Fighting the "pickle" in my head

This doctor's experience with a brain tumor and surgery gave him a new outlook on his life and his practice.

By Richard A. Williams, MD
Family Physician/Grants Pass, OR

"The pickle" is what our family calls my brain tumor. To my son Zachary, a pickle is something bad that needs to be removed from his McDonald's cheeseburger. Getting rid of it involves lifting the top of the bun, removing the pickle, then replacing the top with little disturbance to the rest of the sandwich.

I used this analogy with Zachary when explaining surgery to remove "something bad" from my head, because he had observed my wife, Barbara, and me performing such "surgery" many times on his cheeseburger. After my explanation, Zachary asked me what was actually growing in my head. I hesitated, not wanting him to tell his preschool classmates that his dad had a brain tumor. Before I could respond, he said, "I know, Dad. Let's just call it a pickle."

And the name stuck.

The errant path of self-diagnosis

I vividly remember the morning in January 1996 when I first noticed a problem with my vision. I was nearing the end of my family practice residency in Modesto, CA. Barbara and I were approaching our fourth anniversary, Zachary was 7 months old, and I had just accepted a position with a group in Oregon. My life was just about ideal.

As I bent down to put on my shoes that morning, I noticed that I couldn't see part of the fireplace across the room with my left eye. Later that weekend, I described the incident to Barbara. Having studied clinical neurology in graduate school, she mentioned the possibility of a brain tumor. While I've learned over the years that her first impressions are usually correct, I brushed off her concern, convincing myself that everything was okay. Perhaps I just needed new glasses.

Over the following weeks, I repeatedly squinted, rubbed my eyes, cleaned my glasses, and closed my right eye to see if something was really wrong. One day while reading, I noticed that if I looked directly at a letter, it disappeared. If I gazed slightly to the side, however, it magically reappeared. I finally decided it was time to see a doctor. Forgetting neuroanatomy and losing my objectivity, I veered down the path of self-diagnosis and obtained a referral to an ophthalmologist.

Sitting uneasily in the ophthalmologist's chair for my exam, I wanted a quick explanation. But the longer he remained silent, the more my anxiety grew. I tried to describe my blind spot, but the defect didn't show up during visual confrontation. He thought I probably had a benign retinal condition with a strong likelihood of spontaneous recovery. When I reluctantly raised the question of brain disease, he told me that was unlikely because I had no afferent pupillary defect.

At my follow-up exam, however, the ophthalmologist was still unsure of the diagnosis, and suggested that I see a retina specialist. My subsequent retinal exam was completely normal, implying that something was wrong in my brain. Visual field testing confirmed an ominous defect in my left eye. This finding, along with reduced acuity and the normal retinal exam, pointed to optic neuritis. I immediately recognized the possibility of multiple sclerosis. A brain MRI was ordered, and my sense of dread escalated.

The transition from doctor to patient

On the day of my MRI, I experienced a strange dichotomy: One moment I was the doctor seeing patients in the ICU; a short time later I was the patient in the MRI. Halfway through the exam, the radiologist entered the room and said I needed a gadolinium contrast scan. I was fearful that he had examined the initial images and seen something alarming.

When Barbara and I met with the radiologist afterward in his office, he pointed out a 3-cm mass in my pituitary, displacing the optic nerves and carotids. It looked like an adenoma that could be treated surgically. We were oddly relieved and elated that it was probably a benign brain tumor, and not something as potentially devastating as MS.

From thinking about brain surgery, however, my elation quickly gave way to fear. I called my family physician, Peter Gaines, and finally had my first thorough exam with a primary care physician. After reviewing the radiologist's report, he asked several colleagues to recommend the best pituitary surgeon in the region. They agreed on Charles Wilson at the University of California-San Francisco Medical Center. Wilson scheduled a consultation five days later and booked the surgery that same afternoon.

Suddenly I worried that everything was happening too fast. Had the workup been thorough enough? Did I need a second opinion? Was it right to schedule surgery so quickly? After much agonizing, Barbara persuaded me to go ahead, knowing that waiting would only prolong our anxiety. Gaines gave me some simple but wise advice in preparation for my surgery: "Rick, be a patient."

As Barbara and I approached the UCSF Medical Center, the fact that I needed to be treated at one of the world's finest medical institutions struck me as a bad sign. Up to that point, I had taken comfort in knowing that the people caring for me were associated in some way with my own hospital, where I was known. At UCSF, I was just another patient needing specialized care.

