A British teenager with severe epilepsy has become the first person in the world to receive a brain implant to control seizures.
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, more talkative and had a much better quality of life since getting the device. “The future looks hopeful, which I wouldn’t have dared to say six months ago,” she said.
Martin Tisdall, a pediatric neurosurgeon who led the surgical team at Great Ormond Street Hospital (Gosh) in London, said: “For Oran and his family, epilepsy changed their lives completely and so to see him riding and regaining his independence getting is absolutely amazing. We couldn’t be happier to be 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 partnership with University College London, King’s College Hospital and the University of Oxford. Oran has Lennox-Gastaut syndrome, externala treatment-resistant form of epilepsy that he developed at the age of three.
Between then and the placement of the device, he has not had a single day without a seizure and sometimes hundreds per day. He often lost consciousness and stopped breathing, requiring CPR. This means that Oran required 24-hour care as seizures could occur at any time of the day, and he was at significantly increased risk of sudden, unexpected death due to epilepsy (Sudep).
The Picostim neurotransmitter is made by the British company Amber Therapeutics. During the surgery, Tisdall and his team placed two electrodes deep into Oran’s brain until they reached the thalamus, a closely connected junction 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 placed into an opening in Oran’s skull where the bone had been removed and anchored to the surrounding skull with screws. It can be charged via portable headphones.
Once he recovered from the surgery, Oran’s device was turned on, providing his brain with continuous mild electrical stimulation with the aim of blocking the electrical pathways that could allow seizures to occur.
“We have seen a big improvement, the attacks are reduced and less severe,” said Justine. “He is much more talkative and involved. He turned thirteen and I’m definitely a teenager now – he likes to say no. But that contributes to the quality of his life, because he can express himself better.”
The Cadet Pilot (Children’s Adaptive Deep Brain Stimulation for Epilepsy Study) will now recruit three additional patients with Lennox-Gastaut syndrome, with a view to recruiting 22 patients to participate in a full study.
Martin Tisdall, pediatric neurosurgeon at Gosh and honorary associate professor at UCL, said: “Every day we see the life-threatening and life-limiting consequences of uncontrollable epilepsy. It can make school, hobbies, or even watching a favorite TV show completely impossible.
“Deep brain stimulation brings us closer than ever before to stopping seizures in 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 this will be a standard treatment we can offer in the years to come.”