UK: World’s first epilepsy device fitted in boy’s skull

A groundbreaking medical procedure has brought new hope to a young boy with severe epilepsy.

Oran Knowlson, a 13-year-old from Somerset, UK, has become the first patient in the world to trial a revolutionary device implanted in his skull to control seizures. This neurostimulator has significantly reduced his daytime seizures, improving his quality of life.

How does it work?

Epileptic seizures are triggered by abnormal bursts of electrical activity in the brain. The innovative device, named Picostim and created by Amber Therapeutics, emits a constant pulse of current to block or disrupt these abnormal signals.

During an eight-hour surgery in October 2023, led by consultant pediatric neurosurgeon Martin Tisdall at Great Ormond Street Hospital, two electrodes were inserted deep into Oran's brain, reaching the thalamus — a key relay station for neuronal information.

The electrodes were connected to a neurostimulator placed in a gap in Oran's skull, allowing the device to deliver electrical pulses directly to the brain.

Why does it matter?

Oran's mother, Justine, shared with the BBC that her son's epilepsy had drastically affected his life, leading to frequent and severe seizures.

While traditional treatments had limited success, the introduction of the neurostimulator has resulted in an 80% reduction in Oran's daytime seizures — making him more alert and allowing him to enjoy activities like riding lessons.

"He is more alert and with no drop seizures during the day," Justine reported.

The success of this trial opens new possibilities for treating other children with Lennox-Gastaut syndrome and similar treatment-resistant forms of epilepsy.

The context

Oran's condition, Lennox-Gastaut syndrome, is a severe, treatment-resistant form of epilepsy that began affecting him at the age of three. Despite multiple medications and therapies, Oran experienced dozens to hundreds of seizures daily, severely impacting his development and quality of life.

The CADET project — involving Great Ormond Street Hospital, University College London, King's College Hospital, and the University of Oxford — aims to assess the safety and effectiveness of deep brain stimulation for severe epilepsy. The use of a skull-mounted neurostimulator is particularly beneficial for children, reducing potential complications such as infections and device failures associated with chest-implanted neurostimulators.

Seven months post-operation, Oran's improvement is evident. The device, which he recharges daily via wireless headphones, has drastically improved his seizures and quality of life. The future phases of the trial aim to make the neurostimulator responsive to real-time changes in brain activity, potentially blocking seizures as they begin.

"The Great Ormond Street team gave us hope back... now the future looks brighter," said Justine.

Oran's case not only highlights the potential of advanced medical technology in managing severe epilepsy but also offers hope to many families affected by similar conditions.