Teen With Epilepsy Given Chance at a Better Future

Neurosurgeon takes a unique minimally invasive approach to stop debilitating seizures in a teenage boy

For two years, Valerie knew something was off with her son, Jesse.

“Starting at age 15, he would stare off into space, fidget with his fingers, and flare his nostrils at different times during the day. I would say, ‘Jesse, are you OK?’ And he would grunt in response because he couldn’t talk,” says Valerie.

The family started calling them episodes. One time, Jesse was holding a glass of water when he had an episode. He dropped it and it shattered everywhere. Another time he stumbled into his bedroom door, slamming it.

His episodes occurred about eight times a day and lasted 30 to 40 seconds. Their effect went far beyond the moment. Jesse struggled in school and had little interest in extracurricular activities. He was labeled as having a comprehension learning disorder. Over time, he had little motivation and his weight increased.

“We were starting to accept that Jesse’s future didn’t look great and that he might live with me and my husband, Sergio, forever,” Valerie says.

When the seizures first started, Jesse’s local doctor gave him a wearable electroencephalogram (EEG) to check for neurological disorders, but it showed none. They were told that it was likely adolescent issues and he would outgrow them.

Valerie’s gut told her otherwise. She researched online, joined mom chat groups, and sought a second opinion. The next doctor they saw had another possible answer: epilepsy, a common neurological disorder that often begins in childhood. He referred Jesse to the Pediatric Epilepsy Center at Stanford Medicine Children’s Health.

Getting an epilepsy evaluation at Stanford Children’s

“As part of his epilepsy workup, Jesse had a magnetic resonance imaging (MRI) test that revealed an abnormal collection of nerve cells from when his brain formed before birth, called focal cortical dysplasia,” says William Gallentine, DO, chief of Pediatric Neurology. Jesse also received other neuroimaging tests, including a positron emission tomography (PET) scan, to better pinpoint his abnormal brain tissue.

“Everybody made a big deal of my seizures, but they never felt like a big deal to me,” says Jesse. “When they happened, I didn’t even realize it sometimes. It was like I wasn’t there, and then I would get a weird tingly feeling and come back to normal. It was a confusing time for me.”

Jesse was given seizure medication. The seizures continued, so his doctors tried a different medication. Again, no luck. “About 20% to 30% of epilepsy patients do not respond to medications, so we considered surgery, which offers a real chance at a cure,” Dr. Gallentine says.

Deciding to undergo brain surgery to cure epilepsy

It’s a big deal to consider brain surgery as a treatment for epilepsy. People are afraid that they won’t be the same afterward, that they will lose abilities, or that it will be painful. Studies show that the median time between epilepsy diagnosis and surgery is 16 years. Had Jesse waited that long, he would have been in his 30s and would have missed his chance to step into a better future as a young man.

“The prospect of brain surgery is not taken lightly,” says H. Westley Phillips, MD, an outstanding neurosurgeon who specializes in surgery for epilepsy. “It took a lot of bravery and courage from both Jesse and his family, and they didn’t hesitate.”

The care team was surprised by how quickly the family got on board. But the family was ready, having endured a few years of seizures and no answers. “Jesse, at 16 years old, made the decision, and his parents were very supportive. I think he came to the conclusion that he wasn’t going to let epilepsy get in the way of what he wanted to do in life,” Dr. Gallentine says.

Making a surgical plan for epilepsy

Dr. Phillips compares finding the exact location of where seizures originate in the brain to a crime scene investigation. “Like detectives, the epilepsy team stacks circumstantial evidence via noninvasive and minimally invasive tests to implicate the area of the brain causing seizures,” he says.

While Jesse was in the hospital, doctors placed electrodes on his scalp to record his electrical brain activity. Luckily, the location of seizure activity matched what doctors were seeing on Jesse’s neuroimaging tests—they were coming from a single location. This boded well for surgery success.

Next, the team of multispecialty epilepsy experts performed a stereo electroencephalogram (sEEG), where Dr. Phillips implanted a number of tiny electrodes into Jesse’s brain.

“This helped us map out more precisely where the abnormal activity was occurring and empowered us to make a targeted surgical plan for what brain tissue to remove safely, without harming nearby brain tissue,” Dr. Gallentine says. Dr. Phillips compares the advanced test to putting a camera in a bank vault and waiting for a crime to occur to accurately pinpoint the epicenter of seizures.

