World first epilepsy device fitted in UK boy’s skull
A groundbreaking procedure has been undertaken on a boy suffering from severe epilepsy, marking the world’s first trial of a newly implanted device designed to manage seizures directly from within the skull.
The neurostimulator, which sends electrical impulses deep into his brain, has significantly reduced Oran Knowlson’s daytime seizures by 80%. His mother, Justine, shared with the BBC that he now experiences greater happiness and a significantly improved quality of life.
The surgery took place in October as part of a trial conducted at Great Ormond Street Hospital in London, when Oran was 12 years old. Oran, from Somerset, has Lennox-Gastaut syndrome, a form of epilepsy resistant to conventional treatment, which he developed at age three. His condition led to several daily seizures, some severe enough to require emergency intervention.
Before the operation, Justine described how epilepsy had consumed Oran’s life, saying, “It has robbed him of all of his childhood.” His seizures included episodes where he fell, experienced violent shaking, and lost consciousness, sometimes requiring emergency measures to restore breathing.
Oran participated in the CADET project, a collaborative effort involving Great Ormond Street Hospital, University College London, King’s College Hospital, and the University of Oxford, aimed at evaluating the safety and effectiveness of deep brain stimulation for severe epilepsy. The Picostim neurotransmitter used in the procedure was developed by UK-based company Amber Therapeutics.
The neurostimulator emits continuous electrical pulses to disrupt abnormal brain activity that triggers epilepsy seizures. Unlike previous methods where stimulators were placed in the chest, with wires extending to the brain, this new device is directly implanted into the skull, offering more precise and effective seizure control.
Led by consultant paediatric neurosurgeon Martin Tisdall, the intricate eight-hour surgery involved inserting two electrodes into Oran’s brain until they reached the thalamus, a critical relay station for brain signals. Precision was crucial, with the margin of error for electrode placement less than a millimetre. The neurostimulator itself, a compact device measuring 3.5cm square and 0.6cm thick, was secured within a gap in Oran’s skull, ensuring stability and functionality.
Justine had expressed hope that the procedure would allow Oran to reclaim his life from the grip of seizures, stating, “I want him to find some of himself again through the haze of seizures. I’d like to get my boy back.”
This pioneering approach represents a significant advancement in treating childhood epilepsy, offering hope to patients like Oran who face severe and treatment-resistant forms of the condition.
Martin Tisdall told the BBC: “This study is hopefully going to allow us to identify whether deep brain stimulation is an effective treatment for this severe type of epilepsy and is also looking at a new type of device, which is particularly useful in children because the implant is in the skull and not in the chest.
“We hope this will reduce the potential complications.”
That includes reducing the risk of infections after the surgery, and the device failing.
Oran was given a month to recover from the operation before the neurostimulator was turned on.
When it is on, Oran cannot feel it. And he can recharge the device every day via wireless headphones, while getting on with things that he enjoys, like watching TV.
We visited Oran and his family seven months post-op to see how they were getting on. Justine told us there had been a massive improvement in Oran’s epilepsy: “He is more alert and with no drop seizures during the day.”
His night-time seizures are also “shorter and less severe”.
“I’m definitely getting him back slowly,” she said.
Martin Tisdall said: “We are delighted that Oran and his family have seen such a huge benefit from the treatment and that it has dramatically improved his seizures and quality of life.”
Oran is now having riding lessons, which he clearly enjoys.
Although a nurse is on hand with oxygen, and one of his teachers is always nearby just in case, neither has been needed so far.
As part of the trial, three more children with Lennox-Gastaut syndrome will be fitted with the deep brain neurostimulator.
Currently, Oran gets a constant electrical stimulus from his device.
But in future, the team plan to make the neurostimulator respond in real time to changes in his brain activity, in an attempt to block seizures as they are about to happen.
Justine said she was most excited about this next phase of the trial: “The Great Ormond Street team gave us hope back…now the future looks brighter.”
Oran’s family know his treatment is not a cure, but they are optimistic he will continue to emerge from the shadow cast by his epilepsy.
The Picostim neurostimulator, owned by Amber Therapeutics, has also been used to treat patients with Parkinson’s disease.
1 comment
Science is really improving