Surfer says so long to seizures
Leading-edge treatments turn the tide for epilepsy
February 23, 2017
The last time Corey Phillips went surfing, several years ago, he paddled into the lineup at his favorite spot in Huntington Beach with six of his friends. The Garden Grove native, now 26, had been surfing there since his father taught him to catch waves as a child.
Just before his 21st birthday, though, he had been diagnosed with epilepsy. The diagnosis prompted a friend who worked with a popular wetsuit manufacturer to give Phillips a life jacket that would float him on his back if he fell unconscious, and he always wore it in the water.
That day surfing in Huntington Beach was the first time he truly needed the life jacket. When a grand mal seizure flung him from his board, a friend towed him to shore as he seized, unconscious. Phillips came to on the beach with no memory of what had happened.
“Ever since then, I’ve been scared to go back out,” he says. “I still go to Huntington to watch the waves, but I haven’t surfed in years.”
Yet, Phillips is confident he’ll be back in the water soon, thanks to treatments he has received at the UCI Health Comprehensive Epilepsy Program. The program has a Level 4 designation (the highest level) from the National Association of Epilepsy Centers and is one of the leading facilities in the country for the treatment and research of this debilitating neurological condition.
What is epilepsy?
Epilepsy is a chronic disorder in which a part, or parts, of the brain have recurring abnormal activity that triggers seizures. In the U.S., around 1 percent of the population has epilepsy. Seizures can be mild, causing momentary space-outs, or they can be extreme with minutes-long, unconscious convulsions.
An epilepsy diagnosis can have devastating effects on people’s lives. Seizures can happen daily or multiple times a day, at any moment, making it nearly impossible to work, go to school or live an independent life without the constant fear of crashing a car, drowning in the bathtub or otherwise injuring oneself or others.
There’s also the risk of outright death following a seizure, especially among young adults with uncontrolled seizures. These incidents are called SUDEP (sudden unexpected death in epilepsy), and they appear to result from unusual heart rhythms or breathing problems triggered by the seizures. According to the Epilepsy Foundation, about 1 in 1,000 people with epilepsy die from SUDEP.
“It’s important for family members to closely monitor the person with epilepsy after a seizure,” says Dr. Jack Lin, director of the epilepsy program. “Early physical arousal seems to snap them out of these unusual breathing and heart rhythm patterns.”
A broad range of treatment options
When patients are diagnosed with epilepsy, the first course of treatment is medication. There are dozens of anti-seizure medications depending on the patient and the type and frequency of the seizures, and many patients use more than one to find the best results. But for the 30 percent of people with epilepsy who don’t see results with medication, surgical treatments may be the answer.
“This field is very exciting because there are new devices and new procedures being developed,” says UCI Health neurosurgeon Dr. Sumeet Vadera, who is part of the epilepsy team. “Epilepsy is one of the few disease processes in neurosurgery that we can actually cure. And with the latest advances we can treat even the most difficult cases quite well.”
The Comprehensive Epilepsy Program offers some of the most advanced surgical treatments available, but patients need to have tried at least two medications without results before they can be considered a candidate for surgery.
The two most common surgical treatments for epilepsy that Vadera performs are temporal lobe resection and implantation of intracranial electrodes to locate where the seizures arise. Temporal lobe surgery is the most common because many patients have epilepsy caused by abnormal brain activity in the temporal lobe. This part of the brain affects memory but not motor function, so sections of it can be safely removed without significant risk to the patient, although some patients may have impairment with new memory function.
“The chance of being seizure-free after temporal lobectomy is 70 to 80 percent,” Lin says.
“Many people, even some neurologists, have the wrong idea about what this surgery entails,” Vadera adds. “The benefits far outweigh the risks of surgery. The part of the brain we’re taking out is abnormal, so the goal is to make people better, not worse.”
Phillips was evaluated by UCI Health epileptologist Dr. Lilit Mnatsakanyan, who determined that his seizures originated from the temporal lobe. He underwent temporal lobe surgery twice. The first time, UCI Health neurosurgeon Dr. Frank Hsu, chair of UC Irvine's Department of Neurological Surgery, removed a section of his left temporal lobe. But when Phillips began having seizures again six months later, he had the entire left temporal lobe removed.
