My life was turned upside down in March of 2015, at the age of 35, when I incidentally discovered I had a life-threatening disease, an arteriovenous malformation, an AVM, in the right temporal lobe of my brain. In short, I had a tangle of blood vessels in my brain. Against my doctor’s advice, I scoured the internet for any and all information I could get my hands on, and I knew it was bad when I discovered that AVMs are sometimes referred to as “ticking time bombs,” leading to the worst outcomes imaginable, even death. How could this be? I was perfectly healthy and happy – a wife, a daughter, a sister, a mom of two.
The unusual thing about unruptured AVMs is that the approach to treatment is different than how one might approach, say, cancer. When my dad had cancer, there was no time to waste, and once doctors had a plan of attack, it was go time. With cerebrovascular diseases such as AVMs, doctors pause. It doesn’t always make sense to touch the brain, to treat the AVM, particularly for someone like me, who exhibited no symptoms and discovered the AVM incidentally. And in some cases, you can’t touch the AVM even if you want to if it’s too deep in the brain and too dangerous.
The American Stroke Association says that AVMs affect less than 1% of the population and 50% of people with AVMs will have a rupture in their lifetime. 10% of AVM ruptures will result in death.
What often happens, at least in my experience, is the patient has to ultimately decide the course of action (with input from various doctors, of course). Do you let it ride, cross all your fingers and toes, and pray that you’re AVM doesn’t rupture? Or do you proactively seek treatment, knowing that any procedure involving the brain is tricky and can potentially result in unintended neurological deficits? Answering these questions has been my two-year journey, trying to figure out the best course of action for my family and me.
I want to share that soul searching journey with you, how it impacted my everyday life and the lessons I learned, and how I ultimately made the decision to move forward with brain surgery. But surgery is only half the battle. I’ll need to recover, and it’s going to be a beast. I’ll share that with you too.
The truth is I’m going to be okay and I want to tell you about it. Life is all good because I’ve got sunshine on a (b)rainy day!
Xoxo,
Vanessa
P.S. It may be a while before I can post a story of my AVM Recovery. Please follow me on Facebook and Instagram for the latest updates.
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My intentions for this website are threefold:
- I want to share my story with family and friends, as I seek your prayers. My surgery will take place in July. I want to share my preparation and recovery with you.
- I want to be a resource for other AVM warriors. It is not an easy journey, but know you are not alone.
- I want to be a bigger part of AVM awareness. I am beginning to believe that this is my life’s work. Stay tuned.
