Whitney Goulstone’s life changed when she involuntarily dropped her five-week-old son during an epileptic seizure.
“I felt like the worst person, the worst mother ever,” she said. “I couldn’t imagine what I’d just done to my son.”
Goulstone was diagnosed with epilepsy at age 19 after she had her first tonic-clonic, or grand mal, seizure. She had no idea she had actually been having less severe seizures since she was 13.
“Epilepsy is this condition where you have recurring unprovoked seizures,” said Dr. Danielle Andrade of the Krembil Neuroscience Centre. “A seizure is an abnormal electrical discharge in the brain.”
Epilepsy is a disorder that can start at any age, but symptoms are not always obvious.
It’s the third most common neurological disorder in adults after stroke and Alzheimer’s disease, according to University Health Network.
Each day, about 42 people are diagnosed with the condition, according to the organization. That’s about 15,500 people a year, on average.
Doctors have a couple dozen drug therapy options to give to their epilepsy patients. Around two thirds of epilepsy cases are treatable with medication, but Goulstone’s was an exception.
When medications failed, she started exploring the option of brain surgery, an alternative treatment for those with drug-resistant epilepsy.
Surgery an option for patients who don’t respond to medication
“The people who are the most difficult to treat with medications actually benefit the most from surgery,” said Dr. Taufik Valiante, who performed surgery to remove a part of Goulstone’s brain. “We can offer an individual up to approximately 80 per cent chance of being seizure-free following surgery.”
The procedure is not without risks, but Goulstone says she would have taken any chance to improve her quality of life.
“I felt like a worthless human being, really,” she said. “I was housebound, my husband had to work from home. When I went into the surgery, I had five medications, I was in a wheelchair, and it wasn’t getting better, nothing was working.”
Goulstone says her epilepsy had been manageable until she became pregnant, and then stress and sleep deprivation increased the frequency of her seizures.
Then the day came when a seizure caused her to drop her infant son.
“I was just putting him into his bassinette just next to the bed, and just right then and there, my hands just dropped,” she said.
The child suffered a skull fracture but made a full recovery, and things were getting worse rather than better by the time Goulstone became pregnant a second time.
She says she could not be left alone. While pregnant, she fell down a flight of stairs during a seizure, and she started wearing a helmet.
“So they put me into the Epilepsy Monitoring Unit to see what was going on and see if I was going to be a candidate for surgery,” she said. “We really needed a long-term plan. My quality of life was just non-existent at that point.”
Risks involved in brain surgery option
The surgery in question involves pinpointing where in the brain a person’s seizures originate, and then removing that area of the brain, if possible.
“Not every kind of epilepsy can be treated with surgery,” Dr. Andrade said. In some cases, the risk of damage to the patient’s brain is too great.
Dr. Valiante says memory damage is the most common cause for concern, but Goulstone’s surgery was difficult for a different reason: her seizures originated between areas of her brain involved in motion and vision.
“For epilepsy surgery, it really depends on where the seizure is coming from,” said Dr. Valiante. “(Goulstone’s) surgery ran the risk of paralyzing her leg.”
Goulstone was determined to see it through, however, and a tangerine-sized lesion was successfully removed from her brain.
Goulstone says her first memory post-surgery is of Dr. Valiante testing the sensation in her toes while her family stood around her.
“In two days I was out of the hospital and I haven’t had a seizure since,” she said. “That was November 25, 2010.”
Now, more than two years later, Goulstone wants people affected by epilepsy to know that surgery is a viable treatment option rather than a last resort.
“There’s about 10,000 individuals in Ontario who could benefit from surgery,” Dr. Valiante said. “We want people not to believe that it’s a panacea, that it’s going to fix everything, that it’s for everybody, but that it’s an important option for people who have epilepsy.”
Dr. Valiante says the World Health Organization considers epilepsy to be the most common serious neurological disorder in the world, affecting around 300,000 Canadians.
The Krembil Neuroscience Centre is at Toronto Western Hospital.
Special:Focus Ontario – Inside Epilepsy
Part I: Inside Epilepsy