Don’t discount Zamboni, advocate says

Andrew
Andrew Robinson
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Michael Duffy rappels down Atlantic Place in St. John’s Saturday as part of an Easter Seals fundraiser. Photo by Keith Gosse/The Telegram

Last May, St. John’s lawyer Michael Duffy required a cane to walk and a fistful of drugs to make it through the work day. By 5 p.m., he was exhausted.

Saturday, he rappelled down the side of Atlantic Place as part of an Easter Seals fundraiser.

A new international study bolstering genetic evidence that multiple sclerosis is rooted in an abnormal immune system has raised questions about the validity of the costly, and much debated, liberation procedure. But Duffy — an advocate and beneficiary of the treatment — said the public should not ignore the real impact it’s having on the lives of people like himself.

“I like to describe it as a very powerful treatment that helps an awful lot of people, and most who have the treatment benefit from it,” said Duffy, who underwent the procedure in Bulgaria last June.

“Is that a placebo? I don’t think so. The benefits are real, the sensory improvement is real, the strength improvement, balance and energy is real.”

The study, published in last week’s issue of the science journal Nature, found 29 new genetic variants common in MS sufferers, compared to those free of the disease, and confirmed 23 others previously linked to MS.

Many of those genes play an important role in the functionality of the immune system, with some implicated in other auto-immune disorders, including Crohn’s disease, Type 1 diabetes and rheumatoid arthritis.

Zita Kavanagh-Taylor, chairwoman of the St. John’s-Mount Pearl chapter of the Multiple Sclerosis Society of Canada, said the discovery is positive news and will likely lead to new studies on MS.

“Any progress is excellent,” said Kavanagh-Taylor, who was diagnosed herself two years ago.

Duffy said while all research into MS is important, he said it is disingenuous for people to use data from one study to unfairly debunk or discredit the liberation procedure.

“I’m very protective over it,” he said, being careful to stress that he applauds all studies on treating MS.

The procedure, based on a theory by Italian vascular specialist Dr. Paolo Zamboni, unblocks supposed obstructed neck veins to alleviate symptoms and potentially halt the progressive neurological disorder. It is not offered in Canada.

Zamboni’s theory believes narrowed neck veins — which he calls chronic cerebrospinal venous insufficiency, or CCSVI — are a likely cause of MS.

 

Immediate difference

Duffy, who was diagnosed with MS almost 20 years ago, said the procedure is painful, but only for a few seconds. He was kept immobile for 12 hours to reduce bleeding, and was discharged the following day.

“The next day, everything was clearer visually, I had more energy, and I was not as tired as I used to be.”

He still has periodic sensory deficits, but feels closer to being the person he was prior to being diagnosed with MS. Duffy no longer takes any medication.

“I can say that I have a new husband,” said Sherry Duffy. “He’s not falling asleep on the couch at 6 p.m. every evening. He has more energy than I do most days .... It’s pretty rough when a lot of household things that should be for couples were my responsibility, but now he’s back.”

A past leader of the local chapter of the MS society, Ted Warren, left his role with the group last fall over the national society’s opposition to starting clinical trails. However, Kavanagh-Taylor said the society is not giving up on research into CCSVI.

“Anything that shows any bit of hope, we’re not giving up on it,” she said.

Following the federal government’s announcement of funding for clinical trails on CCSVI in June, the Multiple Sclerosis Society of Canada released a statement applauding the move, calling the topic of CCSVI “an important one for the MS community.”

The provincial government has been involved in a study initiated last fall involving 40 participants, some of whom have had the liberation procedure and others who have not. It aims to determine the impact the treatment has, if any, on the physical and mental status of MS sufferers.

A spokeswoman for the Department of Health and Community Services said it expects to have preliminary results from the study in several months.

“At this point, it is too early to determine what role the results of this study will play, if any, in future decisions related to the treatment of MS patients in Newfoundland and Labrador.”

 

arobinson@thetelegram.com

Organizations: MS society, Multiple Sclerosis Society of Canada, Department of Health and Community

Geographic location: Atlantic Place, Bulgaria, Mount Pearl Newfoundland and Labrador

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  • Maxine David
    August 18, 2011 - 19:49

    I was had the procedure on the very day in Bulgaria that Mike did, and I saw the transformation with my own eyes! It was amazing! The four of us who had the procedure that day met , and we all had improvements! It is definatey something to continue researching and improving so even more people can be helped. It is more of a risk to do nothing to help ourselves.

