Creating an epilepsy monitoring unit in Manitoba is a vital step towards comprehensive care of young patients with medically-resistant seizures, local specialists say
The case was as troubling as it was heartbreaking. An eight-year-old boy presented with catastrophic epilepsy, cerebral palsy and progressive developmental delays. On a daily basis, he was experiencing dozens, if not hundreds, of seizures. His quality of life was diminishing. Over the previous year, he had regressed developmentally, and began losing motor and speech functions. Medications weren’t helping. The seizures were gradually winning.
“That’s not a quality of life. It’s devastating,” says Dr. Demitre Serletis. In 2013, this was the case facing Dr. Serletis and his colleagues in the Departments of Neurosurgery and Neurology at the Arkansas Children’s Hospital and the University of Arkansas for Medical Sciences, in Little Rock. After a lengthy admission to intensive care for seizure activity that failed to cease over a span of days, they collected more electrical (EEG) brain recordings. These confirmed the seizure events were arising from one side of the brain, from a large region that had been affected by a stroke at birth. The source of the seizures was discovered. Dr. Serletis and the team knew they could intervene. The best course of action? A left-sided disconnective hemispherotomy. So they performed the procedure while monitoring the electrical activity in the boy’s brain, in real time.
“With the last surgical disconnection, the seizures stopped. The brain’s electrical storms calmed down. It was beautiful to see.”
Within a few days, the little boy woke up. And within three months, his motor and language skills had bounced back, and even progressed. Today, that Arkansan boy is 11 years-old. He hasn’t had a single seizure since the life-saving procedure.
Several months later, Dr. Serletis and the team repeated the performance in a 15-month-old child also with catastrophic epilepsy, who underwent an anatomical hemispherectomy. He remains seizure-free, nearly three years later.
These are the kinds of success stories that Dr. Serletis now wants to tell about pediatric epilepsy patients in Manitoba. And that’s exactly why Dr. Colin Kazina, Service Chief of Pediatric Neurosurgery at Health Sciences Centre, and other colleagues, sought to recruit Dr. Serletis to Winnipeg in Spring, 2016.
“We’ve been out of sequence with the services we can offer. I wanted to focus our recruitment on epilepsy surgery because I felt that Manitoba children weren’t getting comprehensive care for epilepsy,” Dr. Kazina says.
The duo are the small team who make up the Pediatric Neurosurgery Service within the Section of Neurosurgery at the University of Manitoba. They are working with a strong multidisciplinary team, and are taking the first steps towards the formation of a formal Epilepsy Surgery Program at the Winnipeg Children’s Hospital / Health Sciences Centre. Their first task? They need local infrastructure to support a new Epilepsy Monitoring Unit (EMU).
An EMU is as a multi-bed unit where patients with epilepsy can undergo safe, supervised medical evaluations for their epileptic seizures, including the necessary work-up to establish their candidacy for epilepsy surgery.
With its inception, surgery would then become another treatment option for young patients in Manitoba suffering from medically untreatable epilepsy (in appropriate cases). Amongst other investigations, potential surgical candidates could have small electrodes surgically (and safely) implanted on the surface or within the brain, to better identify the source of their seizures. Following several days of careful monitoring in the EMU, an electrical map of the brain’s epileptic activity could be charted. Using this map, epilepsy-trained neurologists and neurosurgeons would identify the origins of the epileptic activity and perform a surgical intervention to stop the seizures – in many cases, permanently.
While providing surgical options for local patients is a key part of the plan, there’s more to it, Dr. Kazina says.
“It’s about comprehensive epilepsy care.”
“We are but a part of one big, collective team: neurology, neurosurgery, radiology, nuclear medicine, neuropsychology and pathology, in addition to nursing and EEG technologists,” Dr. Serletis adds.
Making the plan happen isn’t a pie-in-the-sky prospect. It’s all very possible, they both say. Manitoba has the brain power right here. We have most of the advanced technology required to pursue epilepsy care. Training specialists on new procedures and treatment options isn’t a significant hurdle either.
Hiring Dr. Serletis in Spring, 2016 was a huge step forward. Dr. Serletis, who trained at the University of Toronto and then the Cleveland Clinic, is fast becoming an international leader in epilepsy research and the surgical treatment of pediatric and adult epilepsy. And he has experience building a program from the ground up. Along with his Arkansas-based colleagues in the U.S., Dr. Serletis launched a comprehensive pediatric/adult epilepsy centre in Little Rock.
The next step in Manitoba? The political, public, institutional and monetary will to make it happen here. Using a recent Ontario assessment of a similar plan for comprehensive epilepsy care in that province, the start-up capital cost for a pediatric and adult EMU runs somewhere around $2 to $3 million. Once established, the EMU is substantially more affordable, operating at a fraction of the initial cost. However, there is an immediate cost benefit, on the scale of tens of millions of dollars in the long-run. In fact, based on recent statistics from Manitoba Health, the province has already spent an estimated $1.5 million since 2008, to send patients out of province for epilepsy surgery.
“There have been a lot of monetary resources put towards sending patients to other centres, that could be used in setting up our own program right here in Manitoba,” Dr. Serletis says.
“We already have the manpower to do it.”
Dr. Kazina agrees
“I can’t ignore the feeling I have to do this. It’s my number one priority in terms of advancing care for Manitoba children, and advancing comprehensive epilepsy care in the province.”
