Mother of woman with seizure disorder highlights struggle for VNS procedure, hopes conversations stem from story
Anne Currie and her daughter Megan are hoping the Ontario government will take action to help end the struggle they are going through to obtain a new vagus nerve stimulator (VNS), an implant essential to helping control severe seizures Megan endures.
Megan is currently on a waiting list to have her VNS replaced, after the battery began to fail last month. A fully functioning VNS decreases the occurrence and severity of seizures by sending electrical stimulation to the brain. Without a fully functioning VNS Megan’s health and well-being are in jeopardy, her mother says.
Megan, 25, first had a VNS implant when she was 11. Anne says it was a struggle to get the procedure performed, but the difference the implant made to her quality of life was outstanding, she says.
“Almost immediately we noticed a decrease in the severity, frequency and length of Megan’s seizures,” Anne says.
“The first device lasted only three years but the revision was done without question because the doctors at the Hospital for Sick Children recognized the positive impact the stimulator had had on Megan’s life.”
After three years when Megan’s VNS needed replacement, the procedure was performed.
Arrangements were made between Toronto Western Hospital and the Hospital for Sick Children for Megan’s health to be scrutinized, with the expectation that the stimulator would be replaced as needed, says Anne.
“This was small comfort, as we were thrust into the adult world of health care,” she says.
Then, about a month ago, the number of Megan’s seizures began to increase. A medical checkup revealed this was due to the battery in Megan’s VNS failing after nine years.
Megan’s neurologist advised her and her family that he would speak to a neurosurgeon about the issue. Anne then received the news that due to funding cutbacks there would be no replacement VNS for Megan.
While Ontario Health Insurance covers the VNS procedure, there’s a five- to 10-year waiting list, due to tight hospital budgets. Further to this, there’s a challenge to have the province allocate a specific budget for the VNS technology.
This is where Anne wants to see a change. One way to help create this change is to start conversations on the issue of VNS procedure wait lists and funding. Epilepsy Ontario welcomes your comments or suggestions.
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