August 27th 2011
To the government of Canada and any open minded neurologists
It is hard to believe that it has been just about two years since Dr. Zamboni’s theory on CCSVI and its possible link to MS first aired on W5.
I will never forget the night of November the 20th 2009. Our phone started ringing off the hook with friends and family asking us if we watched the W5 broadcast about the new groundbreaking treatment for MS. That night I was on the computer trying to get as much info as possible into this treatment. I felt that the Multiple Sclerosis Society and our Canadian Neurologists would be all over this new discovery, so, I told my wife lets just wait and see.
Two months later January 2010 it was time for Jenny’s appointment at the MS clinic. We were both excited to speak with the Neurologist about the liberation treatment for blocked veins. We told the Neurologist that Jenny would gladly take part in any study pertaining to this new treatment. The neurologist said they are a long way from any studies regarding the treatment. Jenny has just about run out of options with treatments for her MS as it has progressed to the point of her requiring home support. I helped Jenny back into her wheelchair and we headed back home disappointed.
May 2010, a friend of mine who has MS told me about CCSVI on Facebook and how he was going to Costa Rica for the Liberation treatment. Well, hold on and buckle your seat belt the battle that should never have had to been fought by caregivers and their loved ones is in full swing. It did not take me long to become educated on the venous system and its function. Jenny and I now know the Liberation treatment as a venoplasty procedure to correct CCSVI. Jenny’s diet has changed and she is taking vitamins all to promote healthy veins, enhance blood flow and reconstruct her immune system after it has been torn down from years of immune suppressing pharmaceuticals.
August 2010, Jenny is booked for a (MRV) Magnetic Resonance Venography in San Diego to see if she has CCSVI. The battle continues as those labeled with MS send letters to the government, doctors, MSSC and media pleading for treatment in Canada . The backlash of negative studies from the neurologists continues to be published as they fight for their so-called autoimmune disorder. Canadians that have no other options for treatment continue to leave Canada for a procedure that is preformed daily for dialysis patients but is deemed too risky for MS patients.
September 2010, it is confirmed Jenny has CCSVI and she will have a venoplasty procedure on September the 14th. Before the procedure Jenny, Noah and I were suffering from the toll that this disease inflicts on a family.
Jenny’s Daily Meds before Venoplasty
Oxybutynin 10mg daily,
Citalopram Hydrobromide 30mg daily
Tizanidine 2mg daily
Oxazepam 30mg daily
Copaxone 20mg daily
August 2011, the turf war continues with neurologists bringing up any negatives they can hype up with the help of the media. The MSSC is still pushing teen burgers to help pay for their over the top salaries and advertising. Then, they throw a few dollars at CCSVI study’s to help fund the same neurologists that have discredited CCSVI from the beginning.
Jenny’s Daily Meds one year after Venoplasty
Citalopram Hydrobromide 20 mg daily
Oxazepam 7.5 mg Bedtime
My wife is now taking about $2000.00 less in medications monthly and going to her
doctor half the amount then one year ago. Big healthcare savings.
When will the government start trials on treating CCSVI for people with the neurologically owned label known as MS?
Why do we need safety studies for Venoplasty when it is has been preformed daily in Canada for years? Just make sure when looking at the safety of the procedure you look at the thousands that have had no complications, not the 5 that did!
We need after care provided for those who have received treatment outside of Canada as the Venoplasty plane leaves for another Country numerous times daily. There have been thousands of positive outcomes from having this procedure with few negative results.
We only hear about the negatives from our loving caring neurologists who keep sharing with the in-depth reporting media personal that report equally on both sides of the story.
When this battle is finally over it will make for a great movie and the truth will be told, but for now I just want to see the conclusion. For me I have the love of my life back, my son has his mom and my wife has her independence. The fight will not end until everyone suffering from improper blood flow gets treated.
Sincerely
Lorin Powell, Husband in love all over again:)
Nanaimo BC