Picture a man who is in pain every day. His pain in his feet and legs are analogous to muscle cramps. Picture this man living with this pain every hour of every day for almost two years. The man is Bill Feasby of Uxbridge, ON. Bill has MS.
Multiple sclerosis (MS) is a complex disease. While it is most often diagnosed in young adults, aged 15 to 40, we know that it also affects children. The impact is felt by family, friends and by the community. MS is unpredictable, affecting vision, hearing, memory, balance and mobility. Its effects are physical, emotional, financial, and last a lifetime. There is no cure. (see http://mssociety.ca/en/information/default.htm for more information on the debilitating effects of MS). A promising medical procedure to stop the development of MS and possibly improve the lives of its recipients has been developed by Dr. Paulo Zamboni, a former vascular surgeon and professor at the University of Ferrara in northern Italy. Dr. Zamboni began wondering about iron deposits improperly collecting in the brain. Using Doppler ultrasound, he began to look at the veins in the necks of his MS patients. He discovered that almost 100% of his patients had blockages in the veins that are supposed to flush blood from the brain. The blood was refluxing: going back into the brain’s grey matter where it sets off a host of reactions that may explain the development of MS. Dr. Zamboni called this vein disorder Chronic Cerebrospinal Venous Insufficiency (CCSVI). Dr. Zamboni developed a procedure for opening the veins to permit normal blood flow. Because the surgery freed the blood flow, the procedure was dubbed “The Liberation Treatment” by his medical team.
Bill heard about CCSVI from the internet but mostly from a program on W 5. He knew some of the people involved in the show and the follow-up show. He states, “Until that point there was really no hope for people with MS.”
So, why isn’t this procedure readily available in Canada? Good question! Why would Bill’s neurosurgeon say to him: “Don’t go anywhere near it. It’s just a hoax.”
Through another medical clinic Bill sought the advice of a doctor who is not associated with MS; he’s actually an Internist. He arranged for Bill to be tested by Dr. Chris Guest (supervised by Dr. Sandy MacDonald) in Barrie at Barrie Vascular. Bill states: “I was initially in line up there to have the procedure. He had done the procedure on six people and then got pressured into shutting down by the hospital because they didn’t want the procedures being done there anymore.
Following that he booked a flight to Poland and had a date of November 17, 2010 to have the procedure done. He states: “What I decided to do, based upon the advice of other people who had this procedure was to get as many irons in the fire as I could and take whichever one came first. There were a number of local hospitals starting to do it a little bit, but as soon as it became known that they were doing the procedure, they got shut down immediately. I received a call from India on a Tuesday, that if I wanted to be involved in a field trial and if I could be ready to go by the weekend, then they would take me. That meant getting visas and dropping everything else. Three days isn’t a lot of time to get ready to go to India. We managed to do it, got over there and had the procedure done.”
The procedure is quite simple. It is like angioplasty, but on your vascular side. They do a venogram, sending a little wire around to find the blockage. They said his veins were 70% blocked. He actually had reflux blood flow. That’s where the capillary action and the iron deposits come from. You are awake when they do the procedure. It is a 15 minute process. They go into your jugular. Your jugular veins are supposed to be 13 to 17 mm wide. Both of Bill’s were only 3 mm. The surgeon opened them up. “It’s not a blockage like normal blockages” says Bill. “It’s actually a malformation and where it comes from, no one knows.”
Everyone tested at the clinic in Barrie has a blockage. “It’s really early in the process, but for me it’s worth taking the risk. I have a letter from a hospital stating that they do a venogram for various ailments, but not for MS.” Again, why not? Perhaps Canadian vascular surgeons may reflect "the Canadian culture that needs to be so cautious that we need to validate everything we do. And validation takes time—time is not a commodity among those of us with MS.”
I contacted the MS Society of Canada and a Dr. Stewart Wong (Senior Manager, Communications and Media Relations, Marketing & Development, MS Society of Canada, Toronto, ON) gave me the following two websites:
Canadian fact sheets:
The US based studies fact pages:
The US based fact pages state: “The Society shares in the public urgency to advance the understanding of CCSVI as quickly as possible. In order to pursue new and unanticipated leads in MS, the National MS Society established the Rapid Response Fund. An example of this fund in action is the global outreach and expedited review process that led to the more than $2.4 million which the US Society, in collaboration with the MS Society of Canada, is devoting to the funding of seven initial grants that focus on the role of CCSVI in the MS disease process. Work has already begun on these grants.”
