Like all of those suffering from MS, or with a loved one with MS, I have been following the latest news with interest. Once again, the bait of possible liberation treatment availability in this province/country is dangled in front of our noses, and once again my phone is ringing and email box is filling up with excited and hopeful people.
In Saturday’s edition of the Brandon Sun, the article mentions how excited that Manitoba’s Health Minister, Theresa Oswald, is for Winnipeg to be a part of yet another study. Only one proposal was received for a Manitoba-based trial, and it was refused based on the failure to meet safety and ethical criteria. Now I have to ask myself: wouldn’t it be interesting if we knew just what that criteria is? I know I didn’t see that published anywhere. I would think that any hospital in Winnipeg or Brandon would certainly fit the bill, and if they don’t, is that kind of scary to anyone else?
The liberation treatment is an out-patient procedure that is basically just a plain old angioplasty — angioplasties that are done in hospitals on a daily basis on the arteries of heart and stroke patients in order to clear blockages. The liberation treatment clears veins of blockages, allowing proper blood flow from the brain to resume. On a recent episode of “The Nature of Things,” David Suzuki referred to this condition (known as CCSVI or chronic cerebrospinal venous insufficiency) as a venous abnormality.
Now, if I were suffering from any other type of abnormality (for example, cleft palate, six toes per foot, a big wart on the end of my nose, etc.) then the Canadian health-care system would be glad to help me out. Instead, I have abnormal veins. I know this for sure because I had an MRV (same as an MRI but on veins) done in Mexico prior to my own liberation treatment, and my jugular vein looked like a ball of yarn that I’d allowed the cat to play with. (If anyone would like to see the pictures, let me know. I’d be happy to show you either in person or by email)
For the US$15,000 that my family, friends, co-workers and the wonderful citizens of Brandon (some perfect strangers) donated to me to have the procedure, I was able to buy back the life that had been robbed from me by the symptoms of multiple sclerosis. I am thankful every day of my life for the caring of these individuals, and spend a lot of time helping others to raise the money needed for their own procedures. It is worth it! Every penny! Did I know it would work? No, but at that point in my life, I was injecting $1,400 worth of MS medications (recommended by my neurologist) that weren’t working either, so I decided to roll the dice. Gamble with my life, one might say.
Thankfully, I won this round, but if I have to have it done again, I would gladly go through the effort of raising funds again. I will not leave the state of my health up to politicians and the medical community to decide, and I don’t think anyone else should either.
We as citizens need to demand satisfaction from our politicians, our health care providers, the MS Society. MSers need help, and we need it now. We do not have time to wait around for five years worth of studies. The further our condition progresses, the more difficult it is to get it back. We have one chance, let us take it!
The CCSVI Foundation of Canada
Republished from the Brandon Sun print edition October 3, 2012