Long waits for deep brain surgery worry Parkinson’s patient
VANCOUVER — At age 36, Gina Lupino felt her right arm and foot stiffening and tremors starting as she played a snare drum in a percussion band. She would see four neurologists over the next year and a half before learning she had Parkinson’s disease.
Her most recent specialist recommended deep brain stimulation surgery last fall because she experienced extreme fluctuations in how her body responded to medication, which sometimes wears off too early and other times doesn’t absorb at all.
On Tuesday, Lupino said she was excited to learn the B.C. government plans to double the number of so-called DBS surgeries, up from 36 to 72 as part of an expanded program at UBC Hospital.
However, she was concerned about long wait lists compared with other provinces such as Alberta, Saskatchewan and Ontario.
“One of the things I’ve been looking at is moving to another province just to get this procedure, having to establish residency and a life there.
“But you can imagine how disruptive that is to my work, to my professional life, to my family,” said Lupino, an intellectual property lawyer specializing in U.S. patent, trademark and copyright prosecution.
Dr. Christopher Honey is the only neurosurgeon in B.C. who performs the invasive eight-hour procedure that is done while a patient is awake to target a specific area of the brain.
Health Minister Adrian Dix said the expanded program will mean another doctor will help replace patients’ worn-out batteries, each of which is implanted in a patient’s chest like a pacemaker, as the province works to recruit another neurosurgeon.
Dix said 70 patients are on the waitlist for deep-brain stimulation surgery.
Lupino said that number doesn’t tell the whole story because so many people like her — “a poster-child patient for DBS” — could wait up to four years just to get a consultation with a neurosurgeon before waiting another year for the operation.
“The backlog of the surgery is one thing but the backlog is actually getting the consult,” she said.
“The concern that we’re having is that because DBS is such an intensive procedure it’s not just a one-day thing that you’re in the hospital,” she said, adding patients must return many times and that’s particularly expensive for those who don’t live in Vancouver.
“For people who are on disability and on a fixed income and depend on family members’ help for basic lifestyle- and selfcare tasks, getting from somewhere in remote B.C. to UBC is really burdensome.”
Lupino considers herself fortunate because she has her own law practice and can accommodate her limitations by working from home or using dictation software to write when her right hand won’t co-operate.
“It’s hard to walk, it’s hard to just move. You feel like you’re embedded in molasses or in a pool of water and trying to run, or get dressed or shower or do basic tasks.”