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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