“I completely trusted them, and they didn’t give up,” Phillips says of the UCI Health team. “And the results have been amazing. I’ve been seizure-free now for more than eight months.”
Life-changing benefits of new treatments
The results of surgery are frequently life-changing. Alonzo Ramirez, 45, had been plagued with seizures since childhood. He even wore a medical information bracelet instructing bystanders not to call for paramedics should he collapse on the street.
“I would have a seizure at least once a week,” the Santa Ana man says. “By the time the paramedics got me to the hospital, I was OK. I just started signing papers not to take me to the hospital.”
About two years ago, he met Mnatsakanyan, who determined the origins of his seizures and suggested temporal lobe surgery. Vadera performed the operation and told Ramirez his seizures would likely be reduced by at least half. He has not had a seizure since the operation.
“It has changed my life,” Ramirez says. “Now I’m thinking about my future. I would like to get a job and be able to drive. I ride a bike and have been taking buses for 33 years. I’ve been waiting to get a driver’s license since 1979.”
An implant to control seizures
For patients whose seizures originate from two areas of the brain, or if the abnormal activity is in an area that can’t be removed because it would damage motor function or speech, the
NeuroPace® implant is a promising alternative.
“This NeuroPace device was approved by the FDA just three years ago. It’s a battery and a sheet of platinum electrodes that we implant in the skull,” Vadera explains. “We place these electrodes over the seizures, and the device uses an adjustable algorithm to recognize when a seizure is developing. Then it shocks that area of the brain to stop it from propagating. There are no nerve endings in the brain, so people can’t even feel it happening.”
The implant, about the size of a flash drive, contains a remote monitoring device that can send samples of seizure activity back to the doctor for evaluation and to make changes to the system settings for better seizure control. Unlike medications, the effects of the NeuroPace do not wear off.
“The device has different algorithms for pattern detection so we can change the parameters to detect the seizures better,” Lin says. “We’ve found that patients feel a great deal of control over the device. When patients experience seizures, they can mark these events, and there’s RAM storage so they can download the seizure data and send it to us.”
A better understanding of the brain
Of course, before patients undergo brain surgery, there’s a battery of tests to ensure they are good candidates for the procedures. “We’re looking for where the seizures originate and whether they are generalized or focal seizures,” Lin says. “We also need to make sure we have the correct diagnosis.”
These tests range from noninvasive EEG monitoring on the surface of the skull to high-tech brain mapping using probes implanted on — or in — the brain to see which areas light up with abnormal electrical activity during seizures. Patients may spend days in the hospital, with the diagnostic equipment recording their brain activity as seizures occur in order to capture a clear picture of when and where they happen.
One valuable benefit of these tests is the opportunities they provide for neurological research. “These surgical patients have electrodes on the surface and deep inside their brains — something we could never ethically do with research subjects who don’t have a medical need for the implants,” Lin explains. “We can directly record brain-processing activities like emotion, memory and language.”
The Comprehensive Epilepsy Program evaluates more patients than any other in the region, giving researchers like Lin a unique opportunity to work on the leading edge of neuroscience. He currently has a grant from the Department of Defense to decode language from brainwaves in order to produce a prosthetic implant for people who have lost the ability to speak after a traumatic brain injury or stroke. The result could be a device that turns thoughts into words, which is the topic of an upcoming paper Lin will publish in the journal Nature Communications.
“With electrodes over speech areas of the brain, we’ve been able to decode patterns of neurons firing that allow us to extract speech,” Lin says. “In one study we played Pink Floyd to the patients, and when we recorded the brainwaves they played Pink Floyd back to us.”
For Phillips, the benefits of his treatment have been immeasurable. He’s starting to get his old life back after years of not being able to work or go to school.
As for surfing, he’s waiting for a special day to hang 10 at Huntington Beach. “I want to be at least a year seizure-free before I surf again,” Phillips says. “So I told my father that Father’s Day 2017 will be the first time I paddle out. I want my father, my uncles and my friends to all be out there with me.”
Learn more about UCI Health treatments for epilepsy ›
View related story: "Women and epilepsy: closing the knowledge gap" ›
— UCI Health Marketing & Communications
Featured in UCI Health Live Well Magazine Winter 2017