Shared Stories: My own best medical advocate

Mary Nieraeth contended with periodic epileptic seizures in childhood, and episodes reappeared under the stress of being a full-time working mother and wife.  She urges everyone to be actively involved in their own medical treatment.  Shared Stories is a weekly column featuring articles by participants in a writing class at the Norwalk Senior Center.  Bonnie Mansell is the instructor for this free class offered through the Cerritos College Adult Education Program.  Curated by Carol Kearns

By Mary Nieraeth
Ready for summer vacation, my parents, two younger sisters and I packed into our 1960’s Chevrolet station wagon. Headed about 400 miles from Illinois to Minnesota to visit relatives, I recalled playing Go Fish, I Spy and other games with my sisters to pass the time. While driving, my father suddenly veered off the road into a shallow ditch to avoid a head on collision. 

We were jostled around since there were no seat belts in our vehicle. My sisters and I were thrown to the right side of the middle seat and my head banged into the window. This trauma to my head was disregarded by my parents. However, it has lingered in the back of my mind since it may have been a contributing factor to the story that follows.

A few weeks later, I began second grade. My parents and teachers both observed incidents when I stared out into the room in a trance-like state for about 30 seconds. I never had any recollection of these incidents. After referred to a pediatric neurologist, an EEG and MRI of my head revealed normal results. 

Because these staring episodes continued, the neurologist diagnosed this as epilepsy. Anti-seizure medication was prescribed but it took many months before finding the correct medication and dosage for my condition. In my mid-teens, the neurologist weaned me off the medication, with no further seizures during my high school and college years.

During my mid-twenties, I moved from Los Angeles to Boston for graduate school and employment as a registered dietitian. This was a stressful time with many life adjustments. Shortly after starting my job, some coworkers observed me doing a peculiar behavior while eating lunch together. I had no recollection of this but knew I needed to see a doctor. 

My primary care physician expedited a referral to a neurologist. Following an EEG and MRI of my head, the results were normal. I was started on medication and instructed not to drive. Fortunately, I did not have a car and was using public transportation. Within a few months, my seizures were completely controlled.

The next twenty years were without any reported incidents of seizures. In my early forties, however, I was married, working full time, and had three children in middle school. On a busy Friday morning, the weekend of the annual school festival, I drove to the grocery store then planned to drop off some items at the festival. I was stressed from anticipation of being outside many hours that weekend in the hot September weather. 

Returning home from the grocery store, I missed the turn into the school due to loss of consciousness. I had no recollection of this happening but, apparently, ran into a truck waiting at the traffic light. The impact caused my van to veer to the right, up onto the lawn outside a medical building, instead of into oncoming traffic.  

After the accident, my life drastically deteriorated.  I lost my driver’s license, my job was terminated, and I continued to have uncontrolled seizures. My doctor referred me to a new neurologist. 

Anxious, frightened and depressed, I had my first appointment. After a quick knock on the exam room door, a male doctor entered the room. Without making any eye contact with me, he announced, “I’m Dr. Indifferent.” He picked up the clipboard and glanced at my completed medical form. 

“So, you are here for seizures. When was your last one?”  

“I’m not sure since I don’t know when I have one. My husband said I had one last night.” 

“Do you know what happens when you have one?”

“No, my family says I rock back and forth with my upper body or move my right arm in and out.”

The doctor verified my seizure medication and dosage. Next, he checked reflexes in my elbows, knees and ankles, arm and leg muscle strength, peripheral vision, coordination, balance, hopping, and walking.  He asked basic math computations, current history questions and checked my short and long-term memory. The process was exhausting. 

Without comment on my test results, he took out his prescription pad, scribbled a higher dose of the same medication and handed it to me. As he walked out the door, he told me to return in one month.

During the following weeks, I decided to keep records of the date and time of my seizures, at least those seen by my family. Feeling proud of my efforts, I brought my notes to the doctor, but he refused to look at this information. 

I felt discouraged about not having any improvement in my seizures with the higher medication dosage. He did not perform an assessment of my physical and emotional state. I felt invisible in his presence, anxious and depressed about my severely limited lifestyle. 

Finally, he handed me a prescription for a second medication and again told me to return in one month. Clearly, connection with his patient was low priority for this doctor. 

Almost immediately, I became restless and drowsy on the new medication. I called the office but was told to continue the medication. My symptoms and seizures continued. I was losing hope about my worsening condition but refused to give up. 

During my follow-up appointment, the doctor interrupted me and rudely exclaimed, “You have to learn to live with these symptoms. There is nothing more I can do!”  

Feeling appalled and dismissed by his comments, I left the office and vowed to myself never to return to Dr. Indifferent.

A few weeks later, my husband showed me an article he read in the Parade magazine of the Los Angeles Times newspaper entitled “Their Best Chance for a Normal Life“ (9/18/2005). This article discussed medical and surgical options for people with epilepsy. 

My feeling of hope returned as I explored the referral process with my medical insurance to the UCLA Seizure Disorder Center. 

Several months later, I had my first consultation with an epilepsy specialist. He assured me that the medical team’s goal was to find the root cause and best treatment for my seizures.
During the next year, I completed many tests and medication changes as part of the preoperative protocol for epilepsy surgery. The functional MRI test found a noncancerous lesion in my right temporal lobe which appeared to be the cause of my seizures. My case was reviewed by the department’s neurophysiology board. 

The team of doctors concluded that removal of this lesion by surgery had a high probability of ending my lifelong seizures. In December 2006, I had brain surgery at UCLA and miraculously, since then, I have never had another seizure. 

Many people seeking medical care place a blind trust in doctors’ opinions which may lead to substandard treatment. I learned it was imperative to do an independent medical investigation of my condition and search for a doctor who was committed to finding the root cause and best treatment of my seizures.  Not accepting the status quo in medical treatment launched my journey of becoming my own best medical advocate. That journey has no end in sight.