IT HAPPENED TO ME: I Needed Brain Surgery at 18

I started meeting in person with other people my age who had already suffered bleeds from AVMs. Most of them were dealing with permanent disabilities.
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May 4, 2015
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When I got to my big-ten college in 2010, I figured it was the beginning of the rest of my life. After four years working my ass off in high school, I was finally free! I went to my first frat party, had my first drink and pulled my first all nighter, all of which led to my first experience overdrawing my bank account. That, in turn, led to another first: I started volunteering for paid medical research on campus.

It was all pretty straightforward; answering questions about my (nonexistent) sex life, wearing a watch that tracked how much I slept, even going in for an MRI so that researchers could watch my brain light up when they showed me different photos. The next day, I got a surprise phone call, and felt my stomach fill with butterflies.

“Joanna? It’s Dr. Fitzgerald, from the MRI. While we were looking at your scans, we saw something that looked a little out of place. You didn’t forget to tell us about any brain conditions, did you? No? Well, you really need to get it checked out. I’ve already scheduled you an appointment with University Health Services. Tomorrow. Good luck.”

Well, shit, I thought. That doesn’t sound good.

Fast forward to the following week: My mom and I sit anxiously in the office of the university neurosurgeon. He’s a kind looking man with a soft face, and he looks me directly in the eye when he tells me that he has some bad news. I zone out for a second.

When I come back, he’s showing me a picture of my brain that looks like it has a ball of yarn in it. He’s saying that the ball of yarn looks harmless, but it’s actually a bunch of blood vessels that might kill me.

Known as an arteriovenous malformation, or AVM, these extra blood vessels have thin walls that make them prone to bleeding, causing strokes or death. Their location in the left frontal lobe of my brain means that any attempt to remove them would jeopardize my speech, logic and personality. The surgeon says he has a daughter my age, and that if I were her, he wouldn’t operate. That it would be better if I had never been diagnosed. In his opinion, it’s too risky to do anything, but I’m encouraged to seek multiple second opinions. I feel like I’ve been handed a death sentence.

Over the next three months, I meet with four more surgeons around the country—and they were just the first ones to return my parent’s desperate phone calls. In between meeting with professors to explain why I was missing class, staying up late to finish the work I owed them and researching various treatment options, it seemed like I had entered the twilight zone.

The most attractive route was a procedure to block the blood flow through the vessels in the AVM. But, I was told, my AVM (and it felt incredibly strange to own it that way) was too big for that to work.

Another doctor proposed a very specific form of radiation, which would slowly fry the vessels until they withered and died on their own (an image which I liked very much). But that required having a metal frame temporarily screwed into my skull to guide the radiation. No, thank you.

But by far, the least appealing option was the one presented by a doctor whose excessive use of hair gel left him resembling a Ken doll and made me doubt his overall decision making skills. This assessment might have been a little harsh, but after he offered his medical opinion, I wasn’t disposed to be nice.

“Your condition is poorly understood and extremely dangerous. You need to have this mass removed immediately. I recommend a craniotomy—we’ll open up your skull for about 17 hours and take out all of the offending blood vessels. Of course, you’ll need to be awake during the procedure so we don’t lose you, and there’s about a 70% chance that it will leave you in a permanent vegetative state.”

Oh. Hell. No.

After that, I simply shut down. Overwhelmed by the decisions I was being asked to make, I simply threw up my hands and said, “Nope.” And by that, I mean I grew increasingly depressed and anxious and stopped caring about anything that had mattered prior to the diagnosis.

I hit bottom while taking an exam during the hardest class of my college career. I had always been a good student, but as I rifled through the test pages looking at questions, my mind went blank and I couldn’t remember how to answer a single one. I burst into tears and started shaking, dropped the papers back on my professor’s desk and walked out. I wanted to disappear. A week later, I started therapy.

The first thing I did in therapy was give myself permission to stop actively pursuing medical treatment. Overloaded with information, I had already given up, and the only way to dig myself out was to give myself time to process.

My therapist encouraged me to focus on something else, and because it seemed like the biggest luxury of all, I started thinking about my future. I realized that I wanted to travel. I wanted to go all over the world, with or without the possibility of collapsing into a heap and dying. I wanted to see all of Europe.

I had been in therapy for almost a year when I started looking up AVM support groups online. Shortly after, I started meeting in person with other people my age who had already suffered bleeds from AVMs. Most of them were dealing with permanent disabilities as a result, and seemed incredulous that I had the luxury of a serendipitous diagnosis. They urged me to protect myself by seeking treatment, but most of all, they made me realize that I wasn’t as alone as I had felt. I was starting to wake up from a very long, bad dream.

One day, after almost a year of therapy and travel-focused thinking, a magical thing happened. I finally felt better. It felt like somebody had turned all of the lights back on. I stopped needing to sleep all the time. I wanted to see my friends. I wanted to experience more firsts, like I had at the start of college. And one of them, I decided, would be brain surgery.

By brain surgery, I mean gamma knife radiation. Although the idea of having a metal frame screwed into my head still terrified me and I was sure I would die the minute I walked into the hospital, I wanted to make a decision and have it done with. I wanted to take charge of my life again. Although I was afraid of treatment, I was more afraid of what could happen if I didn’t have it.

So, on August 21, 2013, I had my first of two gamma knife treatments. Although the night before my appointment was almost as bad as when I failed my exam, I wasn’t going to turn back.

And guess what? I didn’t die. The drugs they gave me to help stay calm worked so well that I don’t even remember having the metal skull frame applied or removed. And by the time I walked out of the hospital, I felt like a free woman.

The best part about being done with treatment? I was ready to realize my dream of seeing Europe. The following summer, I spent two months traveling solo through Ireland, Italy, France, Spain and Scotland. It was everything I had dreamed it would be, and more.

The “more” part happened the night before I left Florence, when I met a cute guy with a hot accent. We stayed up all night swapping stories, and he agreed to meet me the following day in Venice. Once he arrived, we spent 48 hours exploring the city together and became virtually inseparable. A week later, in Paris, he asked if I would come visit him back at home. In Australia. I said yes.

And so, just after New Years, I hopped on a plane at LAX and emerged 14 hours later in Sydney. I was only supposed to stay six months, but somehow it’s turned into almost two years. My first semester of grad school starts soon, I’ve kept traveling, and I’m even starting to think this guy might be The One.

My future still holds a lot of scary unknowns, but for the first time in my life, I feel like I can handle them. After all, it’s not brain surgery, right?