According to Bill, none of the seven chosen doctors have had any previous experience with CCVSI and he wonders, “Why?”
I contacted the Federal Ministry of Health about what they were doing regarding CCVSI and informed me that such matters were decided upon at a provincial level Since. I live in Ontario, they referred me to the College of Physicians for the Province of Ontario. I contacted the College of Physicians and Catharine Clarke (Sr. Communications Coordinator, Policy and Communications, College of Physicians and Surgeons of Ontario) replied: “In circumstances where a specific form of treatment does not have sufficient clinical evidence to support its use, the College would expect physicians who wish to perform this type of procedure to consult with a teaching hospital or academic facility, and convene a research ethics board to oversee the clinical trials of the procedure. This process allows patients access to new and developing treatments while ensuring that patient safety is not compromised in any manner.”
The treatment Bill received didn’t cost him anything because he was part of a trial group. He had to pay for travel. There are companies now that charge a set fee that includes the cost of travel, accommodation and the procedure. There are all kinds of numbers floating around as what the fee is and some of them are insane. Bill states: “The guy who arranged for me to go over is also in the business of making arrangements and he charges about $12 000. While I was in the hospital in India, I never got the feeling that I was being treated for the money. They were very concerned and very genuine people. I was the first Canadian they had ever done.
Prior to the procedure, Bill was only able to stand for only 20 minutes. Now he can stand for hours. He and his wife take their dogs for 45 minute walks. Prior to this procedure, he wasn’t able to walk his dogs at all. He used to be in a tremendous amount of pain; primarily muscle cramping. The main pains you get from MS are nothing like non-MS pains. Bill states: “Painkillers don’t work on people with MS. My pain was like a cramp in your foot and your leg. Live with it for 24 hours a day, every day for almost two years. My MS doctors prescribed for me two very potent muscle relaxants. You would be taking anywhere of 8 to 10- of them a day. The flip side of taking these meds is that you can barely move. Since having the procedure, I haven’t taken any more of these meds and the pain has stopped. My balance came back. People with MS lose their sense of balance with their eyes closed or if in a dark room. “We simply fall over,” Bill says. “Before the procedure my wife had to put my pants and socks on me. Now, I can lift my legs and put my own pants on as well as my socks.”
Bill says, that he is massively better.” I don’t want to say I’m cured,” he says. Bill continues to spend $200 per day for a medicine that he injects for MS. Even Dr. Zamboni advises that his patients continue to take their MS medications. “If nothing else happens in my recovery,” he says, “I am happy because the pain is gone, but I hope I get back to where I was before MS took its toll on me. Some of the people with whom I’ve kept in touch and who have had the procedure say they’ve experienced considerable improvement in three to five months. For me, time will tell.”
We wish Bill continued improvement.
For more information on CCVSI see
This article was first published in the Uxbridge COSMOS, August 12, 2010.
For additional and updated information about CCSVI see:
1. Eastern Canada CCSVI Screening
Montreal, QC that are performing screening of CCSVI are at two locations:
- Westmount Square Medical Imaging
- Radiologie Ville-Marie
Both of these locations are accepting patients to be screened for CCSVI Westmount Square Medical has this service prominently displayed on their web-page.
Both locations are providing the Doppler screening procedure as defined by Dr. Zamboni. The cost for the procedure is estimated to be around $450 CAD, however if you are covered under an insurance plan you may be able to get the cost covered by your plan. 2. Buffalo Study
3. Clinical Trial to be Started in Albany NY
4. AMEDS is a new project focusing at providing a variety of advanced medical services with participation of highly respected and experienced medical professionals in Poland.
We are in the process of final formal arrangements aiming at starting the CCSVI medical examination and treatment services anytime between March 1st and April 1st.
NOTE: The above is for information purposes only. MS patients should always contact their doctor for medical opinions and advice.
Stan Taylor
