Monday, November 16, 2009


I’ve got some new developments in the CCSVI discovery and as each week passes I’m hearing more encouraging news. I’ve still not been able to garner any solid information out of Stanford other than confirmation that the cost is $80,000. There are still no published results but I am hearing good news through my involvement in CCSVI online forums. There is a lot of anecdotal evidence of the success of this treatment. One of the early patients to undergo the procedure at Stanford whom I’ve mentioned has shared a lot of information with me. His name is Lew and his blog is linked with mine for anyone that is curious to learn about his experience. Lew just returned from Stanford for his 8 week follow up and reports that everything is great, his stents have set in perfectly.

Many improvements are being claimed due to the procedure but the one that most interests me is relief from fatigue. Fatigue issues are probably my biggest problem and to gain a hand up on this symptom would improve my life immensely! Lew tells me that he normally has to be pushed through airports on a wheelchair but on his last trip to Stanford he walked the entire time and had extra energy to boot! When he was required to walk he would normally have to use his cane but he didn’t even bring it with him on his last trip. He’s told me how he was able to rake leaves from his yard for over an hour which is something he wouldn’t even have considered a few months ago. His gait has improved substantially and when he does get worn down, his recovery time has been cut significantly. The exciting part about his improvements is that his MS is in the progressive stage like mine.

When I first learned about CCSVI I contacted Avis Favaro from CTV to see if she had heard about this new development and she informed me that they had and were already shooting a W-Five episode on it. Kudos to Avis and CTV for finding out about it before I did and basically before it was known by almost anyone in Canada. They flew to Italy to check out Dr. Zamboni’s work first hand as well as Stanford, her impression was that there is a lot more science behind this development than other ideas that have been proposed. She wanted me to keep this quiet until they had a firm air date which has now been confirmed for Saturday November 21st. W-5 will present the report at 7 PM EST across the CTV network, again at 12 PM Sunday on CTV News Channel and also on their website: Hopefully this will open up a lot of minds and ambition in the Canadian medical system because there seems to be very little going on in Canada.

I tried to contact my neurologist to discuss CCSVI and knowing I wouldn’t reach him by phone I sent an email. He replied saying that under Alberta Health guidelines he is not allowed to use email for any form of patient contact and that a nurse would contact me to set up an appointment in December after my MRI was done. A nurse did phone me to arrange an appointment but also to inform me that I was wrong in trying to circumvent their normal procedure for contact with a doctor. It almost felt like I was being scolded but I wasn’t interested in an appointment, I just wanted to meet for a coffee and have a quick chat. I will now have to wait until December 17th to talk with him.

I have registered with Dr. Emery’s office at the U of A to be enrolled in the program that will be testing for CCSVI but it won’t be up and running for a couple of months. Apparently there is a similar study being conducted by a Dr. Katherine Knox at the Saskatoon City Hospital in a couple of months as well. As far as I know these programs will just involve diagnostic testing but I haven’t heard anything on the procedure to repair the blockage once found. This procedure is now being referred to as “The Liberation Treatment”. It is this instance that will make me very frustrated and angry with our medical system. When asked the question before regarding leaving the country for stem cell treatment or why we have to wait so long for access to new drugs I could see the government’s reasoning behind their cautious policies. However, if it turns out that I’ll have to wait years or have to find a trial in order to have the procedure done I’ll be furious. This is a relatively simple operation performed every day for the heart with perhaps some subtle differences. It’s pretty simple, if you know there is a blockage in the vein then fix it, it’s not like we don’t have the technology! To have to leave Canada for this procedure and pay $80,000 is exactly what the anti-Obama health care lobby loves to hear. Well I’d love to make noise about it here if it comes to that!

I’ve just recently come across another new MS treatment that has its own amazing story and it’s local to Calgary. Coincidentally the theory behind this treatment is directly supported by Dr. Zamboni’s work. They have not released anything publicly yet but I have spoken with the doctor and have an appointment to see him this week. I don’t know how much detail he would want me to publish at this time so I’ll expand on this in my next blog. I won’t make it too long before I post again.

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