12-yr old Daughter with right frontal lobe AVM

Hello, everyone. I’m grateful to have found this community. I’m finding a lot of valuable perspectives and experiences to help inform our AVM journey. So, with a somber heart and a lot of gratitude, thank you for sharing and being here.

In late 2019, my then 10-yr old daughter started having frequent headaches, including migraines. Her pediatrician referred her for an MRI. The next day, I was called at work by a local neurosurgeon’s office and told to immediately bring my daughter to the hospital because she needed surgery. Well, that was a mess. At the time, my daughter was in school and when I arrived to pick her up, they were having an unplanned fire alarm and all the kids were outside. I was a coming to pieces in real time, in front of an entire school of children. So that’s me.

The neurosurgeon was concerned that my daughter’s AVM was rupturing, but it turned out not to be the case. My daughter was diagnosed with a large, “diffuse” AVM in her right frontal lobe. Almost immediately the Covid pandemic was upon us and the stress of that served as a peculiar kind of distraction from the diagnosis. She’s now 12. She’s had a few MRIs/MRAs and a cerebral angiogram. We’ve obtained opinions from Barrow, Boston Children’s, Mass General and Yale hospitals. My daughter has relatively mild symptoms so we’re “watchfully waiting” the AVM, for now. She has intermittent numbness in her fingers, occasional headaches (few, if any, migraines, oddly), but recently started feeling lightheaded upon standing. I’m constantly mindful of the risks of putting off treatment while also being aware that treatment comes with its own risks. She is getting regular MRIs and the AVM appears stable. So that’s her.

And that’s where we are. If you can indulge me, my first question is: is anyone aware of any specific support groups or organizations for children and teens where kids can connect with other kids familiar with AVMs?

Also, I’m curious to know what your go-to resources for ongoing research on AVM treatment are: medical journals, legitimate websites, etc? I find that many useful things are behind expensive paywalls.

I’ll start with those as my first of what will likely be many questions for this audience. Thanks!



I speak for all of us when I say we are glad you found us too!

I’m not sure what websites are legitimate, but I can help with support! I’m 18 years old, my AVM ruptured on June 6th of this year. So, I’m taking it day by day.

I’d be more than happy to offer you support or your daughter to maybe find some groups we can talk to with teens/young adults.

Thank You & Welcome!

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I’m not very widely read, so I can’t answer your questions other than this site is open to anyone over the age of 13 (and our moderation policy is that language used should be suitable for above about 12). I guess the issue with younger people is that of consent and legal requirements for the age of young people accessing websites. I’d like to think we are one of the safest places on the internet, though.

We do have a handful of people in their teens (though I haven’t created a group for them yet) a bunch of parents and carers (and you’ve found the group!) and a lot more people who were a similar age to your daughter when they had their diagnosis.

I know the US members here use a number of reference sites. Each of the hospitals / institutions you’ve mentioned are top notch, too. I’m sure others will pitch in with some favourite references, though they may be paywalled. In general, it seems you’re doing the same as most in the US which is to get a selection of opinions on whether surgery is appropriate and/or what approach is best. I know we have people here with diffuse AVMs but I’ve not seen enough recent conversation to say I feel I know anything about them or who might help you.

Do use the search magnifying glass but beware of conversations earlier than (say) 2017 or 2016. We moved “platforms” in 2016 and the difference in how the website works was enough to lose a good few correspondents along the way.

I love your description of melting away in front of the school. If it’s any consolation, many of us have had a similar crumbling. I know I was shaken completely as I got my formal diagnosis.



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Hi👋 !
Your daughter sounds very similar to my 13 year old daughter!
Our daughter’s AVM was found in utero.
She was operated on at Barrows when she was 4 months old.
At 6 during a routine MRI they saw that the AVM had returned, only this time it was too diffused to treat. She’s been under observation since then with MRI/MRA/angiogram/EEG
Last week she had an angiogram because over the past few years she has started to be symptomatic (headache, hemiparesis, seizures)
And they finally feel that the time has come to treat.
Her AVM is located in between the right parietal lobe and the frontal lobe.
Wishing your daughter much health and you the inner wearwithall to be there for her during this time.


From your other posts, it sounds like you had the right people in the right place at the right time when your AVM ruptured in June. And you had great medical care too if you were able to get your AVM treated during the angiogram. That sounds like nearly the best outcome in the world of AVMs! Be well!

Thanks for the warm welcome and for all that you do for the community. I like to think of the connections we make here as individual threads that can be used to weave a rope to grab hold of when needed. Knowing we aren’t alone helps a lot.

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An AVM found in utero is so scary! I had plenty of ultrasounds while I was pregnant because I was a high-risk pregnancy. I wonder if it’s possible to go back and have those reviewed again for the AVM. If these are present at birth as the medical profession says, then I think they would have seen something. It doesn’t change anything, but I’m a curious person by nature. Food for thought.

I had all the standard checks during my pregnancy. Nothing was seen until 2 weeks before my due date and that’s was purely by Gds will. There was no reason for my obgyn to check the brain at that stage. She just did. And thankfully so

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I couldn’t be more thankful that this happened when I was at school during my graduation. They were already people who could help me, like EMT’s.

You’re strong for waiting, and your daughter too, keep hanging in there. All the best wishes!

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I’ve used the analogy with my parents that while neither of them is very strong, I see them lean upon each other and in that way they are stronger than trying to stand alone. I think it works here in the same way as any good marriage, that we can take it in turn to support each other and be stronger overall.