A British teenager with severe epilepsy has become the first person in the world to receive a brain implant aimed at suppressing seizures.
Oran Noorson’s neurostimulator, placed under the skull, sends electrical signals deep into the brain, reducing daytime seizures by 80%.
His mother, Justine, said her son is happier, more talkative and has a much better quality of life since being fitted with the device. “The future looks bright. I never would have dreamed of saying that six months ago,” she said.
Martin Tisdall, consultant paediatric neurosurgeon, who led the surgical team at London’s Great Ormond Street Hospital (Gosh), said: “Epilepsy has been completely life-changing for Orlan and his family, so to see him riding a horse and regaining his independence is truly amazing. We couldn’t be happy to be part of their journey.”
Oran, 13, from Somerset, underwent the operation in October as part of a clinical trial at Ghosh Hospital, which is associated with University College London, King’s College Hospital and the University of Oxford. Oran has Lennox-Gastaut syndrome (exogenous), a treatment-resistant form of epilepsy that developed at the age of three.
Since then, and before he was fitted with the device, Oran never had a day without a seizure, sometimes hundreds of times a day. He would lose consciousness, stop breathing and often need to be resuscitated. This meant that seizures could occur at any time of the day, meaning Oran required round-the-clock care and was at significantly increased risk of sudden, unexpected death from epilepsy (Sudep).
The Picostim neurotransmitter is manufactured by Amber Therapeutics, a British company. 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 less than a millimeter of precision, were connected to a neurostimulator. The device, which was 3.5 cm square and 0.6 cm thick, was placed in a gap in Oran’s skull where bone had been removed and secured to the surrounding skull with screws. It could be charged by wearable headphones.
Once he recovered from surgery, Oran’s device was turned on, delivering continuous, mild electrical stimulation to his brain with the aim of blocking the electrical pathways that cause seizures.
“We’ve seen a big improvement. The attacks have decreased in frequency and severity,” Justin says. “He’s a lot more talkative and proactive. He’s 13 now and I have a teenage son. He’s happy to say ‘no.’ But he’s better at expressing his feelings and that has improved his quality of life.”
The Trainee Pilot (Pediatric Adapted Deep Brain Stimulation for Epilepsy Trial) will now recruit three more patients with Lennox-Gastaut syndrome, bringing the total to 22 patients for inclusion in the full trial.
“Every day we see the life-threatening and life-limiting impacts of uncontrolled epilepsy – completely preventing people from attending school, enjoying their hobbies, or even simply watching their favorite television shows,” Tisdall said.
“Deep brain stimulation brings us closer than ever to stopping epileptic seizures in patients who have very limited effective treatment options. We are excited to build the evidence base to prove the effectiveness of deep brain stimulation in treating pediatric epilepsy and hope that in the coming years this will become the standard of care that we are able to offer.”