Getting His Life Back: Stephen's Journey Through Epilepsy
Early one summer morning in 2006, 12-year-old Stephen Wood stumbled into his parents’ bedroom, unable to speak. His parents, Sam and Maureen, thought at first that he’d had a stroke. Stephen regained his ability to walk and talk right away, and tests at Cincinnati Children’s Hospital Medical Center were inconclusive. But when Stephen experienced several seizures over the next few days, Maureen made an appointment with Tracy Glauser, MD, a neurologist at Cincinnati Children’s and director of the hospital’s Comprehensive Epilepsy Center.
Dr. Glauser diagnosed Stephen with epilepsy and began working closely with Stephen and his parents to find a combination of medications that would bring the seizures under control. Nothing seemed to work. “It wasn’t uncommon for Stephen to have as many as eight seizures a day,” says Sam. “He had ‘tonic-clonic’ seizures, which involved jerking of the entire body, ‘absence' seizures, where he would sort of zone out, ‘complex partial' seizures involving the right side of his face or mouth, and ‘wandering’ seizures where he would walk without awareness. It was a tough way for Stephen to live.”
An Exhausting Time
Side effects from the anti-seizure medication were also a problem. Some drugs made Stephen so tired that he would fall asleep in the car on the way home from school, take a nap in the afternoon and then go to bed at 9. One drug made him very moody, while another triggered fluid build-up in his eyes. Without immediate treatment at Cincinnati Children’s, he would have lost his sight permanently.
Over time, the seizures and side effects wore Stephen down. “I tried to just be a normal teenager, but it was difficult because I knew I could seize at any time. I worried that people around me would freak out, or that I’d get hurt if I fell,” he says.
Academics were particularly challenging, because the seizures affected Stephen’s short-term memory. “One night, he had a seizure while studying algebra,” recalls Maureen. “Afterward, he couldn’t add 27 plus 15. By the next day he was fine, but I worried about long-term damage to his brain.”
Exploring the Option of Brain Surgery
A year and a half after his first seizure, Stephen’s seizures were becoming more intense and more frequent. “Dr. Glauser told us that the chances of controlling Stephen’s seizures with medication were lessening,” Maureen says. “He had already mentioned the possibility of surgically removing the part of Stephen’s brain that was causing the seizures, and we began to explore that option seriously.”
The Woods were referred to the Epilepsy Surgery Program at Cincinnati Children’s, whose directors include Ki Lee, MD, MS, an epileptologist, and Francesco Mangano, DO, a pediatric neurosurgeon. The physicians met with Sam and Maureen to talk about Stephens’ condition and explain what surgery would involve.
Dr. Mangano explained there would be two surgeries. During the first, he would open up a portion of the skull and place more than 100 electrodes on Stephen’s brain. Afterward, Stephen would stop taking anti-seizure medications, allowing him to have seizures freely. During those seizures, Dr. Lee would use sophisticated technology to gather data about where the seizures were starting. Once Dr. Lee was confident he’d pinpointed the area, Dr. Mangano would perform the surgery to remove that brain tissue.
“Cincinnati Children’s is one of only a few hospitals in the country to offer this type of surgery, and we felt like we were in very good hands,” Sam says. “But for my own peace of mind, I had to do research. I called well-respected epilepsy centers all over the country — at Johns Hopkins Hospital, the Mayo Clinic, UCLA Medical Center and the Cleveland Clinic — and spoke to doctors and nurses, many of whom knew Dr. Lee or Mangano. Everyone advised us to stay put because they felt there was no better place for Stephen.”
"The Only Way to Get my Life Back"
The first surgery was scheduled for Jan. 16, 2009. As it approached, Stephen began to worry but was anxious to put on a good front. “I thought that maybe if I acted courageously my parents would worry less. But deep down I was nervous,” he says. “My dad gave me a chance to back out the day before the first surgery, but I didn’t. I knew that this was the only way to get my life back. At the same time, Dr. Lee had told us that the surgery might only reduce my seizures – not eliminate them. That worried me.”
The first surgery went well, and over the next 24 hours, Stephen had 13 seizures. Dr. Lee determined that Stephen had a major “hot spot” in the left facial motor cortex of his brain, which helps control facial movement. He explained that removing this hot spot would cause Stephen to have weakness in his face, but that the right side of his brain should eventually take over, causing the deficit to disappear.
“That was good news, but I was worried about the second surgery: if Dr. Mangano cut too high or too low, Stephen would lose the use of his arm or leg,” Maureen says. “I also worried that Stephen’s personality would somehow be lost. We wanted the child who went into surgery to be the same one that came out. We gave Stephen another chance to back out the evening before the second surgery, but he made the call to move forward.”
After that surgery, Dr. Lee was optimistic — with good reason, as it turns out: Stephen has been seizure free ever since. ”Now you’d never know Stephen had epilepsy,” Sam says. “Plus, his playful personality, which had been suppressed by the medications, has returned. Through the hands of the surgeons and staff of Cincinnati Children’s, God gave Stephen a second chance. I could not be more thankful.”
No one is happier about the surgery’s success than Stephen himself. “I can honestly say I’m leading a normal life, and that’s probably the greatest treasure I can have,” he says. “Now I’m just like everyone else. I’ve got my driving temps, and I will be getting my driver’s license soon — I never thought that would happen. Thanks to my doctors, I have my life back.”
Support After Surgery
Stephen, shown after his surgery, credits his family with helping him stay strong throughout his journey with epilepsy.
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