Patient says B.C. still behind in Parkinson's brain surgery after announcement


VANCOUVER – At 36, Gina Lupino felt her right arm and right foot stiffen and the tremors began to play a drum set on a percussion band. She would see four neurologists in the next year and a half before she knew she had Parkinson's.

Her latest specialist has recommended deep brain stimulation surgery last year because she experienced extreme fluctuations in how her body responded to medication, which sometimes disappears too soon and at other times does not absorb anything.

On Tuesday, Lupino said she was excited to hear that British Columbia plans to double the number of so-called DBS surgeries from 36 to 72 as part of an expanded UBC Hospital program.

However, she was worried about the long waiting lists compared to other provinces such as Alberta, Saskatchewan and Ontario.

"One of the things I've seen is to move to another province just to get this procedure, having to establish residence and a life there. But you can imagine how disturbing it is for my work, my professional life, for my family, "said Lupino, a lawyer specializing in patent, trademark and copyright intellectual property rights in the United States.

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B.C. aims to reduce waiting time for Parkinson's patients who need brain surgery

Dr. Christopher Honey is the only neurosurgeon in B.C. who performs the eight-hour invasive procedure that is done while the patient is awake to target a specific area of ​​the brain.

Health Minister Adrian Dix said the expanded program will mean that another doctor will help replace the patients' spent batteries, each implanted in the chest of a patient as a pacemaker, while the province works to recruit another neurosurgeon.

Dix said 70 patients are currently on the waiting list for deep brain stimulation surgery.

Lupino said that number does not tell the whole story because many people like her – "postpartum patient for DBS" – could wait up to four years just to make an appointment with a neurosurgeon before waiting another year for the operation.

"The backlog of surgery is one thing, but the delay is actually getting the consultation," she said.

"The concern we have 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 that patients should return several times and this is particularly costly for those who does not live in Vancouver.

"For people with disabilities and fixed income who depend on the help of family members for basic lifestyle and self-care tasks, coming from somewhere far from B.C. to UBC is really heavy."

Lupino considers himself fortunate because he has his own advocacy practice and can accommodate his limitations by working at home or using speech-detection software to write when the right hand does not cooperate.

"It's hard to walk, it's hard to just change. You feel involved in molasses or in a pool of water and trying to run, dress, bathe or do basic tasks. "

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

Saskatchewan "has virtually no waiting list with three qualified neurosurgeons," she said, adding that Alberta has a six-month waiting list and employs two neurosurgeons.

Christine Sorensen, vice president of BC Nurses Union, said she fully supports shorter waiting times and more access to surgeries for all patients, but there are not enough nurses to care for them.

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

"It's unique to BC and it's a very innovative idea," Sorensen said. "It's our goal for employers to hire more nurses so this penalty will not be paid for." Nurses do not want additional money, they want nursing staff to be present to provide safe patient care. "


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