the rare. I understand your concern and fear, but it’s unlikely that your kids will have to deal with this.

I would seriously question a doctor who didn’t understand this basic and generally known and accepted understanding of the condition. Is it possible he just didn’t explain it well to you when he said they “may” be genetic? It seems that he has caused you to worry for no real reason. And that is very disappointing!

Hope this helps.
Shalon

According to all good sources (my neurosurgeons, mayoclinic, etc.), AVM’s are congenital, meaning they are assumed to be formed during fetal (baby in belly) development and are not believed to be genetic. Aneurysms, however, are genetic and can run in families so there’s genetics risk there. i’m thinking the confusion might be that some people (like me) have AVM’s that create an aneurysm) or it could also be that factors that increase fetal development problems in general (ex. smoking, obesity) could be factors. The bottom line is that there’s much of your health that you can control. Obesity, unhealthy food choices, smoking, lack of moving all increase a babies development risk as do certain medications. So, I think there’s no need to worry, but definitely if pregnancy is in your future, a healthy lifestyle will help lead to a healthy pregnancy. If you’re the only one in your family (like I am), that had one, I’d be worry-free about a family issue for you. I know I am! I will say that I take 800 folic acid every day in my multi-vitamin since I’m in child-bearing age. Doesn’t hurt to be super-healthy and it helps reduce the chance of ANY child development problems!

When my son Samuel was diagonized with an AVM, his doctors asked the family to have MRI to see if anyone had in the family. If I, as his mother, would present an AVM I would have to inform my sisters to check on them and their kids. Neither my husband or Sam’s brother nor I have AVM, therefore Sam’s AVM is not genetic. He was born with it so his case is congenital.