AVM embolization survivor but now son has congenital issue

Just reaching out to connect with people to deal with the stress. I had an AVM successfully dealt with back in 2015. Pulsatile tinnitus symptom led to MRA which detected it and I got an embolization done. Lo and behold, 6 years later my son develops vertigo and headaches. Turns out he doesn’t have an AVM but he has cerebellar tonsilar ectoplasia. It is a congenital issue where your brain stem extends a tiny bit into your spinal column. He will be ok unless the vertigo episodes become common. I just hope they don’t.

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Bill,

We all worry about this sort of thing. My son has what appears to be a birthmark in exactly the place where I had my DAVF! So far, he has no symptoms of anything untoward and the doctors are uninterested: the doctor we saw preferred not to make a diagnosis but to keep future medical opinion open and unswayed by what we can see at the moment.

Like you, I found my DAVF because of the pulsatile tinnitus and like yours, mine was embolised.

Hoping your son’s vertigo stays relatively minor.

Very best wishes,

Richard

Bill, good to hear you AVM was successfully dealt with. I always like to hear those results! I have never heard of cerebellar tonsillar ectoplasia, and just checked with Dr. Google. There is a lot of information for sure and as per usual on the wonderful web. I certainly hope his symptoms don’t worsen as well. It is good to have the diagnosis and will be able to monitor and track symptoms.

Take Care,

John

This has been my #1 concern - bad enough I have to deal with this shit - I just “hope” my son does not

Speaking with my neuros as much as I have - they all seem to lean towards - it’s a 50/50

Neither of my parents have the issue, but come to find out my grandma did - since this is is well over 50 years back, all my parents know is that she had “something” removed from her head at the age of 30 or so - it messed her up pretty bad, effecting her vision & motor skills permanently - I’ve met her a handfuls of times before she passed of brain cancer at around 70 or so, when I was 5-6