  • Linda Rousay
    August 17, 2011 - 20:33

    Mr. Duffy is not just a fluke. I have had the procedure and am a totally new person who two years ago lived in a wheelchair. No neurologist I ever went to ever told me they were certain that the auto immune theory was valid. "it appears that it "may" be an auto-immune problem is as far as they would speculate.If I lived in Canada I would still be waiting for a study rather than enjoying my second chance at a normal life.That other factors are involved is evident, yet CCSVI deserves far more credibility than Canada is prepared to allow.

  • Shirley renshaw
    August 17, 2011 - 16:32

    It's all good and fine that studies and research are being done by the Canadian Multiple Sclerosis Society (CMSS). They have had many decades to do these "massive" groundbreaking finds! But as they have been doing this work they have also been working very hard to disprove CCSVI. They have been wasting time, money and lives doing so. They have managed to snatch up all things that is CCSVI … such as the research (2.4 million), the National registry of who knows what (1/2 million), this survey being done by Alberta MSS (1 million), The trials that was announced by the feds end of June 2011 (God know how many millions will be used). THIS IS WRONG, WRONG. The only TRUE EXPERTS dealing with CCSVI is the Vascular Community, the and the Intervential Radiologists (FSIRs/Irs). THIS IS NOT A NEUROLOGICAL ISSUE. IT IS A VASCULAR ISSUE. MS is NOT part of these trials, research, registries and surveys. They have not been given a chance to report the TRUE information because the NEUROLOGICAL COMMUNITY decided it was their turf. If they want to do these studies etc. then give it to the proper EXPERTS. Otherwise this is once again a stall tactic to avoid the approval of a simple, minimal evasive angioplasty done thousands times a day across the world for the last 30 years. The ONLY reason for opposition from the NON EXPERTS is because the Internal Jugular Veins are involved. Well try to explain on why are thousand who receive kidney dialysis have THIS SAME (CCSVI) procedure done thousands of times as all other angioplasty? MS is a multi billion business where as CCSVI IS NOT. This does not involve BIG PHARMA …. so who is losing out and calling the shots really? THIS IS THE ONLY REASON FOR ALL OF THIS OPPOSITION. AND the only responses to any of this should NOT come from NON EXPERTS.

  • SANDRA
    August 17, 2011 - 11:05

    Way to go on your treatment success...I take a different look on these so called new studies and there validity. I had the liberation treatment it has worked for me and I have no doubt there is a vascular connection...Why is there a new drug in the works that centres around the vascular part of the brain? because they have always known.I dont discount anything with new studies but I do discount ones who dont look genuine and who have the ms society backing them or neurologists because then it means something else...the ms society chose to fight the ccsvi theory right from the beginning and why? they certainly push the crab drugs and others knowing these do not work. new studies are showing the crab drugs do nothing...no meaningful 20 plus years of research were needed for that. I just wish the ppl so against ccsvi would understand this is just one treatment and they dont need to worry there heads over financial losses because we will always need a neuro..when the financial pay offs from drugs becomes more important than the patient we have a serious problem..and this goes on all over the place with all diseases...and shame on those involved.

  • Leslie
    August 17, 2011 - 09:42

    The only trials that I know of are as Lori says, diagnostic trials. There has already been trials that proves this works, but again not in Canada. If they do trials it can't be done by a Neurologist. They don't know the vascular system and it will be a study of disproval.

  • Big Sleepy Mac
    August 16, 2011 - 22:53

    One correction for the record, the procedure, based on the initial theory by Italian vascular specialist Dr. Paolo Zamboni, is now actually based on an internationally agreed diagnosis of CCSVI confirmed by special ultrasound or an MRI which detects blockages in at least 2 veins. It uses a fairly simple angioplasty treatment to unblock the detected obstructions in the neck veins to alleviate symptoms and improve patients quality of life. It is not a cure but it appears to be more effective than the much more expensive new drug based disease management treatments (DMTs) and with few side effects. It appears to be effective in 2 out of 3 MS patients who experience improvements ranging from dramatic to moderate. It must be noted that 1 out of 3 patients do not experience any improvements based on the standard patient tests. There are suggestions that the treatments may halt or slow MS and other progressive neurological disorders such as Parkinsons, Alzheimers, and some forms of dementia but more studies, some currently going on around the world, are required to confirm or disprove the suggestion. In the meantime, Canadian MS patients and other patients must go outside Canada for the treatment at their own expense. Way to go Michael Duffy!

