I was diagnosed with epilepsy in the early seventies at age six. Back then, there were about three commonly used anti-seizure medications (ASMs) and imaging tests like MRIs were not accessible. I lived in New York City, which has many well-resourced hospitals but the only diagnostic test available was the outmoded electroencephalograph, or EEG that recorded brain wave activity by attaching electrodes to the scalp. This was the old-fashioned EEG, where the technologists used thick glue to paste the electrodes onto my head, which was a nightmare to get out of my untamed curls. The EEG results recorded abnormal activity with no obvious cause, which is known as idiopathic epilepsy. By the time I was ten, I’d tried all three ASM’s. They didn’t fully control my seizures, so I was one of the 30% of people with epilepsy who had refractory seizures. The brain surgeries I had in 2014 ultimately put a stop to the seizures: The neurosurgeon excised the mischievous seizure-triggering section of my brain. There were some glitches, resulting in a second emergency brain surgery, a harrowing journey I describe in my book, Seizing Control.
Fast forward to 2024: I’ve been seizure-free for almost ten years. Meanwhile, in some parts of the world the technology, surgical techniques and available diagnostics to children is soaring. In August I read about this amazing development: Dr. Eleonora Tamilia director of the Epilepsy Monitoring Unit Signal and Data Science Program at Boston Children’s Hospital Epilepsy Center leads a team that developed computational tools.The tools provide neurosurgery patients a simple method to pinpoint the precise area of the brain generating the seizures.
Typically, drug-resistant epilepsy patients do as I did, stay in-patient at a hospital, and undergo a seven-day invasive EEG monitoring process. The new computational tools being piloted by Dr. Tamilia’s team are noninvasive and more detailed. The tools combine scalp EEG readings with MRI data and use machine learning to identify the seizure-triggering brain regions. Because the technique is brief and less invasive, it can be used soon after epilepsy is diagnosed. Consequently, some children with drug-resistant epilepsy might have a surgical treatment option sooner rather than later, allowing them to avoid some of epilepsy’s challenges and neuro-developmental impacts.
In June, British teenager Oran Knowlson became the first person in the world fitted with a brain implant that stopped his seizures. Prior to surgery, he had hundreds of seizures a day. Now Oran’s neuro-stimulator sits under his skull and sends electrical signals into his brain that reduce his daytime seizures by 80%. His mother Justine said that her son had been happier, chattier and had a much better life quality since receiving the device. “The future looks hopeful, which I wouldn’t have dreamed of saying six months ago,” she said.
In December, Scottish teenager Angus Bain underwent an MRI-guided Laser Interstitial Thermal Therapy, or LITT, a minimally invasive surgery with a relatively short recovery time. During the procedure, the seizure-triggering section of his brain was removed by laser. Prior to surgery, he had seizures at least weekly. Post-surgery he was seizure-free. “Being able to have this surgery is amazing. I think it could change my life forever by making me able to do the things I haven’t been able to do,” Angus said. These stories make me cheer with joy for children diagnosed with epilepsy today. Admittedly, I also salivate with jealousy when I imagine what my life could have been like had the technology been available when I was a child. Or even ten years ago, when I had my temporal lobectomy. Jealousy is not productive, so I stay focused on the delight.
But my joy was tempered a bit when I read last week’s story about the Medanta Hospital’s new pediatric Epilepsy Center opening in Gurgaon, India, about 15 minutes from New Delhi. Officials said the facility will provide long-term care for younger patients offering expert evaluations by pediatric neurologists, EEG, EEG video monitoring, 3 Tesla MRI, and genetic testing. Treatment options include medication management, ketogenic diet therapy, and surgical interventions for drug resistant cases. While this new pediatric Epilepsy Center is a great resource, I was disappointed to see the 3 Tesla MRI listed. The 3 Tesla MRI is what my neurosurgeon had access to in 2014. As I wrote in my January blog, the 3T MRI is less than half as strong as the 7T MRI, which is currently available in many Epilepsy Centers. Given that Medanta Hospital only has a 3T MRI, chances are high that the Epilepsy Center won’t have access to the LITT technology Angus Bain accessed in Scotland, or the brain implant Oran Knowlson received in London, or the recently developed Boston Children’s Hospital computational tools developed by Dr. Tamilia.
Based on the article’s description, the children treated at Medanta’s Epilepsy Center will likely have access to 2014 technology for now. Gurgaon, India’s technology appears to be ten years behind that of London, England and Fife, Scotland and the health inequities between developed and developing countries are notable. While the Medanta Epilepsy Center’s equipment is far better than what was available when I was a child, given the glitches I faced during my own surgery, I hope Medanta can upgrade their Epilepsy Center’s technology soon.
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