World First Epilepsy Device Fitted In UK Boy's Skull

In a groundbreaking medical advancement, a young boy with severe epilepsy has become the first in the world to receive a revolutionary device implanted in his skull to manage seizures.

The innovative neurostimulator sends precise electrical signals deep into the brain, significantly reducing Oran Knowlson's daytime seizures by 80%. His mother, Justine, reported that this development has greatly improved his happiness and quality of life.

The surgical procedure was conducted last October as part of a clinical trial at Great Ormond Street Hospital in London. At the time of surgery, Oran, who is now 13, was 12 years old.

Oran, who hails from Somerset, has been battling Lennox-Gastaut syndrome, a form of epilepsy resistant to conventional treatments, since he was three. This condition has subjected him to multiple daily seizures, sometimes numbering in the hundreds.

Justine recounted the immense impact of Oran’s epilepsy on his life when interviewed last autumn: "It has stolen his entire childhood." She described a variety of seizures, from violent shaking and sudden collapses to episodes where Oran would stop breathing, requiring emergency intervention.

In addition to epilepsy, Oran also has autism and ADHD, but Justine emphasized that epilepsy poses the most significant challenge: "He was a bright three-year-old, but his seizures rapidly deteriorated his abilities and skills."

Oran is participating in the CADET project, which evaluates the safety and effectiveness of deep brain stimulation for severe epilepsy. This project is a collaboration between Great Ormond Street Hospital, University College London, King’s College Hospital, and the University of Oxford.

Developed by UK-based Amber Therapeutics, the Picostim neurostimulator continuously pulses to disrupt the abnormal electrical activity in the brain that causes seizures.

Before the surgery, Justine shared her hopes: "I want him to rediscover himself beyond the seizures. I just want my boy back."

During the intricate eight-hour surgery, consultant pediatric neurosurgeon Martin Tisdall and his team placed two electrodes deep within Oran’s brain, targeting the thalamus, a crucial neural hub. These electrodes were connected to a compact neurostimulator implanted in Oran’s skull.

This method marks an advancement from previous deep brain stimulation techniques that required the neurostimulator to be implanted in the chest with wires running to the brain. Tisdall highlighted that the new skull-mounted device could reduce complications like infections and device failures.

Following a month-long recovery, the neurostimulator was activated. Oran cannot feel the device when it is operational and recharges it daily using wireless headphones while enjoying activities like watching TV.

Seven months post-surgery, Justine noted dramatic improvements in Oran's condition: "He is more alert and free from daytime drop seizures." Nighttime seizures have also become "shorter and less severe." She added, "I'm definitely getting him back slowly."

Tisdall expressed his satisfaction with the outcomes: "We are thrilled that Oran and his family have experienced such significant benefits from the treatment, vastly improving his seizures and overall quality of life."

Oran has now started riding lessons, enjoying them immensely. Although a nurse and a teacher are always nearby as precautions, their help has not been required.

The trial will soon include three more children with Lennox-Gastaut syndrome receiving the deep brain neurostimulator. While Oran currently receives a constant electrical stimulus, future plans involve making the device responsive to real-time changes in brain activity to preemptively block seizures.

Justine is particularly optimistic about this next phase: "The team at Great Ormond Street has restored our hope… now the future looks brighter." Though they recognize the treatment is not a cure, Oran’s family remains hopeful about his continued progress.

The Picostim neurostimulator has also shown promise in treating Parkinson’s disease, and a similar device is being used in the United States for epilepsy, signaling ongoing advancements in neurological treatments.

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