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MS sufferers lobby Alberta government for “CCSVI” treatment by “liberation”

Posted by Colin Rose on November 17, 2010

As I foresaw almost a year ago, this was inevitable. A desperate patient has spend $many thousands to have the “liberation” cure by Dr. Simka in Poland suffers a relapse of his disease, is convinced he has a retenosis of his jugular vein in spite of having a stent insertion and demands that the Canadian taxpayer fund the same bogus treatment. Restenosis is the new relapse.

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Metro – MS sufferers lobby province for treatment.

 

CANDICE WARD/FOR METRO

Sindy Layh gives husband Gordon a kiss near his left jugular vein, where a stent was placed as part of a treatment he received in Poland in June. Gordon is among many MS sufferers fighting to have that treatment approved in Canada.Sindy Layh thought she had her husband back, but she is now slowly watching him slip away.In June, Sindy and Gordon Layh of Bonnyville travelled to Poland to try an experimental treatment not available in Canada for his multiple sclerosis. Now his symptoms are coming back.“I had my husband back. Now I spend all my time worrying,” said Sindy.

Gordon said the CCSVI (chronic cerebrospinal venous insufficiency) treatment he received was “almost a miracle” but now needs followup treatment here in Alberta.

“Because I am not dying, the treatment is very passive,” said Gordon.

The couple joined about 50 people on the steps of the Alberta legislature yesterday to demand the government bring this treatment to Canada so MS sufferers don’t have to seek relief abroad.

Alberta’s health minister says patients who need treatment following controversial out-of-country surgery for multiple sclerosis will get help.

“This is one of those problems you have when you have something that is classified by the medical community as experimental in nature,” Gene Zwozdesky told reporters yesterday.“But the fact is that somebody goes out (for the surgery) and has a complication that develops, then we in the province have no choice but to help them best we can to alleviate their difficulties.”

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Gordon didn’t have a complication of “liberation”, nor has he had a restenosis of a jugular vein. He is experiencing a relapse of his disease as happens in many cases of MS. His improvement in symptoms after “liberation” was either faith healing or, less likely, a coincidental spontaneous remission. He spent more than $10,000 to have Dr. Simka in Katowice preform a bogus procedure and cannot believe that it was worthless so he wants the same thing done again in Canada.
“CCSVI” exists only as a ruse to separate desperate patients from their money. No taxpayer dollars should be wasted on this charlatanry.

10 Responses to “MS sufferers lobby Alberta government for “CCSVI” treatment by “liberation””

  1. chrishadms said

    Do you not have anything better to do than to bash these people. I happen to know, KNOW, close to 20 people who are NO LONGER PROGRESSING and they see MY NEUROLOGIST. MY NEUROLOGIST is ecstatic to see the results, of even his most progressive patients. MY NEUROLOGIST is pissed off he cannot get US gov’t funds to pursue testing on this because “If my patients are stopping or even reversing progression this needs to be looked at. Some of my people are more than a year out and they are still holding, except for one, who restenosed.”

    Do you not have anything better to do with your time? Has it ever occurred to you these people have ran the gamete of hope and this is their last hope?

    Seriously, I know you won’t answer these questions because all you are is an antagonist and do nothing to help. Again, I hope when you go, it is 1/10 as uncertain and scary as MS. I hope you are sitting in a bed somewhere staring at a ceiling scared out of your mind. Then you will at least have the chance to say your sorry to God for the way you treated people before you die. Even if you have done nothing for anyone, every one should have the chance to rectify things with God. Even you.

    • Colin Rose said

      Only 20? I could find thousands of MS patients with no disease progression in a year and who never had “liberation.” If symptoms recur in true believers, like the man in the story, the relapse, they are convinced, must be caused by “restenosis” not natural disease progression. That is why blinded controlled trials of “liberation” have to be done before any more money is spent on it. But first Zamboni is going to have to tell the world how he diagnoses “CCSVI” without knowing before the imaging that the patient has MS.

      Neurologists are on the horns of a dilemma. If they say what they really think of “CCSVI” they will lose some patients who are absolutely convinced their symptoms have been relieved by “liberation”. So they have to say nice things about “CCSVI” and “liberation” to keep them happy.

      If anyone should be saying he is “sorry to God” it should be Zamboni. He has caused thousands of desperate patients and their families to waste their life savings on a useless and dangerous hoax.

      • chrishadms said

        Zamboni will be looked at as a hero among us MS people. I have not had the liberation procedure. I am in a wheelchair. I should be running to get it. I’m not. There are others to do it because I have done other things to further MS testing. Even if the Liberation procedure is a falsehood or not…he is trying and he is doing something positive. People may die, but we are all dying anyhow, so at least we, and he are trying.

        My doctor, one of the ones at the head of the MS field in the USA, I mean he is known by everyone, refuses to say it is not a possible cause of MS in some people. He says in 30 years of working on MS he can come with a 100 reasons why it can’t be CCSVI and 100 reasons why it could be. He is in charge of 50 other clinical trials and does not want to do this at our hospital.

        You on the other hand come right out and say NO. You come right out and dash any hope anyone might have.

