Quantcast

AVM Survivors Network

Do any of you have a child or family member that had/has an AVM in addition to yourself? Did any family members have scans that ruled it out?

Has anyone had a child or family member who also had an AVM? Have you had family members scanned after finding your AVM? Any info either way would be helpful.
I am scared to death that my kids will have this.
I had an AVM and 2 aneurysms removed in 06. My oldest son (9) went in for an MRI/MRA yesterday. We are waiting for results after today’s holiday. As they say, he is my “clone’”. Not the time I want him to follow in my footsteps. I go in again this week for a MRI/MRA because, in addition too my son’s symptoms, mine have all come back again. I have been told AVM’s are not hereditary but I haven’t found any studies out there that support it either way. The only person with an AVM that I have met personally, had a mother who also had an AVM.

Hi Samantha, Sorry to be the bearer of bad news but AVM’s can be hereditary. I have an 11 year old daughter whom has a facial avm. We have tested positive for the RASA1 gene wish causes cm/avm. I have cm’s and my daughter got avm. I have 7 brothers and sisters and we all have children 5 of my siblings have avm’s also. It is however very very uncommon. I have found more families with un hereditary avm’s than with them. I wish you all of the best of luck on your journey but a mother can never be to safe. I hope this helps. Sherri

So far we have not tested anyone else,but the same question plaques me too…I even alsked the dr this when we first found out about all of this.He didnt think to seem to think it was going to show up in anyone else…BUT alas we seem to beat the odds at all the bad stuff…AVM’s are rare too…I have known so many with brain tumors,though the scans can be expensive I think it is worth a peace of mind for everyone…
I do have a friend who’s sister and child had brain avms as well as her…

Would think this would be a great site to strart a study from don’t you???

Best to you!!!

Hello Samantha. I hope your sons results are positively “negative” and all is well.
Coincidently my middle daughter (my “clone” ) recently had an mri because she was suffering weeks of head pain, on and off “odd sensation” i.e. tingling, numbness in face and hand, as well as difficulty in feeling sensation in her hands. When leaving our office she felt strange as she entered her vehicle and could not “feel” the key she put into ignition nor summon the control/strength to turn the key. I was scared . MRI read “all clear”, thank God !!!
Yes the hospital was made aware of my avm and were on the “look-out” for anything and everything. I have never found or been directed to a definitive study on congenital or hereditary. For what it is worth, a friend of our family has avm. His children and grand-children have had no issues and they HAVE been scanned.
You and yours are in my prayers. Praying for the best result for you and your son. Breath Samantha…

Of all the “odd” items found in this brain the only one they suggested to have siblings checked for was the anni. None have & I don’t blame them. Some people die & it’s only found in the autopsy. Paranoid people can go insane. :slight_smile:

There are types of AVM’s that can be hereditary. As Sherri stated- the RASA1 gene is a culprit for many. Also, the following do/could have an AVM component and are known to be hereditary-

hereditary hemorrhagic telangiectasia (Osler-Weber-Rendu disease)
Sturge-Weber syndrome
Klippel-Trenaunay syndrome
Parkes-Weber syndrome
Wyburn-Mason syndrome

BUT for the majority of people suffering with AVM’s it really IS just a glitch in the formation of the system during fetal development. Statistically the odds are very low that you would have another family member with this, but it obviously is a possibility and “someone” has to be unlucky enough to have it happen :frowning:

It can’t hurt to have family members checked out, especially those who are exhibiting symptoms like your son. If you choose to have others checked as just a precaution, you may not get your insurance to cover it.

I hope that your son’s results come back negative!
Shalon

I think we all worry about this. My daughters AVM made me wonder about all the headaches I had as a teen and the single migraine(?) I experienced a few years ago. I have two younger children, but the neurosurgeon said that they do not need to be tested. I believe him, and I understand that some AVMs are genetic and most are not. But I’m a mom and I worry. I also wonder about the need to take Dani back for checks each year and the angiogram (or whatever technology is available) that she will have in 3-5 years. If the AVM was removed, why do we need to recheck? Can they reform?

when my son was diagnosed with a spinal avm, we asked if i was hereditary as we have 3 other younger children but were told it was not. i hope they are right because i dont think any of us could cope with this again. i am even more worried now having read your post. i may call our dr tomorrow and ask his advice. i hope you and your son are doing well.

My neuro said it was not hereditary, it was something that happened in the womb. I choose to believe him as i couldn’t cope if it was something I passed onto my son. Also the family had never heard of avm till me.

Thanks for all the info. I found it to be very helpful.
No AVM detected in the MRI/MRA for my 9 year old son–exhale. I am sure that I will have my two younger children looked at in the future if any related symptoms occur–but for now it is just me. What a relief!!!

I have an aunt who also had a confirmed AVM. She has had the surgery and had her’s suscessfully removed.

I have had my other son tested as we were also told that hydrosephauls isn’t hereditary and my exhusband and son both have it. I feel that if it puts you at ease have them tested!!! if anything just to put yourself at ease. I have gone broke for my children and will do it again if it helps me know that they are safe and fine.

no i’m not a hypocondriac I just have a hard time believing that they are or are not hereditary when they really don’t know much about them. But I also do agree that they can be a genetic fluck when they are developing as a fetus which was what I was origionally told. I had my other son tested for 1. comfort 2. his head was extremely large like his brothers wich was one of the signs of the problem. Fortunately for us. He checked out just fine.

