Anyone else with young kids with AVM

My son who is 3 years old was recently diagnosed with AVM. We went into the hospital because he feel down, hit his head and was complaining about headaches. The headaches would come and go various times of the day even when he tried to sleep. The first visit said he had a concussion but since we insisted they do a CT Scan. The scan found a moderately hyperdense lesion on the left thalamus with a left ambient cistern. They discharged us and told us to follow up with pediatrician and take MRI. Spent the day looking for a place to do the MRI in a 3 year old. Took him to see the pediatrician and they sent him to children’s hospital. It was then he took sedated MRI & MRA. They found a large arteriovenous malformation in the left hemisphere centered in the left basal ganglia, posterior limb of the left internal capsule and left thalamus. They said this finding was found accidentally. He still has headaches that come and go. We are waiting for the peds nerosurgeon to review everything.

Hey Mama, just I am very sorry that your son and your family have to go thou some thing like this, he is so young.Just thought I would make sure you know there is a sub group on here for parents of kids with AVM so you will get a better answer on that page maybe.
Best of luck

Kia Kaha


No, I don't know anyone who is a kid with an AVM, except I was once. I was 8 and that was over 50 years ago. I had headaches and vision problems, and no one knew why. Then it bled and it was removed during an exploratory??? craniotomy. I am alive, and will keep you in my thoughts. Hang in there.


Thank you so much. This site is helping me so much.

Thank you