Meet the Groote Schuur Hospital team tackling epilepsy head-on

The EEG (electroencephalogram) room at Groote Schuur Hospital. An EEG is a medical test used to measure the electrical activity of the brain. Potential candidates for an anterior temporal lobectomy undergo weeks of EEG tests to confirm that their seizures are originating from the temporal lobe. (Photo: Tamsin Metelerkamp)

By Tamsin Metelerkamp

8 Aug 2023

Groote Schuur Hospital is the first public health facility in South Africa to offer a high-throughput service for a surgical procedure that alleviates seizures in adult patients with temporal lobe epilepsy. The operation, known as an anterior temporal lobectomy, has long been difficult to access in the public sector.

A multidisciplinary team at Groote Schuur Hospital is striving to create a high-throughput centre for a surgical procedure that can alleviate seizures in patients with temporal lobe epilepsy. The team has operated on four patients so far, and hopes to perform up to 10 more surgeries before the end of 2023.

The procedure, known as an anterior temporal lobectomy, has long been difficult to access in the public health sector because of limited resources, said Dr Aayesha Soni, a neurology registrar at Groote Schuur.

“[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 literally change the course of their entire life,” she said.

Members of the multidisciplinary team tackling surgeries for temporal lobe epilepsy at Groote Schuur Hospital. From left: Dr Melody Asukile, neurologist; Dr MV Gule, neurologist; Carla Hanekom, neurology technologist; Professor Lawrence Tucker, neurologist; Dr Aayesha Soni, neurology registrar; and Dr Sally Röthemeyer, neurosurgeon. (Photo: Tamsin Metelerkamp)

Groote Schuur Hospital is the first public health facility in South Africa to offer this procedure to adult patients on a more regular basis, according to 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 Covid-19 pandemic and the breakdown of a key machine for monitoring patients delayed further surgeries until this year.

epilepsy The EEG (electroencephalogram) room at Groote Schuur Hospital. An EEG is a medical test used to measure the electrical activity of the brain. Potential candidates for an anterior temporal lobectomy undergo weeks of EEG tests to confirm that their seizures are originating from the temporal lobe. (Photo: Tamsin Metelerkamp)

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.

“When I found out that I had epilepsy, the stuff that I really wanted to do the most, I couldn’t do it at all. For example, I love sports, so after the doctor told me that I had epilepsy, I couldn’t do sports any more,” he said.

While Mudimbi was very nervous in the lead-up to the procedure, he found the medical staff very supportive. He described the outcome as life-changing.

“Before I had my surgery, I couldn’t go out… I couldn’t do anything at all. I could just sit, relax and sleep. But now, after my surgery... I could do anything, I could go out. My parents don’t have to be worried. I can do sports,” he said.

“Basically, I’m like a new person after my surgery. Even though, when I went through it, I was scared… it helped me.”

Mudimbi has not had a seizure since his operation in 2020. He is now studying IT at Rosebank College, and has an active sporting life.

A rigorous process

Neurology illnesses make up a large proportion of the burden of disease in Africa, according to Professor Lawrence Tucker, head of neurology at Groote Schuur Hospital. Among the biggest of these are strokes and epilepsy.

“There are various estimates of what the [epilepsy and seizures] incidence rate is… Worldwide, it’s about 5%. Definitely higher in South Africa… so, let’s 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 medications – 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. So, it’s not all of them, but a very significant proportion,” he said.

An anterior temporal lobectomy can only be performed in cases of focal epilepsy, when the seizures originate from one specific part of the brain – the temporal lobe, according to Soni. The process for identifying candidates is rigorous, since the surgery will not be effective for patients with seizures originating in multiple regions of the brain.

“You assess the patient very carefully. You listen to their semiology… the description of the seizures… You do EEGs [electroencephalograms], which is brainwave testing, for weeks sometimes, to identify where it started,” Tucker said.

“You capture a few seizures, and then you do a brain scan, which may or may not show a lesion, and if all the ducks are in a row… they may be a candidate for an operation.

“You also have the neuropsychologist assessing them to make sure that if you take out that part of the brain, it’s not going to compromise their intelligence, their memory, vision, speech… so we have to be sure about that.”

Temporal lobe epilepsy is one of the most common types among adults, according to Dr Sally Röthemeyer, a neurosurgeon at 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. It’s an operation that 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.

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“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 intention of the surgery is to basically open a window in the side of the head, cut through the outside of the temporal lobe – which is 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 who undergo it, she said. Patients are usually able to return home within five to seven days of the procedure.

“You can render a patient who is completely debilitated – they can’t drive, they can’t work, they can’t swim, they can’t 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 Groote Schuur team is trying to do is break down the stigma around epilepsy, which is often caused by a lack of understanding about the condition, according to 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 and so they are usually fired. They lose their income… They aren’t able to maintain long-term relationships because a lot of people don’t understand. And so it all contributes to a lot of mental health issues,” she said.

“From our perspective, what we’re aiming to do long-term is actually create awareness about epilepsy – that it’s actually a disease that you can control when you have adequate medical input in terms of the medications and how they should be optimised,” Soni said. DM

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A rigorous process

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