In many cases, seizure activity stems from brain tissue that is not functioning normally, so removing it does not affect how the brain works; it just stops the random, damaging electrical signals from occurring and impacting the normal functioning brain.

“That first surgery was crazy. Jesse had 10 metal rods in his head,” Valerie says. “Soon after, he was sitting up playing video games with his brother, Owen, and eating! I was so surprised he was OK.”

The Pediatric Epilepsy Center at Stanford Children’s is accredited by the National Association of Epilepsy Centers as a level 4 epilepsy center, meaning it has a large multispecialty epilepsy team, consisting of pediatric epileptologists (neurologists who specialize in epilepsy), neurosurgeons, neuroradiologists, and neuropsychologists.

Every time an epilepsy surgery is considered, these experts come together to provide input on the care plan. “We reviewed all of the data we collected to make sure we had the best, safest treatment plan possible for Jesse,” says Ann Hyslop Segeren, MD, pediatric epileptologist.

For the next seven days, Jesse stayed at the hospital with the electrodes in his brain as he awaited the main surgery to remove the damaged brain tissue, or lesion.

A unique, minimally invasive epilepsy surgery

There are several surgical approaches a neurosurgeon can take to access the abnormal area of the brain that is misfiring. There’s a craniotomy, which involves removing a section of the skull to expose the brain for surgery, and various minimally invasive approaches using endoscopes through the sinus area, the cerebellum, and the eye socket.

“Given that the location of the lesion was somewhat challenging, with important brain areas nearby, I took a somewhat unique approach where I went through a small incision just above Jesse’s eye in the eyebrow to get direct access to the abnormal tissue,” Dr. Phillips says. While neurosurgeons use this supraorbital craniotomy approach for a variety of reasons, it is not commonly used for epilepsy.

For Jesse, this minimally invasive approach meant a smaller incision with less scarring and a faster recovery. Even more unique, Dr. Phillips and the team took a novel approach of leaving the electrodes in Jesse’s skull during surgery to serve as anatomical landmarks providing instant evidence that they were able to stop the abnormal signals being sent throughout Jesse’s brain. These, along with other advanced surgical tools, such as stealth neuro-navigation and interoperative MRI, ensured that Dr. Phillips took out only the seizure-causing brain tissue and not a fraction more. Dr. Hyslop supported Dr. Phillips by performing an EEG during the surgery to help him see the borders of the area to remove. “We work together as one team from the beginning of the care journey to the end to make sure that we provide the best care possible for our patients,” Dr. Hyslop says.

On the day of the surgery, Dr. Phillips surprised Jesse by wearing the same shoes that Jesse had for good luck. “At Stanford Children’s it was the little things,” Valerie says. “The fact that Dr. Phillips got that my teen needed that connection was so meaningful.”

As with every family, Jesse’s was on pins and needles during the surgery. Finally, Dr. Phillips came and told Valerie and his dad, Serfio, what they needed to hear: Jesse did great.

After the surgery, Jesse stayed just one night in the hospital. “I honestly didn’t feel any pain from the surgery. I was shocked. I thought I would at least feel tired, but I felt perfectly fine,” he says.

“We saw a big difference in Jesse’s personality,” Valerie says. “It was like a switch was finally turned on and he was there.”

Stepping with confidence into his future

Jesse didn’t waste a single minute starting his new life after epilepsy. The seizures were gone, and he had newfound energy to do everything he’d missed during his seizure years.

“The first thing I did was start going to the gym every single day. It was so freeing, and it just felt good. I lost over 60 pounds,” Jesse says.

He started engaging fully in school and friendships, and enjoyed his senior year of high school. While he used to miss school frequently, he only missed two days his senior year.

“Jesse didn’t want to miss out on anything. He was on top of his assignments, his comprehension was good, and he was even trying out for sports—things he had never done before,” Valerie says. “He was a brand-new Jesse.”

Today, Jesse is at San Francisco State University as a freshman. He is living in a dorm, enjoying his classes, and exploring his career options.

“I was so sad when he was suffering, and now I’m so happy he could move out for college and live his life. It is all you want as a parent,” Valerie says. “Dr. Phillips and the epilepsy team saved Jesse’s life. Their care was a 10 out of 10. My family will now only go to Stanford.”

It has been over a year since the surgery and Jesse is still seizure-free, which likely indicates a cure. He doesn’t worry about seizures anymore.

“I am so different now. I’m motivated and I have confidence in everything I do,” he says.

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