Epilepsy: after two decades, musician is seizure-free
After living with epilepsy for 20 years, Jeff Schulz can once again get on a stage to sing without worrying about experiencing a seizure during his performances. For Jeff, a Des Moines native, the successful resection of his right temporal lobe has left him seizure-free for the first time in more than two decades. Neurologists and neurosurgeons at the University of Iowa say there are many Iowans living with epilepsy who are candidates for the same type of surgery.
“If a person has tried two different anticonvulsant medications and they are still having seizures, he or she should talk to his or her doctor about being evaluated at a specialized epilepsy center,” says A. LeBron Paige, MD, who was Jeff’s neurologist at UI. “There have been significant advances in epilepsy treatments, including surgery, and there are a lot of Iowans out there who could be helped.”
Jeff’s love of music goes back to his days at Hoover High School, where he played trumpet and sang in a choir.
“I graduated from Hoover in 1989 and went to the University of Northern Iowa as a trumpet major. I thought seriously about being a trumpet teacher, but I realized during my first year that singing was my passion,” Jeff says. “I graduated from UNI with a degree in voice, and I considered being a music pastor.”
Jeff traces his epilepsy to a trampoline accident in the summer of 1989. He was with the youth group from his church, headed to a mission in Mexico. During an overnight stay in Brownsville, TX, he came upon the trampoline.
“I landed my first backflip perfectly,” says Jeff, who had taken gymnastics lessons after graduating high school. “My friends were cheering, so I tried another. I only made it halfway around and landed on my head. My neck cracked all the way down my back and I couldn’t breathe for a while. Other than feeling stiff and sore for a few days, I seemed fine.”
Four years later, during his senior voice recital at UNI, Jeff experienced his first seizure, which he didn’t realize was epilepsy. After he moved down to North Carolina in August 1996, he began to experience the blackout spells more frequently and realized that there was indeed a problem.
“One Sunday after church, I was on my way to a restaurant to meet some people. All of sudden, I found myself headed toward a light pole in a funeral home parking lot. I told my friends about this and they directed me to a lady in the choir who was dealing with similar issues. She gave me the name of her neurologist, who diagnosed the epilepsy and put me on medicine. It worked for a while, but then the seizures started breaking through again.”
In the next decade, Jeff’s seizures became more frequent, and they occurred at inopportune times. “I might be up on stage performing and suddenly stop what I was doing and just stand there staring into space for a short time, or I might go wandering off somewhere to hide,” Jeff says. “And unfortunately some of my seizures occurred while I was driving my car, and I wrecked several cars, which caused my car insurance to skyrocket.
In May 2012, after he had had moved back to Iowa from North Carolina, Jeff had a seizure that “led to my victory over epilepsy.
“I had a seizure going over a bridge and drove into a ditch, actually weaving my way down the slope so that the car did not flip. I was totally unaware of what was going on due to the seizure and remember nothing other than coming to at the bottom of that steep incline unscathed.
“That whole experience prompted a guy at my church to suggest that I go to the University of Iowa Epilepsy Clinic to be checked out and maybe have surgery. He said his uncle had had a surgery there 27 years earlier that had ended his seizures permanently, and my friend thought they might be able to help me as well. I figured I had nothing to lose and pursued his lead.”
Jeff was admitted to the UI’s Epilepsy Monitoring Unit, which is Iowa’s only such facility. During his stay there, Dr. Paige pinpointed the right temporal lobe as the location of the seizures, which made Jeff a candidate for an operation called a temporal lobectomy, removal of the tip of the temporal lobe of the brain.
“Dr. Matt Howard was my neurosurgeon,” Jeff says. “I went into anaphylactic shock right after the surgery, which caused my windpipe to swell shut and threw me into a grand mal seizure. My surgical team got everything running again, and I have remained seizure-free ever since.”
He had the surgery on March 26, 2013–20 years after his first episode. “It’s not uncommon for people with temporal-lobe epilepsy to go decades before they have surgery,” says Mark Granner, MD, the head of the UI Epilepsy Monitoring Unit. “In fact, a paper came out a few years ago that said the average time was 18 years between the first episode and surgery. We’re trying to reduce that time by educating physicians and patients about the options.”
The surgery changed Jeff Schulz’s life significantly. “I can make music! I can travel with singing groups! I can have a driver’s license again!”
For Ellen Paul, RN, nurse coordinator in the UI Epilepsy Clinic, one of the many rewarding aspects of her job is when a former patient comes back to show off his or her driver’s license.
“Not being able to drive and work are some of the hardest parts of having epilepsy,” she says. “When they come back here, seizure free and driving again, they are so incredibly happy to regain something most of us take for granted. That’s when I really know what we’re doing is helping people lead better lives.”
–Winter 2014-15