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AVM Survivors Network

Embolization and craniotomy resection and freaked out

#1

I have 2 embolizations scheduled for this month in NYC. The day after the second one is the surgery to remove the AVM from the right temporal lobe. It’s 23 mm. After reading others experiences I’m really freaked out. I’m a 65 yo woman and not ready to lay around and being exhausted all the time. Any positive experiences out there.

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#2

I had an embolization and craniotomy in March 2018, for an 8mm avm on my cerebellum. I remember just how frightened I was before the surgery. It’s overwhelming.
The surgery is difficult and recovery is a pretty tough road, but I’m doing well now. Completely independent, plus I’m back to my pottery wheel and playing golf. You just need to take it slow and hang in there.
Take care
Carol

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#3

Thank you.

#5

I had stereotactic radio surgery in 1992 on my AVM after a rupture. I spent 11 days on life support and in a coma. I am now going to be 58 years old in June and I certainly don’t lay around nor am I exhausted all the time the recovery was slow but every day is better than the day before.

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#6

Hey there, I’m two years post-craniotomy with no deficits. The first month after the craniotomy was tough, with many different kinds of mental and physical therapies, but I don’t know how much of that can be blamed on a six-week medically-induced coma to keep me stable after my AVM ruptured. Good outcomes absolutely do happen. Best of luck!

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#7

What hospital and what surgeon(s)?

#8

Thank you.

#9

NewYork-Presbyterian/Weill Cornell Medical Center.
Dr. Knopman will do the embolization and Dr. Stieg will do the surgery.

#10

Thank you.

#11

Hi Pam. I am really not certain of all of the terminology that I see posted as my AVM hemorrhaged in '86 when I was 25 and sound asleep. Woke to four paramedics and then found out I needed surgery to remove what was the size of a baseball in the right front of my brain. 36 staples, ear to ear, and I battled headaches for four years after. Finally found my ‘guru’ (acupuncturist) that healed me of the headaches. I work full time, love my life, have side jobs and grandbabies and am not debilitated from the surgery. I do have to be careful of seizure ‘activity’ and am careful how I live but live more fully than most people I know that are half our age! I also do work with the very short term memory thing but most people don’t notice. Stay strong…life does go on after. XOXOXOXO and prayers your way…Katy

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#12

Thank you for sharing.

#13

Please let us know when you are having your procedures. We’ll be thinking of you

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unpinned #14
#15

@Cancrd Thank you. I am having embolizations on May 14th and May 21st. The surgery is May 22nd.

#16

You’re in good hands.

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#17

Thank you for that. It means a lot.

#18

Good luck tomorrow.

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#19

Thank you so very much.

#20

I hope you’re hanging in there. The waiting was so hard for me.
Best of luck again tomorrow
Carol

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#21

I am hanging in there. I really wish this was in the past already. I am so grateful I picked New York Presbyterian and the surgeons that I did. Outstanding!

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