How Doctors Almost Missed the Fact That My Spine Was Compressing My Brain Stem

My parents had to fight to get the MRI that proved something was really wrong.

Most Popular

I was born with a genetic bone and muscular disorder called Freeman-Sheldon Syndrome, so I'm no stranger to hospitals and doctors. In fact, I had more than 20 surgeries by the time I was 10 years old.

But the one that stands out the most in my mind? The 14-hour brain surgery I underwent in September 1994. I had just turned 13.

The symptoms began six months earlier over dinner one evening. I was watching TV and eating macaroni and cheese when I noticed the food getting caught in my throat. It was a weird feeling — I could swallow just fine, but the food wouldn't go down; it was like the muscles in my throat had become weak overnight and wouldn't work anymore.

Advertisement - Continue Reading Below

I had a history of being a hypochondriac, so when I was still having problems a few weeks later, my parents took me to the doctor, who suspected it might be anxiety and sent us on our way with a prescription. Maybe if I could just relax, I thought, everything will go back to normal.

Over the next several months, however, things didn't go back to normal. In fact, they only got worse. The number of foods I couldn't swallow grew to the point where most of my food had to be blended just so I could get nutrients. I lost so much weight that I was down to 49 pounds, and even though I'm short (just under four feet), you could tell that it was all taking a big toll on my body.

More From Personal Stories
20 articles
sofia sanchez viral down syndrome video
Girl Challenges Stigma Surrounding Down Syndrome
brittany maynard deborah ziegler excerpt
This Is How My Daughter Asked Me to Help Her Die
What It's Like to Have Double Depression
amputee kitten helps veteran recover from PTSD
Amputee Cat Helps War Veteran Struggling With PTSD
i regret having kids
The Maternal Regret Movement

In an attempt to get some answers, we saw specialist after specialist in Chicago, from gastroenterologists to ENTs to general surgeons. In between the haze of appointments, I underwent a battery of tests, starting with a barium swallow. When that came back fine, an endoscopy was ordered in which a tube with a camera explored every inch of my throat and stomach.

Again, everything was normal. Surprisingly, my intestinal system appeared to be in perfect working order. The doctor concluded that because of my disability, the muscles in my throat had simply become weak over time. She was actually surprised it hadn't happened before, and told us matter-of-factly that I would need to be tube-fed for the rest of my life.

This diagnosis didn't sit well with my parents, who had always been my biggest advocates. They knew there had to be some other explanation, so they went to my spinal surgeon and insisted he order an MRI.

I have no doubt that it was my parents who saved my life with their insistence that I get an MRI.

It turns out my parents were right.

A few weeks later, we sat in the neurosurgeon's office, my MRI scans glowing under the light. Our moment of truth had arrived, the moment we'd been searching for all these months.

"Do you see it?" the doctor asked us as he pointed to my upper spine. "It's right there, where the spine is on the brain stem. I can't believe no one has caught this yet."

There it was — as plain as day.

Diagnosis: Basilar Invagination.

My spine had been compressing my brain stem. As the doctor told us, the compression was the result of a spinal fusion I'd had two years earlier. At that time, doctors only fused the lower half of my spine, and because I was still growing, the part they didn't fuse continued to grow. It eventually grew up into my brain stem and compressed it, which was why I couldn't swallow and was even beginning to experience muscle weakness in my right hand.

But what really scared me: The only reason I was still alive was because I didn't have the little tip on the end of my brain stem like most people do. If I'd had it, I would have died the instant the compression began, because the brain stem is responsible for such basic functions as breathing and heart rate.

We immediately scheduled surgery, which first involved lying in traction for five days to relieve some of the initial pressure before doctors could operate.

By this point, all my fears had vanished; I just wanted to get this surgery over with and know that everything was going to be OK. The long surgery was a success, and I had rods placed in my neck to fuse the rest of my spine and keep it from compressing my brain stem. Afterward, the neurosurgeon told us that when he removed the spine from the brain stem, the brain stem vibrated for more than 10 minutes because it had been under so much pressure for so long.

I spent three months at home recovering before going back to school. I had to wear a halo frame to keep my neck still while everything healed, but thankfully, everything healed and life slowly but surely went back to normal for me.

Looking back now, 22 years later, I have no doubt that it was my parents who saved my life with their insistence that I get an MRI. They never once wavered or blindly accepted the doctors' excuses and assertions.

Who knows where I'd be today if my parents had listened and just given me a feeding tube? I certainly wouldn't be enjoying my favorite foods, like my mom's desserts, which I'm thankful to say I enjoy in abundance these days.

Read Next: