No benefits from Zamboni “liberation” MS treatment: Sullivan

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Susan Sullivan

This afternoon, Health Minister Susan Sullivan announced that there were no measurable positive results from a controversial treatment for multiple sclerosis.

The results are from an observational study done by the province into the Zamboni "liberation" treatment which an Italian researcher believed could alleviate MS symptoms.

Other medical experts have been skeptical about the treatment.

The province refused to fund the treatment, but in September 2010 the government put up $400,000 to do an observational study on the results of the disorder.

Sullivan said the study resulted in "no measurable, objective benefit."

However people enrolled in the study reported "physical and psychological well-being" as a result of the treatment.

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  • Sharon
    June 16, 2012 - 10:36

    @ Denise, if I was concerned about people knowing who I am , Why on earth would I use my REAL NAME? LMAO... I actually have a life that is the only reason why I havent had a chance to post. So the last name your using isnt familiar to me. I am just chomping at the bit to find out who you are.? I am not hiding behind a pseudonym, and I have no problem with others knowing who I am. I am proud of my stance, convictions and opinions, I do not hide, nor back down. **pls note: I never addressed a specific comment to any one person until others addressed me. I was stating my opinion as were all of you, regardless as to whether or not we agree or disagree the pathetic manipulation postulated by specific people is disappointing and childish. That being said I took the high road, that can not be said for some on this thread* Good Day!

    • Amanda
      July 06, 2012 - 20:51

      I have been reading the comments on here, and it seems the pro-ccsvi people are not the only zealots. I myself am going for this procedure next week. I am doing so after watching this controversy unfold for the past few years. Initially, I was very skeptical, since MS "cures" are so frequent. I admit, I am not fully convinced by the research. I am convinced by the anecdotal evidence, the very thing that has been called the "lowest form" of evidence. While I totally agree that it is problematic and unscientific, it is also (in at least a few cases) undeniable. There is no way in hell that the disappearance of a limp, which has been present for years, can be a placebo effect. To suggest so is insulting, and it makes me suspicious of those making such claims. Yet I have observed this situation, and just that response, occur. Nobody is standing in the way of finding a cure by supporting CCSVI. Minimal progress has been made in the past 30 years, despite millions in research. There are people exploiting the CCSVI controversy on both sides. The bottom line, is that nobody has the right to tell me what I can try to deal with MS. Likewise, I would not ask taxpayers to pay for a procedure which is so far unproven. Don't delude yourself though, the DMD therapies are just as dangerous in terms of the placebo effect and exploiting people. They provide a sense of false security for the recently diagnosed, who want to believe that disease progression is at least somewhat within their control.

  • Sharon
    June 16, 2012 - 06:34

    I just have to tell you all a great story! I had to have a picc line put in and had it done my an Interventional Radiologist at a prestigious hospitsl.hospital Well, during the procedure I asked the IR, "what are your thoughts on CCSVI as the cause of MS" here is the kicker, he replied "I was approached by some patients regarding it, however, the clinical data does not support the theory" he also went on to say" doubled blinded clincial studies need to be performed more diligently, which has yet to be the case"he continues " the mind and the placebo effect are highly influential in patient's wanting something to work so badly" keep in mind this is a INTERVENTIONAL RADIOLOGIST one of your demi G*ds of the Ccsvi movement. He concluded our conversation with this the eloquent statement"overall its malarkey, BS" Well thank you doctor for vindicating all I and thousands have determined by reading extensive research papers,literature etc.. regarding Ccsvi as being the cause of MS and balloon dilatation of the azygos or iiliac veins to abate MS symptoms. I tell you I had a banner day yesterday! :)

  • heather
    June 10, 2012 - 20:53

    Nina...you really wished MS on people? You obviously only care about yourself and have a cold heart. for you to wish this on people makes you inhumane. Also....all you pro angioplasty people...QUIT speaking for MS community. I have MS and want a cure....i think this whole theory was a way to exploit the MS community and put cash in pockets....just as bad as a ponzi scheme....you make me sick that you are prying on the desperation and health of your fellow mankind

  • nina
    June 10, 2012 - 13:24

    STILL FIGHTING CCSVI?? - OUR DYSFUNCTIONAL CENTERAL NERVOUS SYSTEM VEINS ARE RESPONSIBLE FOR OUR CENTRAL NERVOUS SYSTEM DISEASE. MULTIPLE SCLEROSIS - THE GOVERNMENT WANTS TO CONTROL THE DISEASE BECAUSE IT BRINGS BILLIONSSSSSSSS TO THOSE WHO PROFIT - YOU ARE DISGUSTING - STAY OUT OF OUR DISEASE - WE HAVE THE RIGHT TO HAVE WHATEVER PROCEDURE WE WANT TO ENHANCE AND SAVE O UR LIVES. I WISH YOUR FAMILY MULTIPLE SCLEROSIS.

  • heather
    June 10, 2012 - 07:42

    Hello people....MS does not mean you have blocked veins....hell most of us DO NOTICED... don't let your desperation for a cure persuade you to believe this will fix your MS.....CCSVI is a vein disorder....it is NOT MS...yes angioplasty is done everyday....but not on jugular veins in MS patients....please get your facts straight before generalizing....and who was it that said its not a yearly procedure? I know of many people who have undergone this more that 4 times in the past 3 years....each time getting progressively worse....and you want healthcare to pay for this? I love when people have nothing to say so they blame big pharmacy...please.)...say something intelligent....WE HAVE WASTED TOO MUCH DAMN MONEY ON THIS...WE SHOULD HAVE USED MONEY ON LOOKING FOR A CURE

  • Denise Baillie
    June 09, 2012 - 14:20

    Newfoundland's results are useless....Look at the article in "Neurology Reviews" about the 37th annual meeting of the Interventional Radiology Association: “"Results of the study were quite exciting and promising,” stated Dr. Mandato. “We can attest to significant physical improvements reported in greater than 75% of those with relapsing-remitting and primary-progressive forms of MS. Additionally, mental health scores improved in greater than 70% of individuals studied. People with secondary-progressive MS showed statistically significant improvements in both physical and mental health scores at a rate of 59% and 50%, respectively,” he added." "“Our experience showed that 95% of the individuals we evaluated had venous obstructions, supporting the concept that venous lesions are common in individuals with MS,” Dr. Ferral continued." More and more studies are collecting similar findings. This may not be a cure, but it is the first treatment that can provide significant improvement in the quality of life of people with MS and CCSVI and needs to be investigated and the procedure improved upon to provide permanent improvements if at all possible! It is valid science with very exciting and promising potential and it is highly unethical for the Canadian government to attempt to stall or even prevent examination of CCSVI and it's treatment!

  • Denise Baillie
    June 09, 2012 - 13:16

    CCSVI treatment is safer than liposuction, which is allowed in Canada; it is safer than at least 2 of the newest MS drugs that are prescribed in Canada. The new MS pill killed 15 out of 35000 people within 24 hours, and the drug I mentioned in my previous comment killed about 50 out of 95000. Approximately 30000 CCSVI procedures have been done worldwide and I have only ever heard of 3, possibly 4 deaths. Which of these options has better odds? Those of us who want CCSVI treatment are not going on blind faith! We have thoroughly researched it and find the potential risks are all but obliterated by the potential benefits! The most common MS drugs only have a 30% chance of MAYBE slowing the progression of the disease and offer no improvement. All the data worldwide on CCSVI treatment indicate about 30% experience significant improvement in quality of life, 30% experience some improvement and the remainder are not helped much if at all. A 60% chance of improved quality of life beats the heck out of a 30% chance of maybe ending up bedridden a little later! Then there is the monetary considerations. It would only cost about $5000 to treat a person for CCSVI in Canada. MS drugs cost $20000 or more per year; extended care and ER room visits for people with MS probably cost close at least $100000 per year per person; and I can only imagine the tax revenue lost when people with MS can no longer work and contribute to society...not to mention the cost of disability payments to support those people once they can no longer work! The information collected by the Nfld gov't is all but useless, because the procedures were done by many different methods by many different doctors in many different countries. No consistency = no scientific value. Treat us, observe us, and learn the truth!

  • Denise Baillie
    June 09, 2012 - 13:14

    I know several people who have had their CCSVI treated, and not only can you physically SEE the difference after they have been treated, there is not a single one of them that regrets having done it! This procedure is the first and only treatment (with acceptable risk) that is currently available for people with MS! Drs Modano, Siskin and others from Albany NY published a study in January of this year covering over 250 procedures and found only a 1.6 % risk of serious complications. Our Canadian government finds it perfectly acceptable to prescribe people with the poison that is Tysabri, which has caused a serious brain infection in over 250 people (in some cases leaving them a vegetable) and killing nearly 50 people. After approximately 30,000 CCSVI procedures done worldwide, I have only ever heard of 3 deaths after CCSVI treatment and stents were used in at least two of those cases, which does increase the risk somewhat. A study done by a group of neurologists in another country (I think Poland, but I'm not sure) who, like most neurologists, wanted to discredit CCSVI followed people for six months after treatment and they still found clinically significant improvement in fatigue and heat intolerance after those six months. Fatigue and heat intolerance are the two symptoms that have stolen my life more than any others! Up to 95% of people with MS have serious fatigue issues and heat intolerance is so prevalent that at one time they used to us a "hot bath test" to diagnose MS! What if these symptoms are not caused by our MS, but by our CCSVI? Don't we deserve the chance to find out? Don't MS doctors want the chance to get a clearer picture of this illness called MS?

  • Denise Baillie
    June 09, 2012 - 13:12

    Isn't it interesting how "Sharon" stopped commenting once some people who actually know what they are talking about and have had the procedure done started presenting the facts....I think we CCSVI Advocates know which 'Sharon' it was. The same one who has been spewing her bilious hate speech against people with MS who want this treatment from the start. I'd really like to know if she is perhaps actually Freedman or Savoie or is she just a pharmaceutical rep or just a troll?

  • Lee
    June 09, 2012 - 06:01

    Sharon, you are obviously either intellectually incapable of understanding the complexities of the issues you so confidently rubbish or you have read zilch about them. After wasting my time reading your feeble attempt to put forward a valid argument it appears to be a combination of both. So back off, go back to your woods, & stop wasting space with your vacuous & insipid comments that only serve to display to us all the fact that you are an idiot.

  • Robert Smith
    June 09, 2012 - 00:22

    Health Minister Susan Sullivan you are completely WRONG, what ever you base your judgement on or the statistics it is obvious you have not been out to meet or talk to the people CCSVI has helped. You see we are not looking for the total answer or cure to MS, we are not that nieve, we are just searching for a glimmer of hope, the hope you smash into our faces every-time press statements are published with heartless comments like "NO BENEFITS" as this piece of news should have been left alone, it is clearly from a study that is biased towards a study by neurologists and we know what they think about CCSVI. I trust you are struck down with MS but a lot of people who have MS are desperate as their lives are falling apart. You are in a high position where your decisions and comments can really hurt the people you represent and actions towards the MS community and your own Canadian people. Our Australian government have so far remained silent on the CCSVI issue and our people are wonderfully cared for under our health system, but still a steady flow of MS sufferers are getting the treatment via CCSVI-Australia. Have A heart Please (Modified for general Viewing)

  • Mary
    June 08, 2012 - 17:05

    To everyone that considers the Liberation procedure to expensive........Ms meds start at $20,000 per year and greater. Liberation is less and it does not happen yearly.........

  • Sharon
    June 08, 2012 - 13:34

    Mary, What exactly is disgusting? Is it the truth which is slapping all of you ccsvi zealots in face the problem? I said if you want research pay for it yourself. I want a cure and your standing in my way. How many studies have proven the disorder dubbed ccsvi has NOTHING to do w/MS. And since that is the case why should I as an MS pt have monies I donated go toward junk science? If you want research I am sure the geologist and the medical mapping Senator could help you ppl drum up more money, to of course bee disappointed. It will be a cold day in hell when the FDA allows this treatment to be used on MS patients LEGALLY. And I as an MS patient and the thousands who feel as I do will make sure of that. Good riddance to bad rubbish.. Have a lovely day!

  • Mary
    June 08, 2012 - 12:09

    Sharon..disgusting comments. Research the medical before you comment about about MS Liberation> how many ppl have their viens opened, stented due to heart disease, totally covered by the provinces, countries!! The blocked vien of MS is not any different. Did you ever consider the fact the blockage in the brain, spine or jugular is the cause of MS lesions, which causes the side effects to allow the medical world to shout MS... This blockage will eventually effect ones heart. Living with a untreated blocked artery, vien, because ppl are labelled with MS is DISGUSTING. The heart victim treatment works for some, but not for others. AND yes the ppl with heart heart blockages can get many treatments> FREE. Wake up!!

  • Sharon
    June 08, 2012 - 10:51

    So glad the FDA put out those safery regulations thats going to cut deep into the unethical and greedy docs who are performing this vein therapy. I can see them now writing retorts to the telegraph trying to dispel the findings. Good Lord buy a clue ppl, open your damn eyes and see this for what it is lies, lies and more lies... Looking forward to any and all goverments to stop funding for this ridiculous "treatment". If you zealots want to do research why dont you use the money that has been donated to all of your orgs and alliances? Why make tax payers pay for the research. Where is all the money from all of your orgs? You want the treatment YOU AND YOUR ORGS PAY FOR IT! Real simple. By law the orgs and foundations that support CCSVI must disclose publicly where every single cent was spent. I want to see the disclosure of these records? I bet my life you will see the truth then, nothing spent on research. Why? Because these orgs are stockpiling the money waiting for the bottom to drop out and close up shop, and live high on the horse in Bali while the poor slobs who supported them are left holding the bag. Do yourself a favor and pay no mind to the trailer park trash these you tube freaks and their pals push! BYE BYE CCSV lets usher in the age of appropriate research and stop this insane ideology. Your wasting time and money, pls step a side i want a cure and your in my way. Good day.. Sharon MS Warrior

  • Diane Duchesne
    June 08, 2012 - 08:15

    Are you for real Sullivan? Oh my you have had your head in the sand for a while eh?? Are you blind? I know what's wrong.....the pharmas & government are filling you up with green greed..........money if you don't understand!

  • Sandra Bennett
    June 08, 2012 - 03:13

    I read that Kuwait became the first country in the world where the treatment of CCSVI is explicity allowed by the medicical authorities and paid for by the state health system!! Also, CCSVI is being performed privately in 40 countries. So, if you have the money you can have this procedure done! This raises a question....are all these consultants diagnosing and performing this procedure wrong? Angioplasty is a common surgical procedure performed everday to widen veins and venuos pathology has been associated with MS for sometime now. There is a growing number of MS sufferers, who have been found to meet the criteria for CCSVI, who have undergone the liberation procedure and shown significant improvements in their symptoms and this was shown from the observational study as well. This is massive if you suffer with MS, as I do. I only recently heard about CCSVI and have done a lot of research to come to the conclusion that it is so obvious that further trials and studies are needed. Their is the potential for CCSVI as a treatment for MS, even if it is not a cure. Patients should be allowed the option to undergo an angioplasty if tests show abnormal narrowing of the veins even if you have MS. Unless you have this done, how will you know if this is causing symptoms. The biggest loses if this liberation procedure does improve MS symptoms would be the pharmaceutical companies. So we need to understand who is really driving the negativity surrounding this procedure. This article states there was no measurable positive outcomes, yet it also states that the people enrolled in the study reported physical and psychological well being as a result of the treatment, which obviously implies improvements in symptoms. It is so disappointing to see what is happening and in the meantime people continue to suffer, UNLESS you either are rich enough to have the procedure done privately in Kuwait or one of the other 40 countries that offer this! What a sham!!!!

  • Bjorn
    June 08, 2012 - 02:35

    It is sad - that polititians will nor hear the story of the over 30.000 sufferers that has had significant imrovements in their life -that the neurologist are stopping a blood drainage issue (this is not rocket-sience - just let the correct doctors treat the issue) -when polititiance obviously don't even bother to use a calculator (cost of treatment at a hospital is at a tenth of cost compared to yearly medical cost...) -when the drug companies has such a grip on medical profession like the neuros, and now politicianc...

  • Sharon
    June 07, 2012 - 22:04

    ‎"I find it sad that despite the repeated failures of the supposed "liberation treatment" for Multiple Sclerosis, some feel it necessary to push their you tube videos. These zealots for the treatment love using you tube as a method of conveying NON SCIENTIFIC, NON MEDICAL, and total ancedotal force feed lies by these completley irrational followers. Interesting they push their half witted videos knowing full well the recieve compensation for the amount of hits or persons who look at the trailer park trash they tout as truth. Dont buy into their lies. Don't fund their insane need for notary. Instead listen to the plethora of educated doctors who have a license to practice and prescrbe medications. Not those who have PhD.s in geology and medical mapping. Good day and hopefully soon goodbye to the rubbish known as the liberation treatment..

  • Azaeleaprawn
    June 07, 2012 - 21:22

    Just another study funded by Big Pharma who give money to the very governments that commisioned this study, so this outcome negative to liberation treatment was a forgone conclusion. Because, Heavens, we can't say anything in the study that will possibly negatively affect Big Pharma's multi billion dollar profits, now can we? And I ask Ms Sullivan, how does she sleep at night with this evil patronizing attitude towards people with MS?

  • Sharon
    June 07, 2012 - 18:45

    ‎"I find it sad that despite the repeated failures of the supposed "liberation treatment" for Multiple Sclerosis, some feel it necessary to push their you tube videos. These zealots for the treatment love using you tube as a method of conveying NON SCIENTIFIC, NON MEDICAL, and total ancedotal force feed lies by these completley irrational followers. Interesting they push their half witted videos knowing full well the recieve compensation for the amount of hits or persons who look at the trailer park trash they tout as truth. Dont buy into their lies. Don't fund their insane need for notary. Instead listen to the plethora of educated doctors who have a license to practice and prescrbe medications. Not those who have PhD.s in geology and medical mapping. Good day and hopefully soon goodbye to the rubbish known as the liberation treatment..

    • TKlein
      June 08, 2012 - 04:25

      Enclosures?

    • Mike
      June 08, 2012 - 07:47

      Very cold comments. I hope you are never afflicted with such a condition and searching for relief. By the by....lack of consensus on the validity of the treatment gives one pause to wait for some longer term test results before making such comments as yours. http://www.thisisms.com/forum/chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19572.html

  • Mimi
    June 07, 2012 - 18:40

    "The study was small, with 30 participants who got the procedure and 10 who did not. The researchers did not know which were which as they assessed the patients. " ( not mention in this article though !) So, my reading about this is this : better have the procedure done by someone who has treated over 1000 patients already for CCSVI than being treated by doctors with very little experience in treating it. The key in treating CCSVI is to know what you are looking for. MALFUNCTIONING VALVES ARE VERY IMPORTANT TO TREAT FOR OPTIMAL BENEFITS. We have no idea of the credentials of the doctors who treated the patients and about their experience in treating CCSVI.

  • Janet Orchard
    June 07, 2012 - 17:31

    I had the treatment in Poland 19 months ago and EVERYTHING has improved other than balance. It is ridiculous that this is not offered to all people with MS worldwide. (PPMS 17 years)

  • Crystal Bruce
    June 07, 2012 - 17:29

    Please read: https://www.facebook.com/notes/ccsvi-ivcc/doctors-with-ms-treated-for-ccsvi-les-m%C3%A9decins-avec-la-sp-trait%C3%A9s-pour-livcc/160260514038006

  • G'Lawd
    June 07, 2012 - 17:05

    One politic in the LIB party on the east coast his wife has had it done and he said he sleeps with proof she's remarkably recovering quite well, call him up and ask of her improvements lady!!

  • Mylène
    June 07, 2012 - 16:52

    No benefits ? This is what will come out if the results (data) are studied by neurologists with a mind already brainwashed by their cimented beliefs and knowledge regarding MS. How can someone make sense of cognitive dissonance? Nobody ! Neurologists cannot ! Tell that to a friend of mine who refused to tell her neurologist in Montreal that she had the procedure in Germany less than a year ago. Her neurologist told her without knowing that she had had the procedure that she wasnow like a new person and to come see him in 5 years. He said he would write about her case in his own registry. He thinks that itis MS thatis likethis.... unpredictable MS. That ladyisnow working full time again andis a very busy mother as well. Her husband cannot believe the change himself.Now , in politics, like Jean Chrétien once said " Even in front of the evidence, deny everything ! " We are served a spin that is benefiting the neurology field. How can we trust narcissist people ruling this field of expertise. How can we trust neurologists who have rooted strong beliefs that the CCSVI treatment is a hoax ? People donot care about politics. They care about their quality of life. Who can care about your well-being but yourself ? I cannot believewhat I am reading here !!! Thank you for reading. Excuse my English, I am French.

