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AVM Survivors Network

Just an update

It’s been a little over two years since my diagnosis, embolisms, and craniotomy. I’ve been doing amazingly well…my hair grew back except where the scar is. To look at me you’d never know I had brain surgery.

I had the ‘chasing lights’ optically a lot before my surgery (the AVM making itself known but thought to be migraines without pain) and it vanished afterward for over a year. I now have the occasional ‘chasing lights’ when my bp is up a bit, neurologist speculated it might be seizures. Tested for that but no, it isn’t. Only thing we can figure is it must be from scar tissue where my AVM was removed since it was on the surface of my visual cortex behind my right ear. The whooshing I heard after surgery lasted about eight months, now it’s gone and hasn’t come back. I returned to my job immediately after my surgery (as a crossing guard) with only one accommodation: a 2 hour nap before my afternoon shift. I tired easily for nearly a year…now I’m fully my old self. My scalp that was numb after surgery is still numb but I’m used to it now. I was told it was 50/50 that it would stay that way.

Since my life-saving surgery I’ve sent my neurosurgeon a card every anniversary to let him know how I’m doing and how grateful I still am he saved me. I’ve bought a house, slowly renovated it, resumed dating after not for over 20 years, and finally learned how to swim. After almost drowning in a pool at age 4 and 3 failed attempts to learn how, this is a MAJOR accomplishment for me.

Overall, I have to say I am beyond grateful for my neurosurgeon, my mom who has stood by me always, and what I learned from the people in here. Your advice, stories, and support …you took some of my fear away when I really needed it.

THANK YOU ALL! Stay strong! Live well!

3 Likes

Thanks for the update and awesome to hear! Take Care, John.

You too! Great update! It’s really encouraging to hear such great news all through. Thank you for sharing!

Richard

Great job. This is awesome news. Keep it up.

This is a great post and I personally always love seeing these positive posts as it helps others realise there is light at the end of the tunnel… God bless!

Celebrating with you! Thanks for taking the time to update. My family haven’t sent cards or yummy gifts to our surgeons and care team for a couple years – all our activity started six years ago and was mostly over four years ago. So, it’s time we let them know our gratitude for their work is as strong as ever. Thanks for the reminder.

You celebrate your life everyday and it is so uplifting to see that! You recognize how fragile life is, don’t you?

Neurosurgeons deal with a great deal of sorrowful situations. I’m sure the updates to your neurosurgeon bring him/her great joy and a true sense of accomplishment. (‘Makes me happy, too!)

Yes, I literally came within 12 hours of dying! I was floored when my uncle let it slip several weeks later…my mom had decided I didn’t need to know that information.

In the last two years I’ve also became a great-aunt twice and soon to be one for the third time! I never would have known them if not for the grace of god and my neurosurgeon (and his staff–wonderful people!). I actually stood up in church when the pastor asked what we were grateful for, and I told them about my surgery…the collective gasp in the sanctuary was quite loud as they didn’t know about it then and you couldn’t tell to look at me. (I started attending after my surgery)