And there’s no reason that Manitoba, with the establishment of a comprehensive epilepsy program, can’t become a leading centre in Canada for the surgical treatment of epilepsy, particularly in children. Currently, many referrals for potential epilepsy surgery are sent to out-of-province centres, often with significant wait times and a logistically complicated course. These are early days in their mission, but Drs. Serletis and Kazina are determined to make it happen here, and provide superb and timely care to their patients.
Today in Manitoba, as with most newly-diagnosed epilepsy patients, treatment relies on medication. Intractable epilepsy, however, is defined by the failure of as few as two anti-epileptic medication regimens. In these cases, surgery may be effective in patients who fail medical therapy, and only when the source of their seizures can be identified. Unfortunately, in Manitoba, complete investigation of the surgical options are currently limited.
Treating epilepsy primarily with medication (in the absence of surgical options) isn’t just confined to Manitoba. Epilepsy surgery is one of the most under-utilized of all medical treatments. And yet, it’s an emerging and exciting field. In the past 15 years, tremendous surgical advances have been made, and research points to the strong efficacy of surgery as an option for medication-resistant epilepsy. The results are even better in children and adolescents. In part, this is because MRI technology has advanced, allowing specialists to identify subtle brain malformations even better. Specialist training has progressed, as well. And so have the surgical techniques available for investigating and treating the condition.
“We’re catching more lesions, including developmental malformations, low-grade tumors, and scarring within the brain.” Dr. Serletis says. “And our ability to put electrodes on the surface, and even more importantly inside the brain, has improved dramatically.”
Setting aside the absence of a local EMU, why aren’t surgical treatments for epilepsy used, or even recommended, more often? Both Dr. Serletis and Dr. Kazina have some theories.
Knowledge of new advancements in epilepsy treatment isn’t widespread, from the patient level to family physicians, and all the way up to provincial health policy makers. And naturally, the words ‘brain surgery,’ especially for parents of young epileptic patients, is a terrifying deterrent. But there’s plenty of evidence to suggest that early surgical intervention for epilepsy is safe and vital to long-term outcomes.
“There is a penalty to waiting longer. In treating epilepsy, you have better odds if you can get to it within the first few years of onset,” Dr. Serletis says.
That’s because young brains are still developing and growing. They have the benefit of ‘neuroplasticity’ — the ability for the brain to heal and rewire itself after injury or disease. Adult brains do not recover as readily, so the longer that epileptic patients wait without permanent seizure relief, the less likely they will attain seizure freedom.
Epilepsy is more common than most people think, affecting one in 26 individuals (pediatric or adult) in North America. Two additional and little-known facts about epilepsy: it has the same reported incidence as breast cancer; and epilepsy affects more patients than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease, combined.
By definition, epilepsy is a chronic condition that is often diagnosed after two or more recurrent and persistent seizure events develop. In nearly 85 per cent of cases, epilepsy will arise before the age of 18 years old. In doing the math, there are nearly 15,000 to 16,000 patients with epilepsy in Manitoba. One-third of these patients remain refractory to medication (more than 5,000 to 6,000 individuals in our province; and nearly half of those are children). They would immediately benefit from improved epilepsy resources in the province leading towards earlier surgical intervention.
Drs. Serletis and Kazina are aware of the stark realities and challenges facing patients with refractory epilepsy in Manitoba. These numbers don’t do justice to the underlying problem, they both say. Patients with epilepsy face lifelong challenges. There is mounting stress on families, including emotional and financial. Young patients with epilepsy may be cast out by their peers, for fear of unpredictable seizure events that can occur at any time. The condition can be socially isolating for patients of all ages. Employment, and even driving, becomes impossible. And there are even more alarming outcomes at risk.
As Dr. Kazina says: “If we don’t put a plan for comprehensive epilepsy care in action, patients with intractable epilepsy will continue to be at risk for catastrophic consequences.”
This could include significant injuries to patients themselves, or to others around them. Statistically, patients with epilepsy are four-times more likely to hurt themselves, with late-breaking research suggesting the rate of all-cause mortality is as high as 12 per cent in the first two years of diagnosis. Dr. Serletis has stories of a few patients who have drowned in bathtubs, fallen from staircases, or even burned to death after falling onto a stove-top. And worst of all, there ‘sudden unexplained death in epilepsy,’ or SUDEP, which is estimated at approximately nine per cent per decade, for patients with poorly-controlled epilepsy.
The stories are heartbreaking, and real. It is these stories, and knowing that it is not only possible but highly probable that they can help young patients live seizure free, that drives Drs. Serletis, Kazina and their multi-disciplinary colleagues forward.
Besides funding, the EMUs and some technological upgrades, most other critical elements to a strong epilepsy program for the province are already in place. The surgical outcomes and cost-effectiveness of focused efforts towards epilepsy care remain indisputable. Improving patients’ lives, and that of their families and support networks, by helping them achieve improved control over their epileptic seizures is within easy reach. And in pursuing this goal, one can anticipate significant reductions in ER wait times, demands for EEG and imaging studies, medications, in-hospital use of resources (including lengthy intensive care unit admissions), and mental health-related costs, amongst other factors.
Creating comprehensive epilepsy care for young epileptic patients in Manitoba, including the establishment of an EMU, is all realistic, and doable, says Dr. Kazina.