Hospital employee tells man's family they 'don't know where he is' following his brain surgery

Tracey Folly

*This is a work of nonfiction based on actual events I experienced firsthand; used with permission.

My father had brain surgery over a decade ago. He was diagnosed with Parkinson's disease seventeen years ago. When a neighbor spotted him shaking uncontrollably, he suggested brain surgery to help with his symptoms.

The neighbor had suffered from a similar condition and successfully underwent a procedure that improved his symptoms and his life. After nearly a hundred doctor's appointments and evaluations, doctors performed the surgery on my father. The surgery was not successful, but that's a story for another day.

Following my father's surgery, my mother and I walked from the hotel where we were staying to the hospital where my father was staying. We found an information desk and asked where we could find my father.

The woman behind the information desk said she didn't know. She frowned at the computer screen for a bit before telling us there was no one there by that name.

"Are you sure?" I prompted. "I know he's here. He just had brain surgery."

The woman frowned some more and tapped the keys on her keyboard. "I don't know where he is," she replied. "But he's not at this hospital."

I felt a lump form in my throat as my mother and I exchanged panicked glances. We each had the same thought. We thought my father had died on the operating table. But even so, shouldn't the hospital have some record of his existence?

The woman eventually gave up on locating our wayward family member and sent us to a nurse's station on another floor to ask for help. After a similar experience, the nurse told us he was in radiation.

"Radiation?" I echoed. I was growing more alarmed by the second. "Why would he be in radiation?"

The nurse shrugged. "I don't know," she replied. "Does he have cancer?"

"No," I replied. "He was here for brain surgery."

She made a few phone calls. Finally, she had a lead. She sent us to a waiting room clear across the hospital where a volunteer promptly helped us out, located my father's whereabouts, and had the surgeon contact us with an update. Thank goodness for that volunteer.

My mother and I were finally assured that my father was indeed still alive. And for the moment, we thought the surgery had been a success, and we were happy. It would take months before we found out the surgery was useless.

For anyone curious, the surgery was deep brain stimulation (DBS) for Parkinson's patients, and the hospital, which I won't name specifically, was in Boston, Massachusetts. While DBS surgery has proven to be wildly successful for some patients, it was a complete waste of time, energy, and hope for my father.

Neurologists said only half the electrodes implanted in his head were functional and they had been implanted in the wrong place, not deep enough. They suggested he could have revision surgery to correct those shortcomings and try again, but at his age, it could cause more harm than good.

My father along with our family and his doctors decided not to have a second surgery.

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