Seizure-Free for Six Years, Patient Credits Barrow Epilepsy Center

Marissa Amaya Ochoa ran her fingers over the scar on the back of her head as she tried to recall how she went from relaxing at home to needing her scalp stapled in an emergency room.

“I think I was just sitting down watching TV when I felt a seizure coming on,” she said. “I forgot what I was trying to do, but I got up and had one and hit my head on the corner of the TV stand.”

Marissa lost consciousness and awoke to find her head throbbing and bleeding. Her parents, whom she lived with at the time, panicked at the sight of Marissa’s head injury. The seizure, however, was nothing new. Marissa has had more seizures in her lifetime than she can count.

The 32-year-old bears another, more recent scar on her head, though—this one from undergoing epilepsy surgery at Barrow Neurological Institute. Thanks to the procedure and the expert diagnosis and care of neurologist Courtney Schusse, MD, in the Barrow Epilepsy Center, Marissa marked six years seizure-free this past February.

“I have never had a doctor who took that much interest in my case like Dr. Schusse did,” Marissa said. “For that, I really appreciate her.”

The Barrow Difference Begins With an Expert Diagnosis

By the time Marissa met with Dr. Schusse, she had tried numerous medications with little success. She was experiencing up to three seizures per month, often triggered by the hormonal changes in her menstrual cycle, known as catamenial seizures.

“For a long time while living in California, I didn’t get the help I needed,” Marissa said. “My doctors would just say, ‘Here’s some medication; take it and let me know.’”

After Marissa moved to Phoenix in 2015 with her family, she came across Barrow Neurological Institute in her search for an epilepsy specialist. She felt drawn to the institution because of its specialized focus on the neurosciences and further encouraged by positive reviews she read online.

“I have never had a doctor who took that much interest in my case like Dr. Schusse did. For that, I really appreciate her.”

-Marissa Amaya Ochoa, Barrow Epilepsy Center Patient

While taking Marissa’s medical history, Dr. Schusse noted signs of focal seizures, in which the abnormal electrical activity begins in just one area of the brain. Dr. Schusse suspected that area was one of the temporal lobes, which sit behind the temples on each side of the head.

“With temporal lobe seizures, people can have symptoms like déjà vu, staring episodes, and odd behaviors like lip-smacking, called automatisms,” said Dr. Schusse. “So, asking a patient or their family exactly what they do during a seizure can help you identify possible focal seizures and tailor your workup.”

Surgery in Mind

Dr. Schusse said many patients come to the Barrow Epilepsy Center with the belief that they have no treatment options besides medication. “But if these patients have indications that they have focal seizures, it opens up the possibility of targeted epilepsy surgery, including resection of the area that’s causing the seizures, which can in some cases be curative of the epilepsy,” she explained. “I remember saying to Marissa, ‘If surgery were an option for you, is it something you’d be interested in learning more about?’”

Marissa initially felt nervous about the idea of brain surgery. Would she have her entire head shaved? Would she survive the procedure? Didn’t she need the part of her brain that the surgeon would remove?

But after conversations with her medical team, Marissa felt confident in the safety of the procedure and hopeful about the potential outcome. Plus, to her relief, she learned she’d only need her hair cut at the incision site.

“I was just so frustrated with having epilepsy all my life,” Marissa said. Even if surgery didn’t eliminate her seizures completely, she welcomed the possibility of any reduction in seizure frequency.

The Weight of Living With Uncontrolled Epilepsy

Epilepsy runs in Marissa’s family, and she had her first seizure as a baby. Seizures come in many types but generally consist of bursts of abnormal electrical activity between brain cells. Epilepsy is defined by spontaneous, repeated seizures.

Courtney Schusse, MD
Courtney Schusse, MD, Neurologist, Barrow Epilepsy Center

For many people, the word “seizure” conjures an image of a person falling to the ground with full-body muscle stiffening followed by rapid and rhythmic jerking, but Marissa has only had two of these tonic-clonic seizures—formerly known as grand mal seizures—in her lifetime.

Marissa’s seizures usually begin with a feeling of panic. That’s her aura, which she feels fortunate to have, as not everyone with epilepsy gets a warning sign before a seizure strikes. Then come symptoms like slobbering and a blank stare. “It’s kind of like I’m frozen,” Marissa explained.

Although her seizures usually last less than a minute, they can pose serious risks to her safety or, at the very least, derail her day.

Safety considerations for people with uncontrolled seizures can include limitations on recreational activities and even everyday activities, like driving and bathing. Whether a person sustains an injury during a seizure or not, they can feel the effects for hours or days. This recovery period, known as the “post-ictal” phase, can include symptoms like headaches, memory loss, confusion, nausea, and drowsiness.

“It used to take all my energy,” Marissa said of her seizures. “I literally needed to go take a nap.”

Fighting Against Stigma and Stereotypes

For many people with epilepsy, living with the condition not only brings safety concerns and daily inconveniences but also carries a social stigma. “I did go through a lot of bullying in elementary, middle, and high school,” Marissa recalled.

Throughout her childhood and adolescence, she tried to keep her diagnosis a secret from her peers, but her epilepsy would eventually reveal itself. “I would basically have a seizure in class, and everybody would go, ‘That’s the weird girl,’” she said. Although she had friends who stood up for her, she opted to complete her high school education at home after her freshman year.

