April 02, 2020
For 24 years, Grace Lindsey never knew a day without a seizure. Every time she woke – from a night of sleep or from a nap – she had a seizure. She had 100s of seizures throughout the day, every day. Every day for 24 years.
Her mother, Sheila Gill, describes a lifelong quest for answers and a cure. They talked with doctors and explored epilepsy centers in nearly every U.S. state and even reached out to providers in Canada and Belgium. But none of the diagnoses, medications or treatments brought Grace relief.
"She tried every seizure medication on the market," Sheila says. "Many had negative effects on cognition and social development. She was never seizure-free for more than a day."
Grace also has Asperger syndrome, a developmental disorder on the autism spectrum. This created further challenges as her mother and care providers sought answers for her seizures.
Finally, in 2016, Grace met epileptologist Carol Ulloa, MD, director of the Comprehensive Epilepsy Center at The University of Kansas Health System.
"When I met Grace, I could see how the medications were negatively affecting her," Dr. Ulloa says. "She was having seizures every day, and that was greatly impacting her quality of life as a young woman in her early 20s."
"Grace had had multiple workups at other healthcare facilities and had been told her MRIs were normal," Dr. Ulloa adds. "But based on her history and what I heard from her, I was confident we should do our own testing and explore all possibilities."
Grace's MRI showed a lesion – called a focal cortical dysplasia – in the left occipital lobe of her brain.
"Unfortunately, it's common for epilepsy patients to have many MRIs throughout their lives and for an abnormality to go unnoticed," Dr. Ulloa says. "Often it's because they aren't getting the right MRI sequences or there isn't a neuroradiologist with expertise in epilepsy reading the scans."
The team at our health system's Level 4 Epilepsy Center – the highest accreditation provided by the National Association of Epilepsy Centers – performs MRIs with epilepsy protocol. It ensures the right sequences are performed and the right expertise applied to interpreting the images.
Neuroradiologist John Leever, MD, brought specialty experience in epilepsy to the interpretation of Grace's scans.
"My dedicated fellowship training and certification in neuroradiology and my ability to dedicate 100% of my clinical time to epilepsy care are definitely advantageous in identifying previously unrecognized lesions," Dr. Leever says. "Furthermore, the multidisciplinary team at our Level 4 Epilepsy Center provides me with extraordinary feedback and neuroimaging experience that help us together benefit patients with epilepsy."
The occipital lobe is an uncommon seizure location, so there is little literature available for guidance. But doctors at the health system were able to access documented case series from national sources to determine an effective treatment plan.
A spark of hope
"When we first met with Dr. Ulloa, she listened to Grace's whole story," Sheila says. "She was very personable and empathetic. We'd never had a doctor spend that much time with us at the first visit. Dr. Ulloa valued everything we had to say, and then she did the research."
Based on Grace's imaging results and her history of drug-resistant epilepsy treatment, she appeared to be an ideal candidate for surgery. But first, her care team wanted to know the exact location of the seizures and build a clear understanding of any risks.
"In Grace's case, surgery made sense, but focal cortical dysplasia in the occipital lobe can impact vision function," Dr. Ulloa says. "We never want surgery to cause new problems, so we had some honest discussions about risks versus benefits with surgery for Grace."
Neurosurgeon Jennifer Cheng, MD, performed an initial brain mapping procedure. She placed a flat grid of electrodes over part of Grace's brain to functionally map how removing the focal cortical dysplasia might affect her vision.
"Mapping indicated Grace's surgery could result in vision loss after removing the brain tissue from the occipital lobe," Dr. Cheng says. "We counseled her about the possibility of permanent vision loss. That was extremely scary to contemplate. It was necessary for her to take her time to make the right decision for her."
The combination of imaging guidance and mapping in the operating room helps surgeons plan exactly how much tissue to remove to preserve as much functionality as possible.
"With this condition, the surgery is typically quite successful if we can remove all of the brain tissue affected," Dr. Cheng says.
Living life seizure-free
After much thought, Grace chose to move ahead with surgery. She awoke from the 7½-hour procedure and did not have a seizure. She has had none since.
"I had been praying for 24 years," Sheila says. "I never thought my daughter would be able to wake up without having an immediate seizure."
Grace did have some right-sided vision loss after surgery, but, through consistent therapy, she has regained much of her normal sight. According to Dr. Ulloa, Grace has exceeded expectations in vision recovery. And most important, Grace has remained seizure-free.
"I feel like I've been pulled out of a dark place where I'd been for a long time," Grace says. "I feel better all the way around. I used to have anxiety attacks but now I am less aggravated and less anxious, and my temper is much better."
She's excited about experiencing things many people take for granted, such as 3D movies and virtual reality games that used to trigger seizures. And she hopes to finally learn to drive.
"I think Grace is amazing, but recovery is a work in progress," Dr. Ulloa says. "Life changes dramatically for patients once they no longer have to contend with seizures. Her outlook is extremely bright. Now she can make decisions about how this can impact her life moving forward and lead to greater independence and quality of life."
It's been a journey of more than 2 decades, but Grace and her mom are glad they kept pushing for answers and solutions.
"I would tell other parents to keep exploring and keep advocating for your child," Sheila says. "The more opinions you have, the better decisions you can make about your child's health. I can't say enough good things about our epilepsy treatment team. Dr. Ulloa and Dr. Cheng are patient-centered, family-centered and sincere in their wish to heal people."