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Epileptic Brian Machin, shown playing with his 5-year-old son Rhys, had brain surgery in 2006. He hasn't had a seizure since. (Fernando Morales/The Globe and Mail)
Epileptic Brian Machin, shown playing with his 5-year-old son Rhys, had brain surgery in 2006. He hasn't had a seizure since. (Fernando Morales/The Globe and Mail)

Brain surgery is more than a last resort, epilepsy specialists say Add to ...

Brian Machin had an epileptic seizure as he cuddled his newborn son in his arms. He was sitting in a chair and didn't loosen his grip on baby Rhys, but he and his wife, Cynthia, worried they wouldn't be so lucky next time. His seizures were getting worse and medication wasn't working.

"I remember thinking, 'What have we done?' " Ms. Machin said. "I was afraid, but how could I tell him not to hold the baby?"

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In February, 2006, Mr. Machin had a type of brain surgery that offers relief from seizures for people with drug-resistant epilepsy - and he hasn't had a seizure since. He no longer needs medication and hasn't suffered any memory loss, and not only can he play with Rhys, but he and his wife had a second child.

The problem? While the surgery has an 80-per-cent success rate and could allow thousands of Canadians to live fuller lives - to work and socialize without fear that an electrical storm in their brains will leave them incapacitated - experts say it is one of the most underutilized interventions in modern medicine.

"Patients are told, 'You don't want to go there,' " said Mr. Machin's surgeon, Taufik Valiante, who works at the Krembil Neuroscience Centre at Toronto Western Hospital.

An estimated one in every 100 Canadians suffer from epilepsy, and, of those, roughly one in four has seizures that can't be controlled with antiepileptic drugs. Surgery is an option for as many as half of these people. In Ontario, 10,000 people with epilepsy could benefit from brain surgery, Dr. Valiante said, but only 2 per cent get it. On average, they have been suffering from epilepsy for 22 years.

Many physicians still consider it a last resort, Dr. Valiante said, despite compelling evidence that if someone doesn't respond to two or three types of medication, they should be assessed for surgery.

The situation is similar in the United States and other industrialized countries, said the University of California's John Stern. But it is difficult to understand why.

A number of factors, including human nature, come into play. Some still think of surgery as dangerous, although techniques have improved dramatically. And so many different medications are now available that doctors and patients want to try many combinations and dosages, Dr. Stern said. Cost can also be an issue.

It requires a team of specialists to screen patients and perform surgery, Dr. Valiante said. The epilepsy unit at Toronto Western has expanded as part of a University Health Network plan to increase services for people with epilepsy. It handles about 50 therapeutic surgeries a year.

To be eligible for surgery, a patient's seizures must originate in one part of the brain, and researchers are developing increasingly sophisticated ways to determine if this is the case. Dr. Valiante and his colleagues use brain imaging as they would a microscope, to probe regions of the brain for damage that signals the source of a patient's seizures.

They have developed a new technique that uses a powerful magnetic resonance imager to look for scarring and shrinkage in a sea-horse-shaped structure in the brain called the hippocampus. About 70 per cent of the operations Dr. Valiante performs every year to treat epilepsy involve removing the hippocampus.

Mr. Machin had his first seizure as an infant and, after his epilepsy worsened a decade ago, he was prescribed 26 different drug regimens. Doctors in his native Saskatchewan told him brain surgery wasn't an option, but after he moved to Toronto in 2003, he learned it was. An MRI showed significant damage to the hippocampus on the left side of his brain.

To confirm all his seizures originated in the same spot, he spent three weeks in an epilepsy monitoring unit, in which electrodes on his scalp tracked the electrical activity of his brain and a video camera recorded his seizures.

Mr. Machin, then 32, had second thoughts about having the operation, which involves a small risk of memory loss, hemorrhage or infection.

"Both Cyndi and I were terrified of possible memory loss," said Mr. Machin, a tax consultant. "It's one of those things … what the stats say really doesn't mean anything; they are removing a piece of your brain. You think about what happens if I can't remember anything after the surgery, or what if the tests weren't 100-per-cent accurate and that is a big memory area, and tons of other things."

Most of his seizures didn't involve losing his balance or falling down. It was more his ability to communicate. "I would say something, but what I wanted to say and what would come out were completely different things," he said.

But the more serious grand mal seizures were coming more frequently, and caused him to lose consciousness.

So he opted for the surgery - which proved so successful that he and his wife decided to have a second child, Kain, now 2. Today, Mr. Machin can wrestle with the boys, toss them in the air, spin them around and even take them swimming.

"I don't have to worry about picking them up, having a seizure and dropping them," he said. "I would strongly recommend that other people look into this opportunity. As you go through the testing, there is no guarantee that it will be right for you, but if you meet the requirements, the benefits are amazing."

Follow on Twitter: @AnneMcIlroy

 

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