  • Denise Baillie
    June 07, 2012 - 16:15

    I want to know what the findings were regarding fatigue and heat intolerance, because those are the two symptoms that stop me from living my life and those are the symptoms that are most helped by CCSVI treatment. A study done by neurologists trying to disprove CCSVI (done in Poland,I believe) following up people post-procedure at 1, 3 and 6 months found clinically significant improvement in those symptoms continued after 6 months. The procedure works to give people back some quality of life, it has been found to be safe in 3 published studies (the latest published in January of this year by a group of doctors out of Albany. NY) Why is the Canadian government so determined to deny Canadian people the right to make their own health decisions!? We are not a bunch of morons! I have voraciously devoured every piece of scientific information I could find about CCSVI treatment since November 2009, and I am completely satisfied with the proof of safety and efficacy of the treatment in correcting this vascular condition and improving symptoms that were erroneously attributed to MS in the past. We need this treatment to be done in Canada!

  • Jen
    June 07, 2012 - 16:13

    What is wrong with this picture. Observational studies, so far, have been dismissed as irrelevant by the neurology community. I thought they were all waiting on blinded scientific trials before passing any judgement on the efficacy of this treatment. The statements made in this article have absolutely no merit. This treatment is not effective for all but a huge miracle for some. It's cheap and safe...I have progressive MS and no treatment options. Where is your great Canadian heart, Health Minister...??

  • James Mossman
    June 07, 2012 - 15:57

    Just like many of the drugs which are offerd to MS patients. No MEASURABLE benefits, but if the patients report their perceived physical or psycological benefits, then the drugs are made available. Think about mood altering drugs offered for depression. Is there a physical benefit which can be measured? NO, it is purely the patients perception. So if there is a percieved benefit to CCSVI treatment by a sigfnificant umber of patients, WHAT IS THE DIFFERENCE?

  • Susan McGregor
    June 07, 2012 - 15:56

    OMG, so how is it that my boyfriend's sister has a diagnosis of MS before CCSVI treatment and now has been told she does not have MS??? Lies, to keep us down and dying. Shameful, shameful!

  • Crystal Bruce
    June 07, 2012 - 15:55

    I had the treatment Nov 30, 2010. I have have very significant results. I feel better than I have IN MY WHOLE LIFE!! I WANT people to come and study me to see the results but yet I am being ignored because my neurologist is to "embarassed" by me because I have been all over the news. As well I am being ignored for an MRI. The neuro never even showed up for my last appointment at the MS Clinic. I have noticed ALL of my physical symptoms go away....now I am noticing cognitive functions returning and my emotions are much more stable. I am returning to the outside workforce now and am up for ANY challenge that comes before me. NO NOTICEABLE BENEFITS!!! YEAH, RIGHT!! Check out my youtube videos found under "Crystal's Liberation"....you will see results!

  • Mary
    June 07, 2012 - 14:54

    I would like to know just what they are trying to measure.... !!! My husband had this done one year ago in March and he still has decreased pain in his back, his walking and balance have greatly improved, he does not have the foot flop anymore, and he was able to jump for the first time this year in February when he saw his neuro who had o admit that was a first.. as he sat there and read all the paperwork we brought back from his treatment ... that would be the OR notes, the nurses notes, the EKG strip, all his vitals and because he needed to have a stent put in to his azygos the stent card with the number and size... we actually even gave him a copy of the entire chart. We also were given a video of the procedure to show the before and after blood flow through the 5 veins they opened... Oh and the whole placebo thing .. well 14 months later I would think that would be a long time for a placebo to have effect. I am tired of this government playing with patients lives. It feels like they are just trying no to have to pay for this. They are cutting back everywhere. Just go visit a friend in the hospital to see how many people are in the halls because there are not enough beds in the hospitals.! By the way, my husband is 64 years old ... And I am so happy for him. I am a nurse... I know the difference between subjective and objective data... We are not believing this because we are living it.

  • Angela
    June 07, 2012 - 14:50

    I wonder if her salary and retirement fund is benefitting (or showing a positive measurable change) when it comes to me finally being off CPP disability and becoming 'gainfully' full time employed (as the government calls it now) at $12 an hour since having the procedure done last year. Huh. What say you, Susan? Any benefits there?

  • David
    June 07, 2012 - 14:31

    If you werre in charge of telling people that a potential new treatment (and it's costs) for an already-bankrupt health care system was not going to be covered, how would you break the news? Would you: a) tell people it was indeed an effective treatment but it just costs too much, or b) that you determined that it was just not effective, and leave it at that. Hmmmm...which one? And remember: the audience for this news is precisely as educated and politically astute as the Newfoundland public.

