Newly discovered AVM

So Christmas Eve, I was having a surgery for a urethra stricture and I woke up from anesthesia with an inability to move or feel my right arm.

They thought I had a stroke, but actually they called it a focal seizure from an AVN in the left side of my brain. Since then I’ve had a few follow ups, yesterday I had an angiogram.

It turns out they’re calling it “a left parasagittal dural arteriovenous fistula Cognard grade 4 fed by branches of the bilateral middle meningeal arteries.”

The doctor said basically they would do another angiogram with me under full anesthesia where he would put a glue (?!?) to prevent it from worsening. It seems this one is actually more severe but easier treatable

I’m optimistic, but this is the most challenging month of my life. I’m still having issues from the urethroplasty that I initially went in for. I’m also in recovery from drugs. 3.5+ years

it’s been two days since I’ve had any prescription Adderall and I’ve noticed that the numbing and tingling in my right hand is decreased significantly. Seems kind of obvious

thanks for letting me post here. I hope I can find some helpful information or this helps somebody

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Welcome, and thanks for joining us! Our common line is that it’s great you found us, but too bad you had a reason too. We have a wide range of experience here, and a lot of folks have had embolization. I imagine we will see some add their experiences. I had Gamma Knife after a bleed. We are all different but hare a lot of similarities in many ways.

I have just switched to Brivaracetam from Levetiractam due to having a seizure a couple years back and have been fortunate to tolerate both well, although I find I have a little more energy now.

Hopefully all can happen soon for you, John.

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I refused to take levitiracetam

Same with zonisimide.

It was like dumb in a pill

@Kevin7

Apologies! I missed your initial post. How are you doing? I had a dural arteriovenous fistula, probably Cognard 2a+b rather than 4. I had an embolization with glue in April 2017 and while it took me a year or two to feel better, I’m back to normal for the last 7 years.

Have you progressed with the embolization or are you still thinking about it?

Best wishes,

Richard

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Welcome to the family & sorry to hear about your AVM… please keep us posted on your journey… you will get through this… God bless!

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