  • Christopher ALKENBRACK
    August 16, 2011 - 20:05

    JADE – You wrote – “ There have been decades of well-founded research that demonstrates the genetic and auto-immune link. “ The research on the animal model of MS (Experimental Autoimmune Encephalomyelitis) is nothing like the human form of MS, yet all of their research and drugs are based on this faulty model. MS has NEVER been proven to be autoimmune. I`m sorry to hear that the CCSVI treatment was less than effective for your husband. I can name dozens of personal friends in Nova Scotia who have benefited from the treatment. You say that you were “anti-MS Society”. I think that it speaks volumes that Ted Warren, former chapter president resigned. I too used to be a chapter president in Atlantic Canada, and no longer support the mission of the MS Society of Canada. As for the $ 1 million for clinical trials, this was only going to be given “if and when the studies proved positive !” However, I personally believe that the flaws in these studies will prevent them from bringing forth robust data that is needed to start clinical trials. A Bristish Heart Surgeon with MS was quoted as saying, “I believe that when a new treatment has practically only minor possible complications (as reported by Zamboni with venogram and angioplasty) and a good potential for benefits, as opposed to the pharmachological treatment rich in harmful side-effects, THE NEED FOR RIGOROUS SCIENTIFIC DOUBLE-BLIND TRIALS IS NONSENSE.” (Dr. Gianfranco Campalani – UK Heart Surgeon) I was the 2nd Nova Scotian treated for CCSVI 15 months ago. Though not all of my symptoms have left, I have experienced a quality of life that no MS medication provided me in the last 19 years that I`ve lived with this disease.

  • Bob Smith
    August 16, 2011 - 19:38

    How about using a drug that expands the arteries? There was just a study in m.s. mouse model that showed Viagra was able to improve mobility. Liberation without surgery.

  • Edward Murray
    August 16, 2011 - 15:25

    Let's hear it for studies, including genetic ones that are finding some overlap between the MS genes and those possibly associated with venous malformations: BMC Med Genet. 2010 Apr 28;11:64. Custom CGH array profiling of copy number variations (CNVs) on chromosome 6p21.32 (HLA locus) in patients with venous malformations associated with multiple sclerosis. Ferlini A, Bovolenta M, Neri M, Gualandi F, Balboni A, Yuryev A, Salvi F, Gemmati D, Liboni A, Zamboni P. As far as I know, Ferlini hasn't issued a snarling press release claiming that her study disproves the unproven auto-immune theory of MS.

  • Half Pint
    August 16, 2011 - 13:24

    I go for my procedure on the 21st of next month in California!!!!!!! I just want to be able to start a normal stream of pee again OH YEAH and WALK A STRAIGHT LINE.... WISH ME LUCK EVERYONE

  • Karen Copeland
    August 16, 2011 - 10:13

    From MS couch bump to venoplasty to leaping from tall buildings! WTG Michael! Way to Blood(y) Flow Go! I have a dream that all Canadian MPs and Senators will see a film of this rappel, be as astounded and impressed as I am and will vote for Bill S- 204 so that all of us MSers will have the option of having this treatment and the possibility of a more normal and more productive life.

  • Jade
    August 16, 2011 - 09:47

    Unfortunately, Mr. Duffy, it's not just one study. There have been decades of well-founded research that demonstrates the genetic and auto-immune link. I don't doubt the positive effects some (not all, including my own husband with primary progressive) have felt after treatment, but I do believe all research is valuable, not just one stream, in hopes my husband will live a better life after CCSVI treatment did not work for him. I was anti-MS Society when I first heard of CCSVI, but I have come to realize the wisdom in their stance on good, proven research. That's why they, themselves, have invested $1 million into clinical trials.

    • Lori Batchelor
      August 16, 2011 - 13:08

      When you say: "The provincial government has been involved in a study initiated last fall involving 40 participants, some of whom have had the liberation procedure and others who have not" I would really like to know what study is being referred to. Canada is not performing any "treatment" trials--only diagnostic studies to check for prevalence in people with MS. And wasting a lot of time, I might add--let people with MS have some hope and allow treatment of venous angioplasty now! Others with vascular conditions can be treated, why not people with MS?

    • Big Slepy Mac
      August 16, 2011 - 23:04

      I am very sorry that your husband was one of the approximately one third who do not experience any improvements. The question of course is why not? Unfortunately, I am not aware of any studies or theories that have tried to explain that. Certainly more studies are required to answer these and many other questions.