How One Young Mother Won Her Life Back From Epilepsy
Education and Advocacy Over 100,000 Ontarians are currently living with epilepsy. Daily seizures keep many from living the life they want to live, and too few are aware of the potential relief surgery can provide.
Whitney Goulstone was diagnosed with epilepsy at 19 years old, though she had already been suffering mild seizures for years. Over the next decade, her condition would prove non-responsive to medication and her seizures would grow steadily worse to the point where, while she was pregnant with her second child, she was having five to seven violent seizures each day. Her life had been entirely taken over by the disease. Whitney had long been told that she was unlikely to be a good candidate for epilepsy surgery, but she had to be sure. That’s when she went into the Krembil Neuroscience Centre at Toronto Western Hospital for an evaluation at their Epilepsy Monitoring Unit.
“My quality of life was just zero”
“Epilepsy defined me,” Whitney says. “I couldn’t go anywhere on my own. I wore a helmet for years. I was in a wheelchair. I couldn’t even lift my child. I was at the hospital so often that the doctor said my file never went back in the drawer. My quality of life was just zero.” The possibility of a surgical treatment was a ray of hope for her, a chance to bring some sense of normalcy back into her life.
“It’s been shown that their quality of life living with epilepsy can be improved simply by having this information and knowledge.”
The Epilepsy Monitoring Unit was able to localize Whitney’s neurological condition to a specific region of her brain. It turned out to be a rare variety of the disease and the location in the brain presented some surgical challenges, but the surgical team told Whitney that an operation was possible. This team included Dr. Taufik Valiante, Co-Director of the Epilepsy Program at the Krembil Neuroscience Centre who says that, though Whitney’s particular epilepsy may have been of a rare type, her story was all too common.
One Ontarian in a hundred is living with epilepsy
About one percent of all Ontarians have epilepsy and about 30 percent of those will find that, like Whitney’s, their condition does not respond to medication. That’s tens of thousands of people in this province alone suffering through personal versions of Whitney’s story. About half of these people would make good candidates for surgical intervention, but only two percent of those actually receive the surgery.
“There’s a feeling overall that surgery is always the last resort,” says Dr. Valiante. “On average it takes a patient 20 years from their first seizure until they are finally referred for surgery, when we know that it only takes about two years to determine if someone is not going to respond to medication.” Only by educating people with epilepsy about the high success rates and low risks of modern surgical treatments can they be fully empowered to choose the treatment plan that is best for them. “Even if someone ultimately decides they don’t want surgery,” says Dr. Valiante, “it’s been shown that their quality of life living with epilepsy can be improved simply by having this information and knowledge.”
A new strategy of epilepsy care
For those who do choose a surgical treatment plan, the new Provincial Strategy for Epilepsy Care seeks to dramatically increase access to epilepsy care centres around the province by increasing their capacity. The Krembil Neuroscience Centre specifically has recently received funding to double the number of beds in the Epilepsy Monitoring Unit, dramatically reducing wait times for evaluation and surgery.
This improved access to epilepsy surgery holds the promise of an entirely new life for thousands of Ontarians like Whitney Goulstone. It’s been four years since Whitney’s surgery; four years without a single seizure. I can hear her tearing up. “This surgery gave me my life back,” she says. “I can hold my children again.”