What Was Your Most Terrifying Medical Moment?
The amazing bravery that comes with surgery
Posted Dec 01, 2009
Your mind's a funny thing. It's your internal camcorder. Sounds. Smells. Tastes. They all evoke powerful memories. Your own private trip down memory lane. And to me, nothing looks more like memory lane than the brain surgery I underwent when I was 13.
A typical Saturday for me in high school consisted of two things: Jack's Pizza and a classic ‘90s medical drama a la ER or Chicago Hope. The scene played out the same week after week. Around noon, my mother would plop those thin pizzas in the oven. Thirty minutes later, I'd start to smell the aroma of grease and gooey cheese practically oozing out of the kitchen. Then my family would gather around our living room TV, my father stretching out on the floor with his head resting on a pillow and a blanket over his feet.
You see, we needed to brace ourselves for all those stats and code blues. To us, it wasn't just an hour of mindless TV; it was instead like watching a home movie. We felt the heat from the sterile lights of the operating room. We knew all too well the medical jargon. We even felt the fear and confusion of the patients. For a good portion of my life, we were those very patients, and I couldn't help but wonder: Would I be the person I am today if not for one scary, life-altering medical crusade? My own private episode of ER, minus a ruggedly handsome George Clooney, if you will.
It all began when I was a wide-eyed 13-year-old. One night, I was eating dinner. I was watching "Wheel Of Fortune" and eating macaroni and cheese. The big wheel whirled around in all its glorious color. I tried to swallow, but suddenly, my food wouldn't go down. I took another bite. Gulp. Swallow. Nothing. It was like my esophagus had just stopped working.
Over the next few weeks, my condition became progressively worse. There were more and more foods that I couldn't swallow. My parents and I knew something just wasn't right. So in March 1994, we began what would be our entire lives for the next 6 months. I first went to a gastroenterologist to examine my esophagus and digestive system. I underwent a battery of tests, including multiple endoscopies, where they stick a tube down your nose with a camera on the end to examine your digestive track; I also had multiple radiation tests, where I had to swallow barium so they could get an x-ray view of food going down my esophagus - what little food I could eat at the time. All the tests came back clear - my digestive track was in perfect working order.
By this time, I had lost so much weight that I was 49 pounds! My mom even had to start blending my food because there were virtually no foods left that I could swallow. The digestive doctors were running out of tests to run and were still clueless as to what was happening to me. One doctor even told us: "Your daughter will have to be tube-fed for the rest of her life. I'm surprised she hasn't had problems before now." My parents were extremely medically savvy and wouldn't settle for this answer. They knew there was something medically wrong with me, so they asked the doctor if I could have an MRI of my spine; I'd had surgery to fuse my spine 2 years earlier. For some reason, they just had a hunch that the problem might be neurological.
I felt like a walking time bomb that could explode at any moment while we waited for the MRI results. Why couldn't doctors find out what was wrong with me? Was this merely all in my head? All I knew was that I needed answers and no one could give me any. As a 13-year-old girl, all I wanted to do was watch TV and go shopping, but instead, here I was, being poked and prodded. I was just downright scared and confused, hoping it would all be over soon.
The meeting with the doctor to find out the results of the MRI was overwhelming. He brought out the MRI scans and pointed to a compression in my neck. There it was, illuminated on the screen: the culprit that had been plaguing me for 4 months. A Basilar Invagination. That was the technical term he used for this very rare condition. My spine was growing up into my brain stem (the part of the brain that controls breathing and heart rate) and compressing it - doctors had only fused the lower half of my spine 2 years earlier, so since I was still growing, the top half had no place to go but upward! The doctor said that most people have a little tip on the end of their brain stem, which I don't have. If I did have it, he said, I would have stopped breathing and become brain dead the minute the compression started. As the doctor kept talking, everything began to happen in slow motion. His lips rattled off treatment options. His hands kept gesturing rapidly to the giant scan, which, through my teenager eyes, seemed to be getting bigger and bigger. Everything seemed to blur together into one big mess.
We found a wonderful doctor at the University of Chicago who performed the 14-hour surgery that September. It's strange, but for the first time, I felt a sense of calm before this surgery. For once, I wasn't petrified of entering that big operating room. I was ready for the surgery. It was my only hope of getting better. I stayed in the hospital for a few weeks, part of the time on a ventilator, and then had to wear a halo frame for 4 months to keep my neck still while it healed. I'd find out later that my brain stem was under so much pressure that when the doctor removed the spine, the brain stem vibrated for close to 10 minutes!
If this experience has taught me anything, it's to be your own advocate. Doctors may be brilliant people, but they don't know everything. I learned that the hard way, but now I know that you can never be too careful when it comes to your health. Ask questions. Get second opinions. In short, take your health into your hands. If my parents hadn't been my doctors, I would be sitting here today, a tube sticking out of my stomach, instead of a perseverant and determined young woman. And yes, I can - and do - eat whatever I want now!