Monday, November 23, 2009


I thought the W5 episode was awesome and ironically seemed to follow the same path as my blog! It will bring so much exposure that anyone with MS will hear about it and I’m sure be over the top with excitement just as I was when I first learned about CCSVI. I am sure that MS clinics and societies will be overwhelmed with phone calls today. I knew that cautious scepticism would be the MS society’s position but to discourage people from being tested is just wrong. First of all, you can’t just go and get tested, so far I don’t know of any facility in Canada other than Dr. Haacke that is ready to do the testing and I know that if any are that they have been overwhelmed with enquiries and willing volunteers. Hopefully we can keep the pressure up so that an accepted protocol like Dr. Haacke’s can begin to spread around Canada. Demand for these tests is going to be huge so this may pose a problem but we have to keep the heat on and demand that our MS clinics and research bodies take this seriously. I spoke with the Calgary MS clinic as recently as last Thursday and was met with complete scepticism and negativity regarding CCSVI although I’m sure that wasn’t an official position. My point is that everyone with MS should contact their neurologist to enquire about CCSVI so they are inundated with requests and feel forced to act. There’s no way we can let this break through take years to get past the trial stage and become available to those of us suffering. As Dr. Zamboni said, MS is a progressive disease and people can’t afford to wait around while our bodies deteriorate.

Having said that, we must also realize that this is only part of the big picture, there is so much more to learn. Reading through some of the info being posted on MS internet forums makes you understand that there are still many questions and unknowns regarding CCSVI diagnosis and treatment. We must be cautiously aware that this is not going to be the answer for everyone but it does give us a running start. I do believe that this breakthrough will spawn many new discoveries and kick start new research ideas across the world; I think this is the beginning of the end of multiple sclerosis! Now that CTV has broken this story I expect American media will jump on board and maybe things will begin to snowball. The internet fervour has already begun to heat up and where there’s a new story, there will be coverage.

CTV came by my house today for an interview with Avis Favaro to get my reaction to the news. Even though it wasn’t new to me I’m still totally excited and even more so that the story got national exposure. It was quite short but I think will air on the six o’clock national news.

BREAKING NEWS...I was just told that the MS society will be opening up funding for CCSVI research in January! Now that’s what I’m talking about, look how quickly their position turned! Once we get enough people on board and can put enough pressure on our medical and research bodies, things will really start to move.

Thursday, November 19, 2009


I met for a consultation today with Dr. David Williams; he’s actually a dentist but the man studying the new MS treatment I referred to in my last blog. It’s a simple concept on the face of it but very complicated in the details. I always try to research or fact check any information before I include it in a blog, I don’t want to be responsible for any misinformation but I do encourage correcting comments. In my last blog I made a statement that may have inferred W-5 wanting me to keep quiet about CCSVI but the reference was only in terms of posting an airdate until the station had confirmed it. W-5 has done a great job searching out and reporting on MS research and advancements and I do commend them for raising awareness on many issues in an unbiased manner which I don’t speak of much when talking about the media. So I was careful not to talk about Dr. Williams work, I just didn’t know enough about it. After today I know quite a bit thanks to a very thorough explanation and demonstration with a skull showing how the bones move etc. but way too detailed for me to reiterate it. The simple basis of his theory is that an incorrect bite and grinding of teeth can cause bleeding, pressure or other detrimental changes in the brain. There is a very complicated interrelated series of events that occur between jaw bones, facial and temporal muscles and bones and our brain. Essentially what he has found is that by stopping the damaging and hidden effects of grinding teeth, MS symptoms have abated. He has been working on this theory for over ten years but I think he’s only studied around 30 MS patients however they have had some astounding results.

For some people just stopping the bleeding has been enough but for others the same positive results have not occurred or at least not to the same extent. He believes that in some of these cases the blood can’t drain and so the problem worsens. He has been studying Dr. Zamboni’s work and will be inviting him to Canada to explain and discuss this research. He believes this is a small part of a much bigger puzzle that we are now finally beginning to understand. With the basic principles that are now being proven, scientists and doctors from across the spectrum can begin opening up a whole new world of ideas and treatments. If only it were that easy, unfortunately it’s not. There’s a lot of science here and without a road map it’s very difficult to understand. I’m hopeful that Dr. Williams can put together some information and websites that can explain things better than I can. He is trying to talk with neurosurgeons or specialists with the brain and scull because it will take more expertise to really start understanding things and he seems quite aware of how difficult it can be to get a research trial set up.

In the meantime why not give it a try; at least I’ll stop grinding my teeth. He’s got a pretty cool set up for taking a mould of your mouth and teeth so he can understand exactly how your bite is working. At least it’s a procedure that should be covered by dental benefits so it won’t cost me a bundle. It is possible that I could notice a difference very quickly like Dr. Williams has seen in the past but I won’t get my hopes up. I am very curious to see if I can recognize a difference in the next six months but I’ll remain positive. As I get more figured out on Dr. Williams’s findings I’ll post again.

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.