A British teenager with severe epilepsy has become the first person in the world to be fitted with a brain implant aimed at bringing seizures under control.
Oran Knowlson’s neurostimulator sits under the skull and sends electrical signals deep into the brain, reducing his daytime seizures by 80%.
His mother, Justine, said her son was happier, chattier and had a much better quality of life since receiving the device. “The future looks hopeful, which I wouldn’t have been able to say six months ago,” she said.
Martin Tisdall, a consultant pediatric neurosurgeon who led the surgical team at Great Ormond Street Hospital (Gosh) in London, said: “For Oran and his family, epilepsy has completely changed their lives and so to see him riding driving and regaining his independence is absolutely amazing. We couldn’t be happier to be a part of their journey.”
Oran, who is 13 and lives in Somerset, had the operation in October as part of a trial at Gosh in collaboration with University College London, King’s College Hospital and the University of Oxford. Oran has Lennox-Gastaut syndrome, exta treatment-resistant form of epilepsy he developed at the age of three.
Between then and the device being fitted, he had not had a single day without an attack and sometimes suffered hundreds in a day. He often lost consciousness and would stop breathing, requiring resuscitation. This means that Oran needed 24-hour care, as seizures could occur at any time of the day, and he has a significantly increased risk of sudden unexpected death in epilepsy (Sudep).
The Picostim neurotransmitter is made by the British company Amber Therapeutics. During the operation, Tisdall and his team inserted two electrodes deep into Oran’s brain until they reached the thalamus, a highly connected center in the brain. The wires, which had to be placed with an accuracy of less than a millimeter, were connected to the neurostimulator. This 3.5 cm square and 0.6 cm thick device was inserted into a gap in Oran’s skull where the bone was removed and anchored to the surrounding skull with the help of screws. It can be recharged by portable headphones.
Once he recovered from surgery, Oran’s device was turned on, delivering constant mild electrical stimulation to his brain with the goal of blocking electrical pathways that trigger seizures.
“We’ve seen a huge improvement, seizures have reduced and are less severe,” Justine said. “He’s much more chatty, he’s more engaged. He turned 13 and I definitely have a teenager now – he’s happy to say no to me. But it adds to his quality of life, when he can express himself better.”
The cadet pilot (Children’s adaptive deep brain stimulation for epilepsy trial) will now recruit three additional patients with Lennox-Gastaut syndrome, with a view to recruiting 22 patients to participate in a full trial.
Tisdall said: “Every day we see the life-threatening and life-limiting impact of uncontrolled epilepsy. This can make school, hobbies or even just watching a favorite TV show completely impossible.
“Deep brain stimulation brings us closer than ever to stopping epileptic seizures for patients who have very limited effective treatment options. We are excited to build the evidence base to demonstrate the ability of deep brain stimulation to treat pediatric epilepsy and hope that it will be a standard treatment we can offer in the coming years.”