Entering the dating scene proved complicated, too. While Marissa lived with her parents and relied on them for transportation, she maintained as much independence as possible, which included working and contributing to household expenses. Still, she faced a misconception that she was searching for a caregiver rather than a partner. “Everybody saw me as a burden,” she said.

Marissa also dreaded having seizures in public, feeling embarrassed by the pandemonium that would often follow. “I would wake up out of it with a paramedic next to me, taking my blood pressure, people panicking, and I’d be like, ‘Oh my God, there was no need for that,’” she said.

Believing in a Better Outcome Through Surgery

On Dec. 29, 2016, with her parents’ blessing, Marissa had a right temporal lobectomy at Barrow. To ensure it was safe to remove a large portion of her temporal lobe, she underwent a thorough presurgical evaluation.

Barrow Epilepsy Center patient Marissa Amaya Ochoa with her parents at an Epilepsy Foundation Walk to End Epilepsy in Phoenix. They are all dressed in purple, the color of epilepsy awareness.
Marissa at the Epilepsy Foundation’s Walk to End Epilepsy in Phoenix with her parents.

Because the temporal lobe—specifically a small, curved structure of the lobe known as the hippocampus—plays a role in memory, Marissa underwent a Wada test performed by a neuropsychologist at Barrow. The Wada test can help determine which side of a person’s brain is dominant for their memory and language functions. It involves putting half the brain “to sleep” with medication and then asking the patient to speak and perform memory tasks.

Using these results, the medical team will counsel patients on the impact the surgery could have on their memory and language functions. “It’s a little bit difficult sometimes because ongoing seizures can affect memory, so you have to weigh the possibility of getting seizures under control, versus how much memory might be lost from removing the hippocampus,” Dr. Schusse said.

Marissa said she’s wrestled with memory and comprehension issues for much of her life because of her epilepsy. “I always struggled in subjects like English and reading,” she explained. “I was never good at that, and now I know why.”

Fewer Medications, More Independence

For a couple of weeks after surgery, Marissa’s head ached and felt heavy. Overall though, her recovery went more smoothly than she expected. Having worked since age 16, Marissa quickly grew bored with her newfound free time during recovery and returned to her retail job about a month after the procedure.

Marissa had two seizures within about a year of her surgery, which is likely due to a small piece of the hippocampus left behind. “We talked about going back in and taking that out,” Dr. Schusse said. “Marissa weighed the pros and cons and didn’t want to have any additional surgery.”

Because of that, Marissa will likely remain on some medication, but she’s taking much less now than before. Under Dr. Schusse’s guidance, Marissa felt ready to gradually decrease her medication after reaching the five-year seizure-free mark. “Being on them since I was little, it’s scary to let go,” she explained. “Because that’s all I know is: Take your medicine.”

Anti-seizure medications can have various side effects, and Marissa is particularly concerned about the evidence associating these medications with loss of bone density. Expressing an interest in having children someday, Marissa is also mindful that taking certain anti-seizure medications during pregnancy can affect a baby’s development.

Today, Marissa is able to drive and live alone. She currently rents an apartment with her sister and works as a human resources specialist for a major company. “She’s doing a lot of things independently that, I think, she didn’t expect to be a possibility for her,” Dr. Schusse said.

Marissa has noticed a slight worsening of her memory and comprehension since the surgery. But while she acknowledges that loss, she feels grateful for everything she’s gained. It’s a sentiment she shares with other patients in her support group at Barrow who are considering epilepsy surgery.

“I tell them, ‘The doctors here are amazing; they know what they’re doing. You have a chance to get your life back,” Marissa said.

‘I Owe Her My Life’

Supporting others with epilepsy, raising awareness about the condition, and dismantling the stigma it carries have become passion projects for Marissa—a significant shift from the days when she tried to hide her diagnosis.

“Epilepsy isn’t put out there much and it’s like, why not? It’s a big thing,” she said. According to the Epilepsy Foundation, one in 26 people will develop epilepsy in their lifetime. It is the fourth most common neurological condition, affecting more than 65 million people worldwide.

Marissa proudly shares her story, participates in an epilepsy support group at Barrow and, clad in festive purple outfits with her family, attends the Epilepsy Foundation’s Walk to End Epilepsy in Phoenix every year.

“It’s been really gratifying to see her desire and joy to give back to others. This is why I love caring for patients with epilepsy. It’s just very rewarding when you can really impact the quality of their lives in such a big way and maybe even change the course of someone’s life.”

-Courtney Schusse, MD, Neurologist, Barrow Epilepsy Center

“It’s been really gratifying to see her desire and joy to give back to others,” said Dr. Schusse. “This is why I love caring for patients with epilepsy. It’s just very rewarding when you can really impact the quality of their lives in such a big way and maybe even change the course of someone’s life.”

Dr. Schusse completed her epilepsy fellowship at Barrow in 2014 and joined the Institute’s faculty shortly after, meaning Marissa was one of her earliest patients as an attending physician. She feels fortunate to have been part of Marissa’s journey for nearly a decade.

The feeling is mutual. “I’m so grateful to have her,” Marissa said. “I owe her my life.”

Top photo courtesy of the Epilepsy Foundation of Arizona – Walk to End Epilepsy 2023

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