It’s controversial, unapproved and looked at with skepticism but for some it works and many argue it is live-saving.
Chronic cerebrospinal venous insufficiency (CCSVI) is a term developed by Italian researcher Paolo Zamboni to describe compromised flow of blood in the veins draining the central nervous system. Ever since, people with conditions such as multiple sclerosis have been flocking to other countries to have a procedure done which opens the blood veins and relieves many of their debilitating symptoms.
Former East Sooke teen Nicole Bottles, who has been suffering from advanced Lyme disease for the past three years, went to California in July to have the procedure done.
First she had a MRI in Vancouver and her mother Chris Powell said, “sure enough she had blocked veins.”
“Ever since I saw (something about) this in 2009 I wondered if that could help Nicole,” said Powell.
Powell found a doctor in California who was willing to perform the costly procedure because he had a best friend with Lyme disease.
They call it “liberation therapy” and that is exactly what Bottles experienced.
In the recovery room Nicole stated she could feel her legs for the first time in three years.
It was a “crap shoot,” said Powell, but there was a 33 per cent improvement. Nicole’s short term memory improved as did the warmth in her hands and feet.
“My head feels unstuffed,” said Nicole to her mother shortly after the procedure. She also said her legs felt stronger. Nicole has been confined to a wheelchair and movement and touch are painful.
While it may not seem like a big deal to some, Nicole walked (with help) to the sand on the beach in California.
“She walked 20 feet to get into the sand, she loved it, then she walked back to the path and into the chair,” said Powell.
What Nicole got from the procedure is hope. Hope that one day she will be able to live out her life just the same as anyone else, without the restrictions, pain and loss of freedom she is experiencing. There is a chance the procedure will not work in the long run and there may be complications, but they are willing to go through with it.
Powell has become an advocate for CCSVI and during a recent screening of the film on Lyme disease, “Under Our Skin,” she talked with Lana Popham, MLA for Saanich South, who talked of presenting a Private Members Bill to the Legislature relating to Lyme and protecting doctors' rights to treat patients with Lyme disease without fear of harassment.
Ottawa has reversed course and has approved trials for the controversial procedure CCSVI. Nicole’s pain doctor in Duncan, Dr. Bill Code, who calls himself “the rebel with a cause,” is trying to educate people and other doctors across Canada about the possible benefits of CCSVI. Dr. Code has MS.