  • six degrees
    June 07, 2012 - 14:30

    Regardless of MS or not, if you went to the Dr and were found to have a narrowed or blocked vein in your neck you would receive treatment, Why should having MS change that?

  • george
    June 07, 2012 - 14:13

    No measurable positive results? Did they measure fatigue? Did they measure brain fog? They must be measuring the wrong stuff is patients reported physical well-being. What does physical well-being mean? I had the CCSVI procedure with huge benefits in balance and fatigue. My bladder function is better, and that's measurable. Did they measure bladder function or distance that people are able to walk. I used to walk a couple of blocks and feel exhausted. Now I can easily do several kilometers. This started right after the procedure, so don't say that MS symptoms come and go, thereby meaning that improvements may not be a result of the CCSVI treatment. These 'ups and downs' in MS can't happen at will, unless it is by treatment.

  • steve oberski
    June 07, 2012 - 14:02

    @JEAN - taking sugar pills can make you feel better, it's called the placebo effect. And no dangerous, invasive, expensive treatment needed either. It's nice that you have a heart, now try using your brain.

  • Lori Batchelor
    June 07, 2012 - 13:55

    My neurologist had to admit that I have had "significant improvements" because I did have "measurable positive results" after this treatment. He could measure increased strength in my right leg and could see that I didn't fall over when I closed my eyes in the "balance" test. It was also obvious that I was walking better--pretty good since I'm secondary/progressive and was NEVER supposed to improve! I have never known my neurologist to "measure" my heat intolerance--he just took my word for it when I told him how rotten I felt in the heat because it is a well-known symptom of MS. After treatment, I now enjoy hottubs! Some symptoms are not easily "measurable" but when they improve, they mean a lot! You can see some of my "measurable" improvements in part of my neurological exam in my 1-year angioversary video: http://www.youtube.com/watch?v=9BNL42wcFLE&feature=youtu.be and you can see a bit of how I used to be: http://www.youtube.com/watch?v=yrH9GH0N4ck

    • Dagmar Lofts
      June 07, 2012 - 19:56

      I guess the study is as immeasurable as the diagnosis of MS. CCSVI is a real disorder and until the politicians have a loved one with the disease they will never understand. I feel for those that are naysaying angioplasty without reading ALL the info that us advocates have read.

  • MS Patient
    June 07, 2012 - 13:39

    This is a case where the government passed out $400,000 to get the results it wanted and needed in order not to have to pay for a treatment that has definitely provided positive results for some patients. The study was hardly impartial since it was conducted by staff doctors paid by the government using funds provided by the government. Little difference from the core group of neurologists who are funded by the pharmaceutical companies which will see no benefit from a CCSVI treatment. There should have been a funded REAL clinical trial which could have provided objective results, albeit at a greater cost. Perhaps ALL medical procedures should be performed only when there is a 90 to 100% chance of success, and any success rate below 50% be denied. That would also eliminate a whole bunch of other treatments.

    • michelle
      June 07, 2012 - 15:07

      Their concern is loosing the funding from the drug companies that they get paid to put their patients on. So you are completely correct. They got the answers they wanted nothing else and those of us with ms....well too bad so sad!

    • K Allen
      June 07, 2012 - 21:10

      Hi I'm a Nova Scotian that had the procedure a year ago May 20th 2011. I went to Albany NY, and Dr. Siskin did the procedure. I have had many changes and all for the better : no more head aches, Ms squeese around my mid-section is gone, no more muscle spasms and the extreme fatique is gone these are a few improvements. I agree with " MS Patient" post ,I can't believe how Doctors and neurologists can say that there is little difference in the improvments of MS patients after CCSVI. I like the rest of you know why they reach this conclusion, because they are working for the Government and that is what they are supposed to find. I know of may people and friends that have had this procedure and all of them have had varying degrees of improvement. What ever their degree of improvement , they are pleased with the results. One lady I know was in a wheel chair for 20 years and within months of having this done she was up and able to go on her own using a walker then a cane. This lady did not use a wheel chair for all that time because she didn't want to walk. Once she was home from having CCSVI done she went to the pool and physio ever other day working to regain her strength and balance this was something she wasn't able to do before. As with any procdure not everyone will experience the same out come. With anything in life there are risk ,even getting out of bed in the morning, but we still do it. MS can affects every thing that we do : breathing, seeing, speaking, balance and unbelievable pain, the list goes on. A person doesn't experience just one of these, but many so when the "experts" say that there is little or no improvement after CCSVI, having an improvement or relief in any of these if you suffer with them is a big improvement for you. It is really great that the "experts" are able to say that it is all in our heads and we really don't know what we are experiencing as improvements. I apology for the grammar mistakes.

