Toronto, ON – March 5, 2018 -Today, EpLink – The Epilepsy Research Program of the Ontario Brain Institute begins their campaign to promote Ontario’s new guidelines for epilepsy care. Developed with the support of Critical Care Services Ontario (CCSO), these evidence-based recommendations aim to improve the quality of care and access to different treatment options, including brain and nerve stimulation, diet therapy, and brain surgery. Approximately 1 in 3 people living with epilepsy will continue to have seizures despite taking anti-seizure drugs. The guidelines indicate, however, that surgery may be effective at reducing seizure frequency and in some cases, eliminate them completely.
In 2012, before the guidelines were developed, it was estimated that only 2% of eligible candidates in Ontario underwent surgery, and a lack of clinician awareness about surgery was identified as a contributing factor. For those with drug-resistant epilepsy, surgery offers a greater chance of seizure freedom than continuing to take anti-seizure drugs alone.
Lindsay Yeo, a young adult living with drug-resistant epilepsy, underwent surgery in November 2017 and has been seizure-free ever since. Surgeons removed part of her left temporal lobe, the area of her brain where seizures were occurring. “Before surgery, I was lucky to have two weeks without any seizures, and some days I could have just one seizure, or up to 15-20. It always varied and I never really knew what was coming,“ said Ms. Yeo, “I’ve been twelve weeks seizure-free, and I’m starting to feel more comfortable about day-to-day activities, including being less worried about crossing the street and having a seizure without warning.”
For Ms. Yeo, the decision to have surgery was a difficult one, and involved multiple rounds of testing, support groups, counseling, and talking to people living with different kinds of epilepsy. Despite this long process, she is glad to have had seizure surgery, saying it was “better late than never” and feels hopeful for the future: “I’m continuing my pre-surgery lifestyle habits of getting enough sleep, minimizing stress, and getting moderate exercise so that my seizures are minimized – surgery is not a 100% guarantee of that so I try to do my part,” she says, “While I am still healing from surgery, I am starting to think about positive aspects of life going forward, such as potential job opportunities.”
“Epilepsy surgery should never be considered a treatment of last resort”, said Dr. Carter Snead, a Paediatric Neurologist at The Hospital for Sick Children, “The Ontario Epilepsy Guidelines and supporting resources can help people with epilepsy learn more about what treatments are available, and where to go for the next step in their care.”
In collaboration with CCSO and the Epilepsy Implementation Task Force, who created the original guidelines, EpLink developed a patient version of the guidelines to encourage people with epilepsy and their families to become active partners in their care. With these guidelines, people living with drug-resistant epilepsy will be more aware of the most appropriate treatment options, and be able to make an informed decision about seizure surgery. Moreover, through promotion of the guidelines, EpLink aims to have an increased number of referrals to epilepsy specialists and comprehensive specialty centres, where people can receive individualized therapy more quickly. A person living with drug-resistant epilepsy who continues to have seizures, even having one seizure per year, has the right to visit a district epilepsy centre or regional epilepsy surgery centre and consult with a specialist.
To learn more, please visit www.ontarioepilepsyguidelines.ca.
EpLink is the Epilepsy Research Program of the Ontario Brain Institute. EpLink’s mission is to reduce seizures and improve quality of life for people with epilepsy through research. To support us or to learn more, go to www.eplink.ca or follow us on Twitter and Facebook.
Communications Lead, EpLink