        I look at it this way, are you doing something proactive or sitting on the sidelines complaining about everything being done on the stage like the Judges in the Muppet Show? I look at websires that report the positives, and solutions,then I look at yours. It’s great knowing you will be judged the same way you judge. I just feel sorry for you.

      • We can’t all have simultaneous remissions, Dr. Rose. It’s not only improbably, it’s simply impossible.

        Restoration of previously unavailable neurological function upon the treatment is rather hard to attribute to placebo, though of course one can try.

  2. adaskothebeast said


    “CCSVI” exists only as a ruse to separate desperate patients from their money. No taxpayer dollars should be wasted on this charlatanry.

    as i understand angioplasty is charlatanry and hoax in your opinion.

    better to buy dangerous drugs which will not treat at all but also finish your liver just to buy even more drugs

    you must try harder ;)

  3. moreconcerned said

    I don’t think Colin Rose is a friend of the drug companies.

    Some interesting CCSVI info here:
    http://www.medscape.com/viewarticle/732683

    • adaskothebeast said

      “Consensus Document of the International Union of Phlebology on Diagnosis and Treatment of Venous Malformations recommends that, for veins draining the brain and spinal cord, patients receive diagnostic testing, including duplex scanning and MRV, and treatment with angioplasty and stenting for proven obstructive lesions (Int Angiol. 2009;28:434-451).”

      I still do not understand why in context of venous malformations procedure of diagnostic and eventual angioplasty it is ok but in context of MS people who have also venous malformations it is called “dangerous”, “hoax” etc.

      At least more scientist will finally try to find the root cause which is good. Proposition of stopping CCSVI treatment is of course good for pharma corps which already started to empty their warehouses.

      Telling about ethics –
      I do not think dangerous drug dealing is more ethic ;)

  4. moreconcerned said

    My I add, the procedure is totally safe.

    http://www.cbc.ca/health/story/2010/11/18/multiple-sclerosis-vein-death-costa-rica-mostic.html?ref=rss

  5. There is no doubt that the indirect cause of this death was the treatment (as the article states, the thought is that the blood thinners he received on his second trip to Costa Rica are likely to blame).

    I would like to highlight some interesting aspects of this case, though, that are getting overlooked.

    a. The initial response post-procedure was a positive one. The patient had more energy, etc.
    b. His MS symptoms became worse and he was found to have a significant blockage due to the stent used. Would that not indicate that proper blood flow can alleviate (or worsen, in the case of a lack of proper blood flow) MS symptoms, or perhaps progression?
    c. Let’s focus on the stents. Those of us in the “pro-CCSVI” camp are even split on our opinions of stents. I, for one, do not favor the use of stents due to the risks and the fact that the stents are designed for arterial use, not veins. Could this man have been spared if he stuck with the angio-only approach? Unfortunately, we will never know.

    This is why collaboration- not defamation- is needed. Just as MS is a complex disease with many questions and few answers, so the variables with CCSVI and the treatment. We know of one death (this one) and one significant negative event (open heart surgery due to a stent migration) tied directly to the use of stents; one other death due to a reaction to the medications taken post-procedure. To my knowledge- and I welcome sources that can enlighten me if I am misinformed- no one has died as a direct result of the angio used to open the veins.

    Finally, I will point out that when stenosis of the IJVs occurs in dialysis patients due to catheter trauma (as the IJV’s are used), the proper protocol is to perform an angioplasty to correct the stenosis. If the procedure itself is so unsafe, gentle readers, then let’s get on the phone now and tell those doctors to stop their attempts to kill dialysis patients right now!

    • beveikrimtas said

      [re-post this ’cause somehow put it in different place :)]

      Maybe you are unaware that mortality rate for dialysis care in US is 1:5.

      This is a high rate, but life threatening condition requires life saving solutions at any cost. When patients on long-term hemodialysis literally ‘run out’ of access, so this can be a fatal problem, without dialysis patients die in a few days.

      Seeking ensure the procedure IRs use CVC (Central Venous Catheter) which is inserted into a large vein usually the vena cava, via the internal jugular vein or the femoral vein.

      The infection is a common issue, but venous stenosis is more serious problem with catheter access. Remember, the catheter is a foreign body (made of steel) in the vein and provokes an inflammatory reaction in the vein wall. This results in scarring and narrowing of the vein (via intimal hyperplasia), often to the point of total occlusion.

      An access though femoral veins usually is the first option, when they became obliterated (closed as a result of damage during catheterization) docs go for jugulars. The same story, usually the one got obliterated (CCSVI!!!), and it is not recommended to “close” both of them. Then the grafts (or arterio-venous fistulas – AV fistulas) come into play providing up to few years of access.

      So far no problems with brain’s white matter or MS onset in long-term dialyzed patents with catheterization induced “CCSVI” (damaged jugulars both sides, one usually obliterated) were reported.

      IRs consider it is safe to ligate one of jugulars and they do that in hundreds for treatment of tinnitus, tumors, traumas, etc. every single year for decades. So far no brain problems were reported.

      BTW, I’ve heard that one of IRs who became big in CCSVI movement did that to his wife to stop the ‘ringing in the ear’ saying ‘it is enough to have only one jug’, but now he is chasing subtle “refluxes” or “stenoses” in jugs, isn’t this amazing?.

      Stay well,

      BR

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