Teen Seizure Free For The First Time in 16 Years Following Brain Surgery
Seventeen-year-old Virginia Cooper is patiently awaiting acceptance into her dream college. This, a long-awaited hope for her family and neurologist, after 16 years of suffering from seizures.
“Virginia has intractable localization related epilepsy or drug-resistant epilepsy. If we break that down, that means she has epilepsy that has been uncontrolled by two or more medications,” said M. Scott Perry, M.D., medical director of Neurology and the Genetic Epilepsy Clinic at Cook Children’s. “’Localization related’ meaning it arises from one area of the brain, as opposed to the entire brain at one time.”
In early December, Virginia had minimally invasive brain surgery. It’s been nearly three weeks and for the first time in 16 years, she’s seizure free.
“We did laser thermal ablation. This means we used electrodes to pinpoint the problem area and used a laser fiber to burn that area of the brain,” Dr. Perry explained. “She went home the next day. Now we enter the patient waiting game to see how it’s going to go.”
Though epilepsy is common to children, Virginia’s story is unique. She says she was in 4th grade when she realized how much impact seizures had on her life. She began looking down on herself and looking at herself differently. She felt as if she wasn’t the same as her peers in a bad way.“
When I was younger, I definitely hid a lot more, because I was afraid that people would look at me a lot differently. I only really told people if they were coming to sleepover. As I got older, I told more people, mainly my friends and I began accepting it more,” Virginia said.
As years passed, things became normal to her. She played field hockey with her friends and was able to do most of the same things as her peers. It wasn’t until her sophomore year in high school when the “different” feelings came up again, because her friends were beginning to drive.
“I really noticed it again when everyone was getting their permits. But when I was a junior, things were back to normal again because driving was routine and not everyone was excited about it anymore,” Virginia said.
Virginia’s mom, Kate, has been her advocate every step of the way. She said when Virginia first started having seizures, she thought she was just making a funny face. Her dad was holding her the next day, and it happened again. When they took her to the doctor, Virginia had a seizure in front of them and the neurologist. It was then that they started on a path to find out the cause.
“It’s very hard to watch a child suffer from a disease that is tragically underfunded and tragically understudied, and under researched and misunderstood,” Kate said.
Over the years, Virginia has failed 12 drugs. Medical professionals say if an epilepsy patient fails two drugs, it’s unlikely that any others will work. She has seen several doctors in her home state of Virginia and across the country. Doctors have tried several things with her case and could never pinpoint where the seizures were coming from.
Virginia’s mother refused to allow her disease to hinder her from living a full life and doing everything her siblings could do. Kate says Virginia has traveled with her family extensively. She’s gone paragliding in South Africa and swimming with manta rays in Hawaii. She ran cross country and is even on a competitive rock climbing team. All things they knew were a risk, but a risk they were willing to take.
“I would rather have a child with a broken arm than a broken spirit,” Kate said.
While searching Twitter in the fall of 2019, Kate came across Dr. Perry’s professional profile where he regularly posts about advancements in treatment for epilepsy. She decided to seek his opinion. After securing an appointment, mother and daughter flew to Texas. In her initial appointments, Dr. Perry ran tests to see Virginia’s seizures for himself.
“From the beginning, it felt like a very collaborative relationship and a very transparent relationship, and that just stood out to me from other patient and caregiver experiences that we’ve had in the past,” Kate said. “I felt like everyone was familiar with her case history, everyone knew why we were there, everyone knew what we were hoping for. Again, not overpromising and not being overly optimistic, but really understanding our goals and what we had already tried."
Virginia agrees that Cook Children’s was different from other appointments she’d been to. She was happy to finally have doctors that focused solely on her case.
“At Cook Children’s, they didn’t compare my case to anyone else, but looked at it as a singular case. I think that was the difference and they also had a more positive outlook. All of the doctors were good at explaining things in a way that I could understand them, but also not making me feel dumb,” Virginia said.
