Groote Schuur is the first government hospital to perform a procedure to alleviate seizures in adults with temporal lobe epilepsy – an operation, known as an anterior temporal lobectomy, that has long been difficult to access in the public sector because of limited resources.
So far, a multidisciplinary team at the hospital, focused on creating a high-throughput centre for the procedure, has operated on four patients and hopes to perform at least another 10 before year-end.
Dr Aayesha Soni, a neurology registrar at Groote Schuur, told Daily Maverick that epilepsy “can debilitate a person’s life so much, but if you manage it well – and there are options for managing it well, they are just not available to everyone – you can change their entire life”.
The hospital will be the first public health facility in SA to offer this procedure to adult patients on a more regular basis, said the team. Red Cross Children’s Hospital in Cape Town has a high-throughput service for the surgery, but only for paediatric patients.
The development of the service was driven in part by Soni’s master’s dissertation, which focused on epilepsy and sought to identify patients at Groote Schuur who were potential candidates for an anterior temporal lobectomy.
The first procedure took place in 2020. However, the pandemic and the breakdown of a key machine for monitoring patients delayed further surgeries until this year.
The patient who received the first surgery was David Mudimbi, who came to South Africa from the Democratic Republic of Congo when he was three years old. At the time of the surgery he was 17 and having seizures up to four times a week.
He described the outcome as life-changing.
“Before, I couldn’t do anything at all. I could just sit and sleep. But now, I’m like a new person. I can play sports as well.”
A rigorous process
Neurology illnesses comprise a large proportion of the burden of disease in Africa, said Professor Lawrence Tucker, head of neurology at Groote Schuur Hospital, with strokes and epilepsy among the biggest.
“There are various estimates of what the [epilepsy and seizures] incidence rate is… Worldwide, it’s about 5%. Definitely higher here… so, say between 5% and 10% of South Africans have seizures,” he said.
When it comes to controlling epileptic seizures, up to 50% of patients can be treated successfully with medication, though these, and their side-effects, vary. About 50% of patients have seizures that are difficult to control with medicines, while a small percentage have conditions where “control is just impossible”, Tucker said.
“A significant proportion of those patients who are resistant to treatment [with medications] are amenable to surgical operations – not all of them, but a very significant proportion.”
An anterior temporal lobectomy can only be performed in cases of focal epilepsy, when the seizures originate from the temporal lobe. Identifying candidates is rigorous, as the surgery will not be effective for patients with seizures originating in multiple regions of the brain.
“You assess the patient very carefully… listen to their semiology… You do EEGs …for weeks sometimes, to identify where it started.
“You capture a few seizures, then do a brain scan, which may or may not show a lesion, and then… they may be a candidate for an operation.
“You also have the neuropsychologist assessing them to make sure that if you remove that part of the brain, it won’t compromise their intelligence, their memory, vision, speech.”
Temporal lobe epilepsy is one of the most common types among adults, says neurosurgeon Dr Sally Röthemeyer from Groote Schuur who has been performing the anterior temporal lobectomy procedures.
“The standard surgical operation for that… is to cut out the anterior temporal lobe. The operation lasts two to three hours. The surgical target is deep within the temporal lobe in a very ancient part of circuitry that’s nestled deep in the brain,” she said.
“We’ve got that human model of ‘ancient lizard brain’ with ‘new brain’ bolted on top, and that’s pretty much what’s going on in the temporal lobe… The problem in temporal lobe epilepsy is the circuitry in the deep part of the brain is usually the culprit, ancient circuitry. It’s called the limbic system. That’s what’s triggering the seizures because of scars.
“The surgery’s intention is to basically open a window in the side of the head, cut through the outside of the temporal lobe – the ‘new brain’ – and then go all the way… to the ancient circuit part, and take that out as well.”
The correct execution of this surgery cures epilepsy in 70% to 85% of the patients, she said. They can usually return home within five to seven days.
“You can render a patient who is completely debilitated – they can’t drive, work, swim, cook, because of having so many seizures – you can render them seizure-free. That is the best outcome and… the percentage is quite significant,” Tucker said.
Breaking down stigma
Part of what the team is trying to do dissolve the stigma around epilepsy, which is often caused by a lack of understanding, said Soni.
“Most of our patients who have what we call medically refractory epilepsy, so they’re on two or more drugs and still having seizures, they don’t get jobs, [or] their jobs don’t understand, so they are usually fired. They lose their income… They can’t maintain long-term relationships because a lot of people don’t understand. So it all contributes to a lot of mental health issues.
“What we’re aiming to do long-term is actually create awareness about epilepsy – that it’s a disease you can control when you have adequate medical input in terms of the medications and how they should be optimised.”
See more from MedicalBrief archives:
First SA patient with epilepsy has life-altering brain surgery
NHS offers laser beam surgery for some epilepsy patients
People with epilepsy live 10-12-years shorter lives – Danish cohort study