As a teenager Tommy Hains of Ottawa began having auras - brief spells in which he looked dazed and felt dizzy. He brushed it off until the day he experienced a seizure that left no doubt he was among the 140,000 Canadians living with epilepsy.
“A few months before my high school graduation I had my first full seizure at school and was taken by ambulance to the hospital,” recalls Tommy, 26, who today is working for an Ottawa engineering consulting firm after graduating cum laude in structural engineering from the University of Ottawa.
A local neurologist gave Tommy a prescription for one of several epilepsy medications that were developed over the last couple of decades for controlling seizures.
“I was fine for a few months, but on my first day of university classes, I had a seizure in the middle of class and went to the hospital again,” says Tommy. “I started to have seizures fairly often and had to drop some courses.”
Tommy noticed he was having seizures when he was feeling really tired or stressed -common triggers for seizures. One evening he had a seizure at the movies as a result of fatigue. Some patients have epilepsy associated with photosensitivity, in other words, seizures can be triggered by flashing lights.
“At the hospital later, I had a few more seizures. That was the tipping point. I dropped all my courses. I wasn’t having a normal school life because of seizures so I stayed home and focussed on getting seizures under control.”
Tommy’s medication had become ineffective, which can happen in about 30-40 per cent of patients according to large clinical series reported worldwide. Surgery was the next option.
Tommy’s Ottawa neurologist recommended The Neuro, a world centre for epilepsy surgery since the time of its founder, Dr. Wilder Penfield, in the 1930s. Penfield and his team developed a surgical method in which patients are given a local anesthetic that allows them to remain awake during surgery. When the brain cortex is exposed, the patient is able to answer the surgeon’s questions as the surgeon probed inside the brain. Known as the Montreal Procedure this method, along with resection of the temporal lobe to remove the seizure focus is still in use throughout the world.
Tommy was admitted for a week at The Neuro’s epilepsy monitoring unit, where he was taken care of by Dr. Eliane Kobayashi, an epileptologist (a neurologist specialized in epilepsy). She is also a researcher investigating drug-resistant epilepsy patients. Recipient of two Early Career Physician-Scientist awards from the American Epilepsy Society, Dr. Kobayashi is director of the MNI Epilepsy fellowship program, which trains future epilepsy experts.
At the epilepsy unit, Tommy underwent 24/7 video-EEG recording for monitoring his brain’s electrical activity. The computer monitoring software was developed at The Neuro by one of the world’s foremost specialists in electroencephalography, Dr. Jean Gotman, whose research has received awards of excellence by the International League Against Epilepsy and American Epilepsy Society. His updated software is used by many other epilepsy centres. Working together with Dr. Francois Dubeau, an epileptologist and electroencephalographer, Dr. Gotman has done ground-breaking research in neurophysiology and neuroimaging for decades.
“They were able to record several seizures and uncover the source,” says Tommy. “They determined that my brain had a scar or malformation that was triggering seizures when I was fatigued or under stress.”
A seizure like Tommy’s occurring in just one area of the brain is called a focal seizure. If seizures start in a more diffuse bilateral pattern throughout the brain, they are called generalized seizures.
Malformations during early brain development are just one cause of epilepsy. Other causes include head injuries that leave brain tissue scarring; high fever and prolonged convulsions during early childhood trauma; a stroke; a tumour. In some cases, the cause is unknown.
During the year’s interval between his first seizure at university and his surgery, Tommy had a tough time emotionally.
“I was very disappointed to drop my whole semester. I’d been eager to start my adult life. I had always been healthy, and it was tough to realize that my body had new limitations.”
During his pre-surgery stay at The Neuro, Tommy was given routine tests by Dr. Viviane Sziklas, a principal investigator who studies cognitive functions of patients who undergo epilepsy surgery. Dr. Sziklas plays a fundamental role in surgical decision. No surgeries are performed without her expert opinion on a patient’s cognitive profile. Moreover, Dr. Sziklas continues to assist patients after surgery and to provide support within their work or school environment.
Tommy was operated on by Dr. Jeffrey Hall, who had completed his neurosurgical residency at The Neuro, where he subsequently earned a Fellowship in Epilepsy Surgery under the guidance of Dr. André Olivier, the most experienced epilepsy surgeon in Canada. As neurosurgeon and teacher, Dr. Olivier has cared for thousands of patients who suffered from refractory seizures and has trained epilepsy neurosurgeons from around the world.
For two years afterwards, Tommy had no seizures. He continued with his studies in Ottawa until one day a seizure appeared, again triggered by stress and fatigue. Depending on the type of surgery and whether the surgeon was able to safely remove all seizure-generating brain tissue, patients might have post-operative recurrence of seizures or some cognitive side effects. Doctors cannot accurately predict what kind of post-surgery outcome a patient will have, but based on the seizure focus location and on the extent of resection, they can arrive at a good estimate before the decision to operate is made.
Brought back to the Neuro’s epilepsy monitoring unit, Tommy was still not having seizures after many days of monitoring. In such circumstances, doctors wean the patient off medication, which increases the likelihood of a seizure. Although Tommy finally did have a seizure being off-meds, Dr. Kobayashi and her colleagues decided that a second surgery was not recommended at that time. Instead, Tommy could do well by taking optimized medications and by managing his energy and stress levels.
“It was definitely an adjustment that can be difficult at times,” he says. “I can’t over tire myself or get too stressed out. I can’t go a full weekend with little sleep and expect to be fine. Epilepsy is not always on my mind, but it’s at the back of my mind when I’m planning day-to-day things. It’s not a giant worry, just an adjustment.”
It helps, Tommy says, that his family, friends and girlfriend are understanding. Sometimes they will even gently caution him not to overdo things. Although he lives in Ottawa, he continues to see Dr. Kobayashi each year for a follow-up examination.
To read part two of Overcoming Epilepsy, featuring epilepsy patient Nicole Cresenzi, click here.