April 29, 2019
Specialty care makes the difference for Missouri hairstylist
For 30 years, Karin lived with a secret. Most people around her couldn’t tell, but she experienced frequent seizures from a very young age. Now seizure-free for a year, Karin is living life in a way she once thought impossible. And it’s thanks to the advanced epilepsy care she received at The University of Kansas Health System.
A life of limitations
While growing up in St. Joseph, Missouri, Karin began experiencing complex partial seizures at the age of 6. During each seizure, which lasted at least 30 seconds, she was unaware of her surroundings and began to fidget. She had no memory of the seizures afterward. She was always a quiet person, and the seizure signs were subtle, so her classmates had no idea what was happening.
Over time, Karin’s primary care doctor prescribed many different anti-seizure medications. They didn’t control her seizures. They did cause double vision, drowsiness and dizziness. The combination of frequent seizures and medication side effects made it difficult for Karin to focus in school or make friends.
“I felt like I lived on the sidelines,” she says. “I was ashamed of my seizures, so I rarely talked to other kids. I didn’t do the usual things kids do, like going to sleepovers. I couldn’t play video games because of the flashing lights. I wasn’t allowed to swim.”
By the time she was 12, Karin began having auras. These visual disturbances, including flashing lights and blind spots, let her know a seizure was coming. She began experiencing anxiety as she anticipated seizures. Her doctor added anti-anxiety medication to her daily regimen, though this medication, too, was ineffective.
Karin turned 16 but unlike her peers, she wasn’t allowed to drive. When she graduated from high school, as others were venturing out on their own, Karin continued to live with her parents to ensure her safety. She completed cosmetology school and became a hairstylist.
“This illness took away my freedom,” she says. “Although I was good at my job as a hairstylist, I was always worried about the next seizure, especially while I was at work.”
Early surgery offers no relief
When Karin was 22, her doctor recommended surgery to implant a vagus nerve stimulator (VNS) to reduce or stop seizures. During the surgery, the device was placed under the skin in Karin’s chest and connected to the vagus nerve in her neck. The VNS sent electrical impulses through the vagus nerve to the brain to disrupt seizures.
Unfortunately, the seizures continued.
A specialized team approach provides answers
After her primary doctor moved away, Karin, now 35, decided it was time to find a doctor who specialized in epilepsy. She was familiar with The University of Kansas Health System, home to the only Level 4 Epilepsy Center in the state of Kansas, and searched the health system’s website. She found epileptologist Nancy Hammond, MD, and made an appointment.
“When I met Dr. Hammond, I liked her immediately,” Karin says. “She understood how I felt and helped me understand my condition better than I ever had before.”
To determine whether Karin was a candidate for surgical treatment, Dr. Hammond ordered an EEG to identify the type and origin of Karin’s seizures. Karin was admitted to the hospital for the study. She also had an MRI so the doctor could see the unique structure of her brain.
The care team discovered that Karin’s seizures originated in the left temporal lobe of her brain. Dr. Hammond told Karin that the anxiety she felt before her seizures was actually a different type of seizure. She also diagnosed Karin with brain scarring common in adults whose seizures have been uncontrolled by medication.
Once testing was complete, Dr. Hammond met with an interdisciplinary team of health system specialists, including a neurosurgeon, neuroradiologist and neuropsychologist. Together, these experts decided on the best course of treatment for Karin.
A first attempt at a cure
Neurosurgeon Paul Camarata, MD, met with Karin to discuss options for stopping her seizures. He recommended laser ablation or temporal lobectomy.
“While the lobectomy would likely offer permanent resolution, laser ablation is less invasive with a shorter recovery time,” says Dr. Camarata. “Those advantages appealed to Karin. This is a prime example of the collaboration that occurs regularly between patient and care team to explore the range of options available and together choose the best option for that patient.”
Karin chose laser ablation.
“I always feared surgery on my head,” Karin adds. “Laser ablation seemed like an easier place to start.”
During the surgery, Dr. Camarata first removed the ineffective VNS. Then he drilled a small hole in Karin’s skull that let him reach the targeted tissue with the laser, used to heat and destroy the part of her brain that was causing the seizures. To capture real-time images to guide a complete and successful surgery, Dr. Camarata used the intraoperative MRI, the only one of its kind in the Kansas City area, located directly within the surgical suite.
Karin recovered from the procedure within 6 weeks, but remained seizure-free for only a month. She returned to Dr. Hammond to discuss next steps.
Second surgery ends 30 years of seizures
Though the minimally invasive laser ablation is often effective, it wasn’t enough to resolve Karin’s condition. With Karin’s seizures already recurring, Dr. Hammond suggested the temporal lobectomy would be necessary. This is a surgical procedure to remove the entire temporal lobe, the part of Karin’s brain causing the seizures. Karin agreed, and Dr. Camarata performed the procedure in December 2017.
Karin remained in the hospital for 3 days after surgery. She then was released to recover at home. After a month, Karin began some daily living activities and began working to regain her stamina. Several months later, she returned to work. She has remained seizure-free for more than a year and counting.
Good health brings freedom
Karin continues to see Dr. Hammond every 4 months as they work together to slowly wean Karin off medications they hope she no longer needs.
According to Dr. Hammond, “My hope is that we can get Karin down to a low dose of a single medication over the next year or so. Karin’s prognosis is very good. I expect she’ll remain seizure-free for the rest of her life.”
Today, Karin has her driver’s license and drives where she wants, when she wants. She is working her way off of her medications.
“When I think back to my first meeting with Karin 2 years ago, I see how far she’s come,” says Dr. Hammond. “She has so much more confidence. I’m happy we could pinpoint the cause of her seizures and finally stop them.”
“I am so grateful to Dr. Camarata and Dr. Hammond,” says Karin. “Both of them showed me such compassion, and I felt complete confidence in their recommendations. Thanks to them, I feel a sense of freedom I’ve never had before.”