After two hours in recovery following a medical procedure, Lana Dziengielewski, who was diagnosed with the degenerate disease Multiple Sclerosis in 1997, got out of the bed and walked to the bathroom without her cane which accompanied her every step for the last two years. Exactly eight weeks later, the 39-year-old mother of two was sitting in the Record-Gazette office in a self-proclaimed state of continued disbelief around the fact that 95 per cent of the debilitating symptoms she began struggling with at the age of eleven, were gone.
"Do I still have issues? Sure I do," Dziengielewski said, stressing that the procedure, Called CCSVI Treatment (which stands for chronic cerebrospinal venous insufficiency)
is not a cure to MS.
"But to get back quality of life is a blessing right there. I have two teenage sons who have missed out on so much because of me. Now, that's just gone."
The procedure Dziengielewski underwent sprung from the research of a vascular surgeon from Italy, Dr. Paolo Zamboni, which suggests that there may be a relationship between a constriction of veins in the neck and MS – groundbreaking in the sense that MS had generally been thought of as a neurological rather than a vascular disease.
But a way of doing things that may conflict with past research, invites controversy
and hesitation – Dziengielewski had to travel to New York for her transformational
surgery, as Canada has not yet approved the procedure for use.
In essence, Zamboni's theory is that the veins in the neck of a patient have narrowed so much that when blood drains from the head, rather than continuing on and flowing throughout the body, it goes back up and deposits iron in the brain. By the surgeon widening the veins with a balloon (called angioplasty,) proper blood flow can occur.
"Right away when I heard about it, it made sense," Dziengielewski said; since the onset of her symptoms, she always felt pressure in her neck.
After contacting the Albany Medical Centre and playing the waiting game for several months, she had the surgery in December.
"There's no more MS fatigue," she said. This symptom was the worst she said, as she could sleep for 12 hours and still feel tired. She described it as a heavy full body suit, and experienced it every single day.
"Instantly that was gone. Wiped away. And the colours are so bright. Before it was like living in a fog and now everything has more definition."
She is disappointed CCSVI Treatment is not yet allowed to be practiced in Canada.
"I think it's sad – angioplasty is done in Canada a 1,000 times a day," she said, and added that the designation of the surgery being "experimental and controversial" needlessly scares people. And the cost to have it done in the U.S. ran Dziengielewski $6,800 plus the cost of travel, though she said it was "totally worth it" and only wishes it could have been done sooner as to allow her to have spent more quality time with her sons as they were growing up.
Through growing pressure from the MS community, the treatment is being examined both federally and provincially, though it will be a slow process.
Since mid December, the Alberta government committed $1 million for a three year observational study that will commence in spring. The goal, according to a government news release, "is to determine the safety and patient-reported impact of CCSVI treatment procedures."
And though just one year ago Alberta Health Services (AHS) issued a statement of position deeming the surgery a mere hypothesis needing further studies and an assessment of risk, spokesman Bruce Conway said AHS is now waiting on word from the provincial
government to adjust their plan surrounding CCSVI.
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