May 28, 2019
Stephan Stiles barely remembers life before the headaches and night terrors. When he was about 11, living in Leavenworth, Kansas, the headaches began. He started having episodes in the middle of the night that caused him to shake and make sounds that became louder and louder. Stephan had no memory of the episodes afterward.
Concerned, his parents took him to a doctor who diagnosed Stephan with night terrors. The doctor prescribed 2 anti-seizure medications to help control them. The medications had little effect, and the night terrors continued.
Stephan grew into a 14-year-old high school freshman and continued to experience night terrors. For the first time, he had an episode during the school day. His teacher, concerned that perhaps he had taken drugs, called 911. When Stephan regained consciousness, he was at a leading Kansas City children's hospital.
"It was such a strange experience," explains Stephan. "One minute I was sitting in class, and the next thing I knew, I was waking up in a hospital. I had no idea what had happened."
This is when Stephan learned he had epilepsy and the night terrors were actually a type of seizure. He recalls having hundreds of seizures over the next 7 days. His new doctor increased the dosage of the medications, but Stephan continued to have seizures.
Not long after he turned 18, Stephan and his family moved from Kansas to Texas. His care was temporarily interrupted. After graduating from high school, he held various jobs in fast food and retail, but he found it difficult to concentrate and remember what he was doing.
About 18 months later, Stephan's family returned to Kansas, and Stephan sought care from a new neurologist. To try to help Stephan, his new doctor prescribed a third anti-seizure medication, but the seizures continued.
Finding a path toward healing
After 2 more years of continued uncontrolled seizures, Stephan's neurologist, unable to help him, suggested Stephan seek care at The University of Kansas Health System, home to the only Level 4 Epilepsy Center in the state of Kansas. He referred Stephan to epileptologist Utku Uysal, MD. When Stephan had his first appointment with Dr. Uysal, a neurologist with specialty training and a dedicated focus on epilepsy care, he immediately felt at ease.
According to Stephan, "Dr. Uysal was so easy to talk to, and he understood everything I was experiencing. I learned things about my condition I never knew before."
"The diagnosis of epilepsy was clear after talking with Stephan about his medical history," shares Dr. Uysal. "Because multiple seizure medications had failed to help him, the next step was to evaluate him for surgery. I wanted him to have this option, if possible, because it might be his best chance to live a seizure-free life."
The evaluation involved several steps. Stephan was admitted to The University of Kansas Hospital, where the neurodiagnostic team performed a prolonged EEG, recording seizure activity over the course of a week. The attending epileptologist interpreted the findings. Next, an MRI of Stephan's brain helped Dr. Uysal detect a lesion on the left frontal lobe – the cause of the seizures. Finally, a neuropsychology assessment showed that Stephan was experiencing issues with memory, speech and concentration. These symptoms resulted from the combination of long-term seizures and the side effects of anti-seizure medications. At our Level 4 Epilepsy Center, Stephan received the benefit of the highest levels of specialized care.
Finally a chance for a cure
Dr. Uysal presented these findings to a team of health system specialists in a multidisciplinary conference. The specialists together reviewed the data, each applying unique perspective, and collaboratively agreed Stephan was a candidate for surgery. He was referred to neurosurgeon Paul Camarata, MD.
Stephan met with Dr. Camarata, who explained the recommended surgery to him. Called a frontal lobectomy, the surgery involved removing the affected tissue from the left frontal lobe of the brain where the lesion was found. If successful, it would end the seizures.
Although this was serious news, Stephan took it in stride.
"I was probably the only person in my family who was not seriously worried or even concerned," says Stephan. "I knew this story meant I had a chance at a better life."
In June 2017, Dr. Camarata performed the surgery. During the procedure, the surgical team exposed Stephan's brain and placed electrodes on the lesion that was causing the seizures. Called intraoperative electrocorticography, the technique helped Dr. Camarata ensure he removed all of the abnormal tissue as safely as possible.
True healing begins
According to Dr. Uysal, Stephan tolerated the surgery very well.
"He was very brave going into such a serious surgery," he shares. "And really, he was an ideal patient. He did everything his care team asked him to do."
Just 2 days after his surgery, Stephan returned home. He spent the next 2 months recovering and regaining his strength. By August, he was able to go back to work at his job at a dining facility in Leavenworth. He also was able to begin playing video games and throwing darts with his brother-in-law and 2 nieces again.
Working toward independence
Today, Stephan only experiences occasional headaches. More important, he has had no seizures since his surgery. And freedom from seizures will likely mean much more freedom in Stephan's life in the near future.
According to Stephan, "Although I'm nearly 28, I've never been able to live on my own because of my seizures. I'm still living with family. I hope to live on my own soon. I'm also cleared to drive and look forward to getting my license. These are things I never thought I would be able to do."
Dr. Uysal is also pleased with Stephan's progress.
"Before surgery, in 2016, Stephan's verbal skills were significantly impaired. In a 2018 follow-up evaluation, we saw significant improvement," says Dr. Uysal. "His mother has also reported his reaction time is much faster than before. It's gratifying to see the benefits of eliminating seizures from Stephan's life."
Stephan will continue regular follow-up visits with Dr. Uysal. Together they will work slowly to taper Stephan off his seizure medications. Assuming things go as planned, someday Stephan may need only a single medication or perhaps none at all.
"Although brain surgery is a big deal, it was a very good experience for me. I had the best doctors, who helped me with something I thought I could never get past," says Stephan.