Sharing My Story With Patients


By Mary Zupanc

Her parents stare back at me and then at each other, their eyes wide and lips pursed. I repeat, “We should consider brain surgery for your child.”

The father can only stammer, “Brain surgery?”

This conversation never gets any easier. As a pediatric epilepsy specialist, I remind them of the seriousness of their child’s condition, and how other treatments failed to reduce the number and severity of the seizures. I then gently take them through the options, including the risks of surgery versus the risks of ongoing uncontrolled seizures.

I can understand these parents’ concerns. Their questions are often similar: How risky is the procedure? Will brain surgery leave lasting effects? Can we try more or different medication instead?

Earlier in my career, I would have countered only with data, facts and figures. But these days, I am sure to include some version of my own story.

I first suspected something was wrong in 2013 when my marathon times increased by more than an hour. A lifelong runner, I suddenly had slow and heavy legs. I was always tired, and I had inexplicably gained weight.

A battery of tests that summer indicated perfect health. Yet symptoms continued: By fall, I had difficulty focusing my left eye. In late January 2014 I realized during a morning jog that I could no longer smell the honeysuckle along my route.

And then it happened. One February night my husband, David, awoke to find me convulsing beside him in bed. He was unable to rouse me.

After I awoke, David said he thought I had had a seizure. I had no memory of it, but when I noticed the aches in my body, the twisted bedding and my rumpled pajamas, I knew my husband was right.

Only this time, I wondered. Days after my seizure, an M.R.I. scan revealed a bifrontal meningioma, a tumor that affects the brain’s lining and can lead to memory loss, personality changes and seizures. Though these tumors are rarely cancerous, my symptoms were worsening. Surgery was my only option.

All the fears and concerns I had been hearing over all those years from patients and families now took on a new dimension, and the same questions arose: How risky is the procedure? Will brain surgery leave lasting effects? Can we try medication instead?

Now I was the one asking those questions, and the usual data and statistics did not provide much relief.

I routinely tell parents that a young brain’s plasticity helps it heal and change more easily than an adult brain. But my brain was more than 60 years old.

And the possibility that I could die in surgery loomed large. More frightening, however, was the possibility of surviving the surgery, but no longer being the same person. I had seen this in patients who developed encephalitis, and it is truly heartbreaking. They grieve the loss of their former selves.

Surgeons removed the tumor from my brain during a four-hour procedure. The mass arose from my cribriform plate, compressing my left optic nerve and affecting the pituitary gland. It was about two inches in diameter, and had been growing for at least 10 years, possibly even 20.

The seizures are now gone, and I no longer have vision problems. But my surgery has had other lasting effects.

When I recently met with two parents to discuss their child’s ongoing seizures — the patient had undergone surgery to remove a portion of a brain tumor, yet seizures continued, so a second surgery to remove the entire mass was needed — the couple asked about risks, alternative options and medications. I answered, and they asked again.

Not so long ago, I might have inwardly grumbled when I heard the same questions repeated. Now, I answered as calmly and thoroughly the fourth time as I did the first.

These days, parents’ questions have even more weight. I pause and listen when they relay what they learned on the Internet about their child’s condition. I might have dismissed this before, but now I understand: They are desperate for information and some sense of control.

For many physicians, facts, figures and data are king. For me, feeling truly vulnerable for the first time has transformed my life and practice. I understand better than ever that patients and families do not want to be treated like a number or a diagnosis, to have their feelings dismissed or their fears treated casually. They need a physician, but they also need an advocate, an ally and a partner.

And that is why I tell my story. I want them to know they are not alone on this journey. After all, for the rest of my life, I will be both a physician and a patient.

Dr. Mary Zupanc is division chief of pediatric neurology and director of the pediatric comprehensive epilepsy program at the Children’s Hospital of Orange County in Southern California and University of California, Irvine.