A Johannesburg man has become the first South African with epilepsy to undergo life-altering deep brain stimulation (DBS) surgery, after being diagnosed as a child with refractory epilepsy, a severe form of the condition that does not respond to most treatments.
The success of Peter Olivier’s DBS, in which a certain part of the brain is stimulated with a mild electrical pulse in the hope of decreasing the number of seizures experienced over time, opens doors for other South Africans with the same condition.
News24 reports that Olivier underwent the life-altering brain surgery at Netcare Milpark Hospital in February. Although it had been done in South Africa before, it had never been performed on an epilepsy patient in the country.
His mother, Adrienne, said although he was diagnosed with the condition when he was seven, the signs had been detected years before. When he was a baby there was always milk running down walls, she said, because when he was holding his bottle, a sudden jerk would cause his arm to involuntarily lift, throwing milk everywhere: it was the first indication of his seizures. His official diagnosis would only come years later.
“The first (official) diagnosis (came) when he collapsed in a parking lot with his father.”
At 13, Peter was attacked by his neighbour’s dog. Afterwards, Adrienne noticed a spike in his seizures. His medication was increased, but eventually, as is the case with refractory epilepsy, the pills stopped working.
The family turned to the ketogenic diet, which made a difference for several years, but eventually that lost its efficacy, too. At one point, he was having up to 150 seizures a day.
What provided some relief for the family was the insertion of a vagus nerve stimulation (VNS) device – which prevents or lessen seizures by sending mild electrical pulses to the brain via the vagus nerve.
“The VNS has helped, but then it just stopped working effectively… it is also really painful when he has to shock himself or if he has a seizure.”
What is refractory epilepsy?
The ILAE (International League Against Epilepsy), defines refractory epilepsy as a patient who has epilepsy that has not responded to at least three classical anti-seizure drugs, said neurologist Dr Shaheed Gora.
Gora formed part of the Netcare Milpark Hospital team that performed the DBS procedure on Olivier.
What is deep brain stimulation?
“Deep brain stimulation, or DBS, is very innovative,” said Gora. “Initially, we’ve used DBS in Parkinson’s Disease. And DBS is used in Parkinson’s because, in that disease, we recognise there’s a specific group of neurons that are not producing dopamine. The rationale for DBS and Parkinson’s Disease was that if we can stimulate that part of the brain, we can improve patients’ symptoms.”
Recently, global epilepsy societies and the US FDA (Food and Drug Administration) recognised the use of DBS in patients with epilepsy. After exhausting all other treatments with no desirable outcome, the medical team knew DBS was the one thing that could provide some relief for Olivier.
The operation took place on 26 February.
“Being the first, there were lots of challenges,” said Gora. “But generally, (DBS is) fairly well tolerated, according to the data from European as well as American studies.”
Gora said some patients might notice a change in mood and memory, but the numbers were fairly low in the long-term data.
“What we’re looking for is not a cure for epilepsy, because in patients with refractory epilepsy, we don’t generally get to that point. But we’re looking for seizure reduction so that patients are able to improve their quality of life.”
With the DBS procedure, a device is placed beneath the skin, close to the clavicle, which generates an electrical pulse. Holes are drilled into the head and, in patients with epilepsy, leads are introduced into the thalamus.
“The idea is that if we can stimulate that part of the brain correctly, we can actually interrupt some of these seizure pathways and reduce the seizures.”
Even though the stimulation starts shortly after surgery, there is a latency period of around four to nine months in epilepsy patients. Research has shown that some patients have experienced a great reduction in their seizures, even five years after the treatment.
Olivier, who graduated on 1 April, is optimistic about what the future holds. Simple things, like being able to hail a taxi alone, get a job, or go swimming, become extremely dangerous for patients with refractory epilepsy. But the DBS will hopefully grant him more freedom and the chance to live an independent life.
It also brings hope for other people living with this condition in South Africa. “The exciting thing is that now that the precedent has been set, and we know we have the technology available and have performed the first one in South Africa, it opens this up as a treatment modality for refractory patients who fit into the right group,” said Gora.
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