Landmark study reveals epilepsy surgery reverses cognitive decline in children

A first-of-its-kind study, led by researchers from GOSH and the UCL Great Ormond Street Institute of Child Health (UCL GOS ICH) has found that brain surgery for epilepsy is linked to significant improvement in children’s cognition.

The team, many of whom are funded by Great Ormond Street Hospital Charity (GOSH Charity), reveals that surgery not only halts but in fact reverses the decline in neuropsychological functioning for these children.

The study retrospectively analysed the records of children with drug-resistant epilepsy who received surgery at GOSH. It is the first time a study has measured changes in cognitive ability over such a long-term period — more than 10 years before and 15 years after surgery — and across all types of epilepsy.

In previous studies, where analysis was only conducted directly before and directly after surgery, cognitive ability appeared unchanged in children. However, this study reveals that when children were followed up many years after surgery, becoming seizure free as a result of surgery led to an uplift in children’s cognition, including problem-solving, memory and academic performance, which continued to improve over time.

The research team analysed the data of 500 children who had undergone epilepsy surgery at GOSH between the years 1990 and 2018. Information was taken from IQ tests and tests of academic attainment performed many years before and after surgery.

Most children studied had shown declines in all areas of neuropsychological functioning in the time leading up to surgery. However, those who became seizure-free through surgery showed higher neuropsychological performance post-operation and continued to show improvements in cognitive functioning over their long-term follow-up.

Honorary Research Fellow at UCL Great Ormond Street Institute of Child Health, Dr Maria Eriksson said:

“We have known for many years that brain surgery for drug-resistant epilepsy can be transformative in achieving seizure freedom for children, but we have known less about how surgery impacts cognition, particularly in the long-term.

This study shows us the extent to which children’s cognition can continue to improve in the years after surgery, allowing them to catch up with their peers. We hope this knowledge will support clinicians and help to empower children and their families when making an informed decision on whether to proceed with brain surgery for epilepsy.”

GOSH Charity’s Director of Impact and Charitable Funding, Dr Aoife Regan, said:

“This promising new research demonstrates the enormous impact that world-class treatment for conditions like epilepsy can have on a child’s life.

“At GOSH Charity, we do everything we can to give seriously ill children the best chance and the best childhood possible and are proud to have supported many of the researchers who have contributed to this important study in their work to transform the lives of children with epilepsy.”

Will was a healthy, intelligent child who was in the top sets at school. A talented sailor, he had his sights set on the Olympics and was competing in national and international events.

However, shortly before Will’s thirteenth birthday he experienced a tonic seizure while on holiday in Paris. After spending some time at hospitals in France, Will was repatriated by ambulance to GOSH.

Will said: “My consultant Martin Tisdall said I’d experienced a brain injury caused by a burst cavernoma, which are abnormal clusters of vessels containing bubbles filled with blood.

“At that point it felt like I couldn’t do anything anymore. I was paranoid I would have another seizure, and if I did who would be there to help me? The tiredness was really annoying. I would do an hour in school, come home, sleep and then get up and do another hour.”

Mum Cherie adds: “Will completely lost his childhood. He didn’t go out, go to the park or cinema and didn’t go to prom. He became a recluse. There were talks about sending him back a year at school. I think it’s fair to say it sent him into quite a dark place.”

One of the biggest frustrations for Will was how his condition had impacted his sailing. Luckily, Sailability, a sailing organisation for disabled people, gave Will the chance to get back on the water.

Will said: “We found Sailability and I even ended up sailing with the Invictus team. My risk assessment said I had to wear a helmet and collared life jacket so that if I had a seizure and fell in the water I’d be able to float on my back. I found sailing harder because I was always so tired. The eight-hour days became near impossible as I needed a nap in the middle.”

Clinicians and Will’s family agreed to wait before considering surgery, but Will soon decided that life as he knew it was too difficult and wrote to GOSH about how he was feeling. He was scheduled in for surgery 10 weeks later.

Will said: “Martin Tisdall talked it over in a fashion that I understood and the fact that they would be removing the cavernomas, as well as a section of my temporal lobe. He was great and honest about the risks.”

Cherie said: “The surgery was transformational, even in the shortest time. By the end of the day his bandage was off, and the following day he got up and walked. We were all flabbergasted.”

Will, now considered previously epileptic adds: “I wasn’t allowed to sail for a while but within six weeks I was back on the boat. It felt weird the first time as I had lost my confidence and balance. My brain still had to re-knit and I could feel little air bubbles in my brain.

“At school I struggled at first because I’d forgotten bits. I had a reader and scribe in my exams and that really helped me. I was better able to function, and my recall was better. I am expecting my A Level results this August and have an offer from Bournemouth Uni, Brighton Uni and Surrey Uni for paramedic science. I’m hoping to go to Bournemouth.”

Cherie said: “What we’re seeing now I couldn’t have envisaged three years ago. We’re living with the new Will, living his best life. He passed his driving test in six weeks, he’s one of the youngest power boat instructors and at one point was the youngest day skipper in the country. There are minor challenges but if you consider how challenging life was versus life now, it’s amazing.”

Will said: “Sailing is my safe space. When I’m having a bad day and I go sailing, it’s just me, the water and the boat. Sailing is now my hobby — I teach sailing and power boating courses on the weekend to earn pocket money, and I’m going to keep it like that. The America’s Cup have paramedics on their safety boats. That would be my dream job.”

Aaron was a few months old when he experienced his first seizure.

Mum Christina said: “He started shaking – I'd never seen anything like it. I called an ambulance and they told me he was having baby convulsions, but over time it got a lot worse. It was an awful time. When you look back you don’t realise how you got through it. I feel for any parent going through that.”

He was later transferred to GOSH, and the family spent a large part of his childhood travelling back and forth between the hospital and their home in Kent.

“At school, Aaron was always behind others his own age and struggled quite a bit. He also missed so much school due to his seizures.”

Aaron said: “Before surgery I had around five or more seizures a day and often couldn’t go out and play with my friends. It was the worst time of my life. I never wanted to leave home and after every seizure it would take me such a long time to get over it. I couldn’t live life the way I was.” Aaron’s worst seizure left him in a coma, which Christina described as “terrifying”.

The family was told that Aaron was eligible for brain surgery to treat his epilepsy, and in 1993 he underwent his first operation.

Christina said: “When we were told about the surgery we were as frightened as you could be, but we knew we had to do it. Waiting for the operation to end felt like a lifetime. The first operation went well, but it was decided that a second procedure was necessary, and that took place a few years afterwards. We couldn’t have imagined a better outcome.”

Aaron said: “I’m so glad I had the surgery. Life is so much better and I feel so happy. I can do so much more – I’ve got a job at a gym and have barely missed a day of work since I started my first job aged 17. I have a season ticket for Fulham FC and regularly go and watch matches with my friends.”

Christina said: “Aaron’s cognition has come on so much. His memory is incredible, he’s so dedicated to his job and has a lovely group of friends - he's so sociable. I can’t describe how much epilepsy surgery has changed our lives – not just Aaron’s life, but the entire family's.”