My daughter (the one with the AVM) complained of headaches from time to time starting at about age 5. She also ran into things and fell a lot. I always described her as reckless because she was coordinated and athletic, yet she was always falling or simply walking into walls. It turns out that her AVM was in her right occipital lobe. She was experiencing visual disturbances that caused her falls. She never knew, we never knew. Although we had Dani to the doctor about the headaches a couple times they never suggested any tests. We thought she was stressed or dehydrated since it began when she started school. I don’t blame the pediatrician for missing this, but we will test the two younger children if they show anything that might possibly be a symptom of an AVM. I’d rather foot the bill for an MRI and be able to sleep at night.

Continuing with Shalon and Sherris post…I have Cowdene Syndrome, which means my Pten gene in mutated (the tumor suppressor gene) and this syndrome can cause it and is hereditary as well.

The question as to whether or not my children would get it, will I choose to have them plagues me and for that I will never have kids. I wouldn’t be able to live with myself had I passed this on to my children!

Christine

Through research a few years ago I found that the genetic disorder called HHT (http://www.hht.org/about-hht/) can cause AVM’s scared the daylights out of me . The thought that Jaclyn’s AVM could have been inherited either from myself or my husband was frightening . We visited a HHT specialist center in Philadelphia in I believe 2004. All of us were screened and my husband turned out to be the ‘symptomatic’ one out of the 4 of us. His big symptom was severe nose bleeds as a child and up until this day . They also looked up his nose and at his fingertips and recomened that his lungs and brain be scanned as a precaution . The brain scan was fine …THANK GOD but his CAT scan on his lungs showed 3 nodules that appeared to be micro AVMS! Holy crap …talk about stressed out ! The thought that my husband had silent AVM’s and the possibilty that my son could also have the gene was frightening ! So …my husband went in for his procedure to get his AVM’s sealed off and as it turns out …the AVM’s were GONE ! Either they sealed off on thier own or it was just scar tissue from when he smoked as a teenager . BIG RELIEF ! OK …now my son …We were all a nervous reck about his CAT scan but really felt it was necessary and not to take the chance that we would be going through the same issues with him as we are with my daughter . Some people say sometimes it’s better NOT to know …but being a parent …we couldn’t live with it if he would ever experience a bleed ! There is also a genetic blood test that can be done . I think at the time my husband had it done, it wasn’t deemed as 100% but now I think it is …so in my opinion…you have made the right choice to have your son’s MRI done definately! The waiting game is tough but you know that if the tech found something serious in there …they would have called you by now. Take a deep breathe and hang in there until you get the final results. Wish you lots of luck !

I asked the same question to several different doctors and all of them said it is not hereditary. They said there is a condition that is hereditary called HHT, which can cause you to have an AVM, but there are other things that go with it. My concern was that I’m adopted and don’t know my medical background, but they still insisted the Andrew’s was not inhereited. I spoke to someone at WashU in St. Louis and from the info I gave them they did not feel that Andy had HHT. Hope this helps.

I had an AVM removed in 1986 and the doctors told me it was not hereditary. I am currently in the childrens hospital with my 5 year old daughter who was diagnosed with 4 AVMs. I am finding hard to live with myself right now watching her suffer through this. I also have 4 other children who will be getting tested soon. Please do not believe that AVMs are not inherited. My neuros are excellent and have seen many AVMs and they all say they have seen this disorder run in families.

My aunt (mother’s sister) also had an AVM that bled, like mine. We are both involved in a case study that UCSF is doing. Perhaps they can find something that will help make this a little clearer. So what is the consensus among the group? Should I be tested for the RASA1 gene and then if I test positive should I have my kids checked? I know I was told that my AVM was not hereditary, but how would they know that?

So sorry to hear about your daughter. I was sitting at my son’s ball game trying to savor the moment with the beautiful day when your email popped up on my phone. My husband and I sunk in our chairs and all the feelings came rushing back. Your story is our biggest fear and our last 3 years haven’t been the easiest.
We did have one child tested and he showed no signs. We haven’t had the younger two children scanned, but are waiting for some minor sign and then I will push for scans–then maybe insurance and my Doctor will refer and pay for it? Any suggestions how to get them covered with no headache or signs? What is the test to see if we carry the gene (blood work??)
I will continue to pray for your daughter and your family–It sure isn’t easy!! We apppreciated the remainder of our day that much more after your note!!

I’m sorry to upset you…it is very stressful I know. Just be strong and keep a close eye on your children. If you feel very strongly that they may have it I would tell the doctor whatever it takes to get them checked out.
My daughter was visited by a geneticist yesterday. She had bloodwork done to check for HHT but we are told it will take a few months. For those who’s AVM’s run in families, with HHT the AVMs can be found on the spine, lungs and liver. Alexis had a chest angio yesterday and thank God it was negative for additional AVMs.
I have demanded that the remaining children be tested. It is very difficult and is going to take much more time than I would like to satisfy the bureaucracy but it is going to be done. I will be back to post the results. The geneticist said it was a 50/50 chance.

S. said:

So sorry to hear about your daughter. I was sitting at my son’s ball game trying to savor the moment with the beautiful day when your email popped up on my phone. My husband and I sunk in our chairs and all the feelings came rushing back. Your story is our biggest fear and our last 3 years haven’t been the easiest.
We did have one child tested and he showed no signs. We haven’t had the younger two children scanned, but are waiting for some minor sign and then I will push for scans–then maybe insurance and my Doctor will refer and pay for it? Any suggestions how to get them covered with no headache or signs? What is the test to see if we carry the gene (blood work??)
I will continue to pray for your daughter and your family–It sure isn’t easy!! We apppreciated the remainder of our day that much more after your note!!