B.C. still behind in Parkinson’s brain surgery, patient says

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 neurosurgeons 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 British Columbia plans to double the number of so-called DBS surgeries, up from 36 in the last fiscal year to 72 in 2018-19 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 eighthour 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 currently on the wait list 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 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 multiple 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 self-care 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 speech-detect 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.”

Alicia Wrobel, spokeswoman for the Parkinson Society of British Columbia, said patients in some provinces have little wait time for deep brain stimulation surgery.

Saskatchewan has “virtually no wait list with three qualified neurosurgeons,” she said, adding Alberta has a wait list of six months and employs two neurosurgeons.

Christine Sorensen, vice-president of the BC Nurses Union, said she fully supports shorter wait times and more access to surgeries for all patients but there aren’t enough nurses to care for them.

In a contract ratified last month, the union negotiated a so-called working-short premium requiring employers to pay all nurses on a unit an extra $5 per hour when adequate staffing levels have not been met.

“It’s unique to B.C. and it’s a very innovative idea,” Sorensen said. “It is our goal that the employers will hire more nurses so this penalty will not be paid. Nurses don’t want additional money, they want the nursing staff present in order to provide safe patient care.”