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Friday, July 7, 2017 9:05 PM | CCSVI in Multiple Sclerosis shared Canadian Neurovascular Health Society's photo. Volg link
It's been 7 years since Sandra Birrell's venoplasty for CCSVI. Here's her very important story. Please share, and help others learn about the vascular connection to MS. Joan
Canadian Neurovascular Health Society
Seven years ago today I underwent a specialized form of angioplasty that targeted stenosis (constrictions) in both my jugular veins and my azygos vein. My hope was that I would immediately start walking better and maybe even jumping (shout out to Denise Manley, who inspired many with her post-angioplasty jumping!). Yes, I did start walking better, but that benefit was compromised in the months ahead by injuries and knee surgery. What I didn't expect or hope for (because I didn't know these things were even possible) were the benefits to my eyesight, my balance, my finger dexterity, my thermoregulation, my swallowing, my blood pressure, my bladder function, and my digestion. These have not only stayed significantly improved, but most have continued to improve through the seven years subsequent to my angioplasty as I transitioned to a healthier diet and lifestyle.

So, what is my answer to those who claim the angioplasty does not work for people with multiple sclerosis? How do I respond to media headlines that claim one UBC study debunked the entire theory proposed by Dr. Zamboni behind this simple vascular procedure? It's personal, not only for me but also for millions of people worldwide.

And that is the most frustrating and saddening part of this celebration of my seven years of dramatically improved health. There are so many others out there who have not experienced these or any other benefit. Some tried angioplasty, but for whatever reason, the benefits didn't occur or were short lived. The majority have not been given the opportunity to even try to see if angioplasty would help. Many believe the headlines that there is no hope behind this theory and all hope lies with pharmaceuticals or commercially driven stem cell therapies. Also, they are led to believe that hope rests with the neurology community and not the vascular specialists who, time and time again, support a neurovascular theory of multiple sclerosis and other related illnesses and conditions.

As one of my good friends, Christopher Alkenbrack, said, "this is not hope, this is science." The science continues to mount that taking care of our blood vessels, taking care of oxidative stress and inflammation, and taking care of our blood flow lead to marked improvements in the health of those fighting illnesses typically classed as purely neurological. I believe the improvements in me have already changed my disease trajectory and lifespan. I went from choking six or more times a day to not choking once, not even one time since my angioplasty in 2010. That change alone saved me from needing a feeding tube, which was likely only two years away, and greatly reduced my risk of aspiration pneumonia, which can be deadly. This improvement cannot be written off as a spontaneous remission because it happened immediately following the angioplasty. My choking problems dated back ten or more years at that point and were steadily progressing in severity and frequency throughout that period. This improvement has lasted seven years without a single lapse; therefore, it cannot be a placebo. This is science – the science of improved blood flow and neurovascular health.

So how do I respond to headlines that say the CCSVI theory behind the angioplasty procedure has been "debunked"? I respond as a patient who, after living 38 years with this illness, knows a little bit about multiple sclerosis. I respond as a patient advocate who continues to support research and education in neurovascular health. I respond as a researcher and teacher of research science, as someone who knows that you cannot close the book on such a complicated illness and promising theory with just one study. Each individual who had this type of angioplasty is a case study worthy of examination. I say let their voices be heard and their stories told. I say let's support researchers who continue to drive the science forward and doctors who acknowledge the status quo is not working for many, many patients. I say let's support system wide change so research falling outside conventional funding and pharmaceutical channels is given public funding to keep it as unbiased and transparent as possible. There's a multibillion dollar industry that wants the status quo to stay firmly in place. It will take courage on all levels to change this framework.

So, today, I reflect on all of this as I enjoy not having to wear my glasses, not having to race for a bathroom, not having to worry about dramatic spikes in blood pressure, not having to worry about choking with every mouthful or even through the night on my own saliva, and not having to worry about becoming motionless if I get overheated on a hot day. It's a paradox that many of us who sought improvements to our MS after many years or even decades of steady progression live with every day. How do we celebrate our improvements while others cannot? I have hope – hope that the chance for similar improvement comes to everyone who fights this illness every day. In the meantime, I continue to push forward with my own health and to raise awareness of this science to educate others.

Sandra Birrell, PhD
President
Canadian Neurovascular Health Society
http://www.cnhs.ca
@CNH_Society