Arteriovenous Malformation (AVM) survival and side effects

Posted by auldcelt @auldcelt, Dec 16, 2016

I'm a survivor of an AVM in my right hemisphere. Since the surgery I am dealing wth migraines and wondered if anyone else has experienced this. If you have what have you tried to get back to normal living. I'm also interested in reading about studies and research on AVMs

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mockinbrd | @mockinbrd | 1 day ago

In reply to @lisalucier "@mockinbrd - I see that you had a craniotomy a few years back, and I'm wondering..." + (show)

@lisalucier
Hello Lisa,
Thanks for thinking of me. I’m doing pretty darn good. Still have some diminished abilities. But I think Mayo is such an incredible place. I would recommend it to everyone. My doctor, Giuseppe Lanzino, is the best. And I have the privilege to send him and nurse Reps a valentine’s flower on each the anniversary of my surgery, February 14th.

Lisa Lucier, Moderator | @lisalucier | 1 day ago

In reply to @mockinbrd "I'm so pleased you were able to stumble across this forum. I think you will find..." + (show)

@mockinbrd - I see that you had a craniotomy a few years back, and I'm wondering how you are doing now?

lynf | @lynf | Jan 14 5:27am

In reply to @stellgma "Hello, does anyone else have a dura brain fistula? I was diagnosed with 2 of them..." + (show)

@stellgma
Hello, I had a Dural artiovenous fistula DAVF. I’d be happy to chat if it would be helpful to you.

Lisa Lucier, Moderator | @lisalucier | Sep 30, 2025

Hi, @auldcelt - wondering how you are doing lately?

avmbrainbarbara | @avmbrainbarbara | Sep 20, 2025

Thank you for reaching out! Yes I have and appointment with a headache clinic hopefully the Dr can help . Dark house meditating helps but never goes away.

Lisa Lucier, Moderator | @lisalucier | Sep 18, 2025

In reply to @avmbrainbarbara "AVM surgery 2021 Right side In the last 3 yrs I have had extreme painful migraine..." + (show)

Welcome to Mayo Clinic Connect, @avmbrainbarbara. Having to quit your job is a massive life change. I'm really sorry your doctors are making you feel unseen and not heard.

Wondering if you have consulted with a neurologist specializing in headaches? What do you do to feel better when you experience dizziness?

avmbrainbarbara | @avmbrainbarbara | Sep 18, 2025

AVM surgery 2021 Right side In the last 3 yrs I have had extreme painful migraine /headaches . I have had to quit my job and not sure what to do about them . Feel dizzy and my head still hurts where the opening of the surgery. Is Right eye Drs are making me feel unseen and not heard

Colleen Young, Connect Director | @colleenyoung | Oct 19, 2023

In reply to @mistyeve "Hello.... I scrolled through a few post to see if I could find any information on..." + (show)

@mistyeve, have you had the embolization? How are you doing?

mistyeve | @mistyeve | Oct 6, 2023

Hello.... I scrolled through a few post to see if I could find any information on a PAVM (pulmonary).... I have one that was found by chance on my left lung. Embolization is the recommendation but I would like to know what others have experienced.

intrepiddoc | @intrepiddoc | Jul 21, 2022

In reply to @colleenyoung "Hi @intrepiddoc, welcome to Mayo Clinic Connect, an online community connecting patients, allowing people to share..." + (show)

3 years. Too large >5 cm, and areas too important to consider surgery. Treatment at Emory which was spectacular. Had consultations at Barrow, Stanford, and USC prior to deciding on Emory. 2 courses of radiation and now over 90% gone but just per MRI/MRA. Pending angio in a few months.