  • norma coish
    June 07, 2012 - 13:19

    "No benefit", now that is just a ridiculous announcement to make. I have to wonder who was even studied. I have read many newspaper articles on MS patients having been treated for CCSVI with many positive results. What does "physical well-being" even mean for you, sounds like something positive to me as a person with MS.

  • KENK
    June 07, 2012 - 12:55

    To Jean. You are a very honest, intelligent person with a heart. Would you please consider becoming a politician . We need more MHA's with your fabulous qualities.

  • Paul
    June 07, 2012 - 12:51

    My uncle travelled to Bulgaria for this treatment and he is 100% better! There are definately benefits from getting this treatment!

  • james
    June 07, 2012 - 12:49

    My dear friends quality of life was was severely compromised by MS. She was tube fed. She was in a wheelchair. Despite her challenges she still retained her sense of good humor, compassion, friendship. She loved life regardless of what life brought her. She opted and could afford to have this therapy in the states. She died of a stroke three days after the proceedure. See folks it was her decision - on a chance it would improve her physical well being. I often wonder - if she knew the outcome before hand would she have opted out? Dunno. I think she owed it to herself to try.

  • J
    June 07, 2012 - 12:37

    I guess no one in government suffers from MS, most of all Sullivan. The people who get the treatment have indicated its benefit. Welcome to socialized healthcare compliments of the communist Tommy Douglas.

  • Alexandra
    June 07, 2012 - 12:32

    Really!!!!!! Who is she to say There is no measurable objective. In other words, The patients the study was made on have no say so, and the money talks saying their is no evidence. Im ashamed to be a human like her, but proud I follow Our Lord. Jean, you are soooooo right. You hit the nail on the head..... And yes I do have MS.

  • Alexandra
    June 07, 2012 - 12:29

    Really!!!!!! Who is she to say There is no measurable objective. In other words, The patients the study was made on have no say so, and the money talks saying their is no evidence. Im ashamed to be a human like her, but proud I follow Our Lord. Jean, you are soooooo right. You hit the nail on the head..... And yes I do have MS.

  • Barbara aaaahumby
    June 07, 2012 - 12:24

    Excuse me...how did Ms. Sullivan come up with an analysis of the CCSVI procedures done on patients in this province. There would have to be more than an observational study to come up with such a report. What did she mean by measurable results...was it if the patient could walk, run ,jump etc. I have a friend who had the procedure done and prior to the procedure she was bedridden. now just being able to get up and dress herself is a great thing to her. Ms. Sullivan then says there were people enrolled in the study who reported "physical and psychological well-being" as a result of the treatment.Do she understand how importanrt that is to a MS person? If you lived with MS you would. I think the CCSVI was about improving the quality of life for the MS patients anything ele they get from the CCSVI procedure is a bonus!! To do an observational study is not a good idea...because what you observe in a MS patientd can be a long way from whar is actually going on in their body..Do she know that suicide the rates in MS people is very high. Just to feel better is a good thing..

  • Kelli
    June 07, 2012 - 11:53

    I agree with jean.

  • Jean
    June 07, 2012 - 11:23

    Well now, isn't that an oxymoron!! "No measuabel, objective benefit". BUT, "physical and psychological welll-being." Why don't you just come out and say We don't care, we're not paying for this treatment with your money!!! Don't know how you people sleep at night....There by the Grace of God go I... Another oxymoron....honest politician!!! And no, I , no aniy memeber of my family have MS...I just have a heart.l

    • madonna
      June 07, 2012 - 15:41

      how dare the government to say something like that i am a ms patient who had the treatment the fact that i can sit and type this e mail,walk,shower alone, and even kick your ass speaks for itself. i was liberated in nov 2010 i know things will never go back to the way it was unless a cure is found but this is a good holding unit until that time comes