AVM Survivors Network

Moving from Why to How - an update on my adventure

Hi all - been a few weeks, thought I should check in and update you all. Last time I wrote, I was having a hard time and you all encouraged me greatly. Thank you.

So what’s changed physically for me? Very little.

Through some very unusual blessings, it looks like I’m going to be able to get hearing aids that should help me not feel so isolated and with minimal cost - because insurance doesn’t cover them.

Neurosurgeon said I could still see some brain healing with the headaches and dizziness - but he’s also pulling some strings to get me in to a neurologist to deal with what he believes are a-typical migraines caused by the trauma associated with the 30 coils and the “bunch” of super glue he put in my brain.

He also said that while originally what he did was part one of two, part two is lower down in my neck and shoulder - and so the risk of a brain bleed is less and what it is dealing with is mainly nerves in my arm and shoulder. That made me feel less like a walking and ticking time bomb, so that’s a good thing.

I read a book this week called, “When God Doesn’t Fix It.” It’s written by Laura Story - a Christian music artist whose husband had a brain tumor and then meningitis and has ended up with permanent brain damage - no short term memory at all and other significant deficits. She said in her book that she had to get to the point of no longer saying, “Why God?” And instead saying, “How God?” "How does this fit into your plan? How does this allow me to still make a difference? How does this fit into the way we thought life would go - or if it doesn’t, help us figure out the new How.

I would strongly recommend reading the book. To me, it was a paradigm shift - it helped me say, “Okay, this sucks, okay, I can’t do what I used to. But what can I do? How can I be useful? How can I adjust to my new reality and not sit and feel sorry for myself all the time?”

I’m not there yet - but I’m closer than I was.

So, physically, I’m still where I was. Emotionally, I’m moving towards a better place.



On a physical front Magnesium L-Threonate has been hugely helpful in addressing my atypical migraines and other post AVM/stroke nervous system issues, stay strong. :pray:t5:


@TJ127 Hello Tom - are you taking anything like topomax for the headaches? botox takes the edge off, the occipital blocks were the best ask about those.
It gave me 3 weeks pain free which was great-

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Angela - thanks and sorry for the delay. Neurologist said there are a “LOT” of different medications we can try - but he wanted to try one of the “oldest” ones first because it has minimal side effects and then go from there. Been on a low dose for a week - no real difference. Upped the dose last night - and will continue to up it for the next 5 weeks to see if it helps. If it doesn’t, then we’ll go to plan b.


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