After observations, running tests, and reviewing hundreds of pages of paperwork from Virginia’s doctors over the years, Dr. Perry was confident that he’d pinpointed where the seizures were coming from. He then recommended her for epilepsy surgery. Virginia was able to have her surgery and fly home two days later.
While visiting Cook Children’s, Kate and Virginia also met Cynthia Keator, M.D., medical director of the Epilepsy Monitoring Unit at Cook Children’s who made an impact on the Cooper family. Kate says the moment she met Dr. Keator, she felt immediately encouraged and appreciated how transparent she was about what she was seeing in Virginia.
Dr. Keator said she knew from the minute she saw the data on Virginia’s EEG that she could help her, and as a doctor that is always the best feeling.
“There is something about teenagers in general and just knowing that they’ve got the rest of their life ahead of them. You’re excited to get to their breakthrough and get them better, so they can start to have an independent life,” Dr. Keator said.
Since returning home, Virginia has gone back to school to complete her senior year and study for the ACT exam. While she was at Cook Children’s waiting for her surgery, she was excited to receive two college acceptance letters. She will soon apply for her top choice, McGill University, in Montreal where she hopes to attend next year.
Virginia says it still hasn’t hit her that she’s had a surgery that could potentially change her life. She says the best part is the hope of having a normal college experience.
“If it works, I don’t have to tell my professors about it, and my roommates, or my friends and have that complicate my whole experience too,” Virginia said.
Dr. Perry hopes the surgery was all Virginia needs to live a normal life and that her story is a testament to why epilepsy surgery should be considered more often.
“People don’t pursue epilepsy surgery, despite it being the one thing we can do for epilepsy where we might be able to cure it and get you off of medication,” he said. “Epilepsy surgery is vastly underutilized.”
Dr. Perry’s ultimate goal is for her to be seizure free, off of medication, and living happily ever after.
Kate and Virginia both agree that having a support system while dealing with epilepsy is important. Having people who are there to listen with no judgement and willing to jump in when you need them most has been helpful to them both.
“It’s really important to find one or two super close friends who you can talk through everything with and never feel insecure when talking to them,” Virginia said. “It really helps.”
As a mother who’s dealt with epilepsy for 16 years, Kate has three pieces of advice that she hopes will help other parents:
1. Build your support group. Seek out people who might be going through something similar and that you can lean on.
2. Take care of yourself. Do things for yourself and practice self-care.
3. Listen to your gut. Don’t be afraid to seek guidance from other physicians who specialize in your child’s disorder.
Virginia has one piece of advice for anyone dealing with epilepsy.
“Never to doubt yourself. Just because sometimes your life is a little bit harder for you than for others doesn’t mean you can’t do the exact same things as they can or get as far as, or further in life.”
Learn More about Cook Children’s Epilepsy Program
Cook Children's Comprehensive Epilepsy Program is one of the leading and most advanced pediatric epilepsy programs in the country. The National Association of Epilepsy Centers recognizes Cook Children's Comprehensive Epilepsy Program as a Level 4 Pediatric Epilepsy Center. Level 4 epilepsy centers have the professional expertise and facilities to provide the highest level medical and surgical evaluation and treatment for patients with complex epilepsy.
Our program coordinates the skills of a highly specialized team of experts across neurosciences and Cook Children's Health Care System. This team is made up of epileptologists, neurologists, neurosurgeons, neuropsychologists, nurse specialists, EEG technologists, nutritionists, nurse educators, social workers and Child Life specialists, all working together to ensure children with epilepsy receive the most accurate diagnosis and advanced treatment available.
More than 13,000 infants and children with seizures are treated at Cook Children’s each year. Annually, we perform more than 6,000 EEGs and 40-50 epilepsy surgeries, making Cook Children's Comprehensive Epilepsy Program one of the busiest pediatric epilepsy centers in the nation. And with specialized diagnostic tools, like our MEG, the newest generation of advanced imaging technology is now available to even our youngest patients.
For more information, visit our website.