Wilson was two and a half hours late for my appointment, but I didn't mind much since I had no other plans. (Brain surgery has a way of clearing your schedule.) Besides, I knew he was a top surgeon in his field.

When he finally arrived, the office visit was brief, because he had to get back to the OR to finish a procedure that had already taken longer than expected. He reviewed my films and read the report from one of his residents, whom I'd seen the day before. Because of the size of my tumor, he didn't express optimism about my case and didn't offer much reassurance. I felt more scared than before I walked in.

My wait for surgery was agonizingly long, since Wilson's team was several hours behind schedule. I faced a patient's worst nightmare: delicate brain surgery late in the day by a surgeon who had just finished a prolonged and difficult procedure. Should I reschedule? No, I decided. If Wilson felt confident, then I had to trust him and his staff.

As I made my way to the pre-op room, I seemed to leave my identity behind in stages. I said good-bye to my extended family in the waiting room, and to Barbara and my mother in pre-op. I took off my wedding band, glasses, and watch. When I put on my hospital gown and got my IV, I completed the transformation from Rick the husband, father, resident, and healthy guy to Rick the patient awaiting surgery.

My anesthesiologist was compassionate and soon put me at ease. Of course the Versed might have helped. I woke up in the recovery room to the sound of Barbara at my bedside singing "Praise God From Whom All Blessings Flow." It was a perfect expression of the faith that had helped us weather this unexpected storm. I struggled to mouth the words of the hymn, but I couldn't squeak anything out because my mouth was terribly dry. It was hard even to swallow. I spent the rest of the night in the neurosurgery ward, unable to sleep.

My recovery went smoothly. I was home in two days, and back to work in two weeks. I quickly resumed the fast pace of residency rotations and planned our move to Oregon. The tumor and my surgery began to seem like a bad dream.

We bought a house and moved to Grants Pass, a beautiful small town in southwestern Oregon, and I started my new job. Two years later, we had a second son, Jonathan. I had MRI scans every six months, each of which seemed to push my tumor further into the past.

In November 1999, nearly four years after my surgery, we were having dinner at a local restaurant when I received a call from my new family physician. He said my latest MRI showed a definite recurrence of the tumor. Barbara and I immediately lost our appetites. Over the following days, we weighed our options, eventually deciding on surgery again because the risk of pituitary damage was less than with radiation.

Once again, we went through the stress of planning and anticipating surgery. This time, the process seemed less intense because the tumor was now a known intruder. However, the monthlong wait for surgery seemed excruciatingly slow, and I had difficulty concentrating on my patients. Fortunately, Zachary and Jonathan were wonderful distractions.

At UCSF, our visit with Wilson was much more relaxed than the first time, and he spent plenty of time answering all our questions. The surgery was tougher this time, however, and the recover was more painful. Once again, though, I was back at work within two weeks.

Learning the valuable lessons of illness

Reliving my experiences while writing this has reminded me of just how scary it can be to be a patient. I learned what it's like to wait for appointments, referrals, and a diagnosis. More profoundly, I now know what it's like to have things go wrong: to deny that a problem exists, to experience the terrible anxiety of the unknown, to be misdiagnosed, and to have something growing out of control in my head.

I have agonized over treatment decisions, and have learned the value of good advisers when under tremendous stress. I have seen the errors that can occur when the family physician is bypassed in the diagnostic pathway. Perhaps if I'd seen mine in the first place, instead of acting as my own diagnostician, my tumor might have been discovered earlier.

Then there's the role confusion that occurs when we physicians become patients. When we try to act as our own doctors, as I did, we serve ourselves poorly. We have instant access to medical expertise and consultation, but our interactions with our peers are often informal and fragmented "curbside consults," without a full H&P. Those consults may lead to inaccurate diagnoses due to a lack of information, or to a subconscious lack of objectivity on the part of a colleague. All these factors can be barriers to good care.

My experience has changed me, my family, and my practice. It has renewed my sense of wonder about my body's capacity for healing, and the miracles of modern medical science. My faith has been challenged and strengthened. I have grown to appreciate in a new way my life with Barbara, Zachary, Jonathan, and Elizabeth, our new baby daughter. I have had an opportunity that few people have to experience a flood of support from my loving family and friends.

Finally, my experience has given me the chance to enter my patients' lives in a way I couldn't have done before. And because I am able to share my experiences with them, and empathize with what they're going through, I can now offer them hope not only in my own medical expertise or care, but in the fact that I have been through it, too.

 

Richard Williams. Fighting the "pickle" in my head. Medical Economics 2001;17:93.