My Story (Video Link)

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Finally put all the details together to share with my fellow AVM/AVM survivor community + anyone else who has questions…this is MY AVM story!!!

My name is Minda and I’m a 35-year old twin mom. I was born with an arteriovenous malformation (AVM) on the left side of my brain that ruptured on February 17th, 2020.

A brain arteriovenous malformation (AVM) is a tangle of abnormal blood vessels connecting arteries and veins in the brain. The arteries are responsible for taking oxygen-rich blood from the heart to the brain. Veins carry the oxygen-depleted blood back to the lungs and heart. A brain AVM disrupts this vital process.

I didn’t know about my AVM before it ruptured, but in retrospect my mother and I had realized I’d had a seizure after giving birth to my twins in back in June 2014. Before my AVM surgery, I was also a long-time sufferer of migraines.

When my my AVM ruptured, I experienced severe headache, vomiting, and paralysis in both of my legs. I had frontoparietal intraparenchymal hemorrhaging (stroke) which affected the use of my right side. A hole was drilled in my skull and a drain was inserted to relieve pressure. A pre-op endovascular embolization was completed and the AVM was removed in a left parietal resection (surgery) about a week later.

At the time, I’d lost my ability to walk. I have now fully regained my ability to walk with only slight deficits in balance, vision, short-term memory. and I’m pretty much headache-free!!

I have very little memory of the week following my AVM rupture - I was rushed to the nearest hospital in Virginia Beach and transported via helicopter (Nightingale) to the surgical specialists in Norfolk.

I am now 5 months post-op, in physical therapy 2X’s a week, and my recovery is going well. I’ve had a total of 2 cerebral arteriograms (most recent on June 1st, 2020), with another scheduled for follow-up next year. Thankfully, I have been able to resume most of my normal physical activities. (My latest bike ride was 6 miles!!! :slight_smile:

I thank God for the Sentara Princess Anne Hospital Emergency Department + Dr. David Shulmister, MD, my amazing surgeon, Dr. Wilson P Daugherty, MD, and the incredible team at Sentara Norfolk General Hospital! They are a fantastic medical team and it is truly a miracle that I survived!

[Brain AVM Aneurysm/Stroke Survivor Story - February 17, 2020] https://youtu.be/5uwrZS1GTx0

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Good to here your recovery is going well. I also had a rupture from my AVM. Had a lot of therapy after my surgeries for around 3 months. I lost control of my right side because my bleed was on my left. After just 2 months I was back to looking like your average person but still had some struggles. Had my AVM rupture back in 2000. By around 2002 was you could say back to normal but I’ll always have some minor problems. Mostly just my right foot isn’t as balanced and I have bad right peripheral vision. Other than that some struggles with multitasking because of short term memory loss but you just have to find a way to take notes and memorize things better. Hope the best for you.

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This sounds just like me!! My short term memory is one of my biggest struggles. I know I look normal to most people but some days walking is hard due to lack of balance and my peripheral vision is wacky!! I’m torn between being grateful to be alive and a little frustrated from not being 100%. I hope as time passes it gets better. I was right handed before all this, and now my left hand does most of the work…crazy weird. And yes, I take A LOT of notes. Lol. Yeesh.

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Well that’s actually one of the gifts I got from not being able to use my right hand for a little while. I learned how to use my left just as good as my right. After some time my right arm came back. It comes in handy being ambidextrous. A couple reason it helped me was work because of just using tools in both hands. 2nd reason when playing drums in marching band it helps being ambidextrous.

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Hiya @reallygeekin! Glad you’re here! My family and I are in Lynchburg and just got back earlier this summer from Virginia Beach! I would first recommend keep.google.com for notes. My wife and I use keep a lot! Hope all is continually improving!

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That’s so funny because I use Keep!!! It’s a life-saver, because it’s easy to use and open on my phone! My short term memory is a challenge but I laugh at myself often because my level of forgetfulness is off the charts hahaha!! I hope a year from now it continues to improve. I just blame it on my age, though! :joy::rofl:

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