MS Patients Need Answers..but we will not take medical advice from MS Society Co-Ordinator

This is such a well written piece, I HAD TO SHARE and  hopefully broaden the range in which Mary's message is heard/read.

Posted by Mary Berukoff on August 25, 2010 at 2:14pm at

http://ccsvi-ms.ning.com/profiles/blogs/ms-patients-need-answersbut-we

Letter to Editor…in response to article, Berukoff Brothers aware of Risks, published in Trail Daily Times Aug. 17, 2010

MS Patients Need Answers…but we will not take advice from a MS Society Co-ordinator

First, my twin brothers, Matt and Dan, who had treatments in Mexico for their CCSVI, are doing very well.

We will share more of their scans, procedures and results when they return.

Second, we cannot understand why Lonnie Facchina, Coordinator of the MS Society’s Kootenay chapter, made several negative statements about our trip without talking with us first. It was the journey of our lifetimes prepared with careful research and instead of supporting and wishing my brothers well as MS patients, they were knocked down to the Society’s ground floor. In fact, your area of expertise is not medical advice about venoplasty. In fact, in my opinion, it is why the MS Society, playing the role of research scientists and doctors, is also dragging down the Canadian medical system in reference to one of the most exciting medical breakthroughs in Multiple Sclerosis in decades.


Now please rationalize these statements to our family and I’m sure the public would be interested in these answers because whether the MS Society is on track or not, medical history is being changed around the world and Canada is a non-participant in treatment protocols...because the Society approves research for pictures but no actions. I sincerely hope there was no information drawn from the recent Albert Health Services bulletin now described as incomplete, full of false claims and fear mongering.

Statement: a “rogue clinic in Albany, New York”
Question 1: What qualifies a clinic to be called rogue and who can make this kind of judgment call? For example, Matt and Dan’s doctor in Mexico has 24 years experience as one of their top vascular surgeons. Is he a rogue doctor because he has extended a hand to help them and 17 other Canadians with congested veins? Could the term “malpractice” be extended to doctors who know their patients are suffering from venous anomalies and do nothing about it because Health Boards cry “controversial and unproven?”



Statement: “venoplasty is prone to failure...venal collapse”...one patient’s veins constricted out of 4 cases you know about.
Question 2: Would most people agree that a 75% success rate in good blood flow is more successful than drugs where the standard rule is 9% effectiveness in randomized trials? Currently, many cardiovascular surgeons now use 15 to 20 mm balloons with better results than Dr. Zamboni’s protocol of 10 mm balloons. The fact is that every day 75 venous angioplasties are done in many parts of the world (over 2000 procedures done so far) and this daily number continues to increase. You may or may not agree but there have already been “statistical improvements in cognition and motor function”, and MRI’s confirm fewer new brain lesions.

 Statement: “clinics are popping up everywhere and you have to pay a lot of money. The MS Society doesn’t like that.”
Question 3. Why are so many people talking about how the MS Society is fomenting this rebellion under the sentiment of protecting us with more scientific trials that do not include treatment? How can doctors gather data without treatment of blocked veins and follow up? The non-medical MS Society has several high-priced lobbyists who strangely seem to overpower real doctors’ rights to do their jobs as vascular surgeons. They even seem to overpower government regulators in order to approve CCSVI within the public healthcare system. What an illogical, sad and hurtful reversal of order for Canadians with MS and Canada’s Health Care Budgets? The good news is that many politicians are starting to listen to their constituents as they should be.

Statement: “the Berukoffs see the MS Society as pandering to big pharmacy and administrative bureaucracy.”
Question # 4: Is this wrong as shown with information from the MS Society’s own website where six drugs are approved as therapy...nothing else. This is the greatest injustice and betrayal of trust because the MS Society has no other options for treatments besides drugs versus a walk-in mechanical procedure. One of the drugs listed is Tysabri. The latest news account from Biogen, the biotech company that produces this drug, has reported 5 more cases of brain infection with Tysabri patients which brings the total number of cases to 63 as of August 4 and the number of deaths remain at 12. The regulators say that the “benefits of the medicine outweigh the risks.” Be honest. The term “risky” best describes which situation…a procedure performed under local anesthesia where most patients are discharged within 1 or 2 hours or taking Tysabri for life?

Lack of optimism about a “cure” was mentioned. After 60 years of drug pandering, is there anything that even comes close to the treatment of MS with CCSVI that hopefully can replace current drug treatments. How exciting would that be...except, maybe for the neurologists!


We do share ONE agreement.

We need more trials to help standardize clinical procedures among investigators. There needs to be a more global perspective to document the prevalence of venous problems with MS conditions versus healthy individuals with no restricted blood flows.

We need more after care and follow up measurements of neurological assessment of the central nervous system, along with certain measures of disability and restriction in daily life whether used for drug or endovascular therapies.


We need more clinical evidence to assess the long-term effects of these venoplasties in restoring normal blood flow which in effect may slow down or even halt the inflammatory and demyelinating processes.

But these clinical trials and treatments should be done in Canada by our own well qualified vascular surgeons and interventional radiologists. New specialists should be trained so we can take our rightful professional place at the top of the research and progress. We need to be active participants in International Societies for Neurovascular Diseases rather than trying to reinvent the theory. Currently what some might consider third world countries now hold the crown while, in Canada, non-medical lobbyists bind doctors’ hands and make research rules. As only non-medical expensive lobbyists, the MS Society must not stand in the way of doctors and let them do their own research and treatments. Let Canadian doctors shine on the world stage and celebrate the healthy progress of their patients.


Stop the absurd situation where a MS Society co-ordinator, well meaning as she may be, rather than supporting MS individuals, berates their choices for health freedom. Even more absurd is that this situation is being played out on a national scale where Canada’s renowned Medicare system is sadly dragging its feet.