CCSVI – Cure or Quackery?

University of Buffalo 

So – how do you explain the really great results some people have had with this treatment?  It certainly rings true with me that if blood flow is compromised and then it is released, a person would experience benefit.  And let’s not forget the “placebo effect.”  That is not to say that there is no physiological benefit and this is all a figment of people’s imagination.  Not at all.  I’ve always said, “if you believe it is, it is.”  There is documentation of actual physiological improvement upon a shift in attitude and upon a shift in your body.  Anthony Robbins, self-help author and motivational speaker, talks a lot about this concept.  He suggests at your most angry or desperate moments to stop and smile.  Weird right?  And HARD.  But – nonetheless – it works.  When I’m able to do it – and that doesn’t always happen – it has worked like a charm.  There are physiological changes that occur – hormones are released when muscles that control a smile are fired upon – that release the “feel good hormones” like seratonin, endorphins, and dopamine.  For more on that concept, I suggest you check out Tony Robbins book “Unleash the Power Within”.  Click on the image below to learn more.

 

Have you had any experience with CCSVI?  Are you considering it?  How about the placebo effect – ever have an experience with that concept?  In helping others, we help ourselves.  Please share your thoughts and experiences in the comment section below.  Thanks.

It helps the stress – just to say F-U-M-S

Special thanks to www.FreeDigitalPhotos.net for the use of the really cool surgery picture!

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11 Responses to “CCSVI – Cure or Quackery?”

  1. Carla Says:

    I remember when CCSVI as all the rave back in 2010/2011 but I haven’t heard much since then. As much as I want to jump on every new “cure” I decided to wait a while to see what happens with the research.

    Reply

  2. JJ Says:

    My new bride was diagnosed RRMS in late 1996, shortly before we got married. She had tried Betaserone for a year until she developed antibodies to interferon, then she switched to Tysabri. When CCSVI theory became common treatment, we weighed the pros and cons and decided to give it a try. She had her CCSVI procedure performed October 2010 in Albany, NY. The results were astounding ! Most of her symptoms completely disappeared within days of the procedure. She lost the fatigue, the tingling & numbness, the spasticity, the MS hug, the urinary incontinense – and her energy level and lust for life was restored. We were elated. About 15 months after the CCSVI preocedure, a few of her symptoms began to return (but to a much milder degree)and we then considered having the procedure done again. However, subsequent doplar imaging revealed no return of jugular stenosis. We don’t believe that CCSVI treatment is a cure, but it is certainly part of the puzzle. Almost three years after the procedure, her quality of life is still greatly improved. We’re believers.

    Reply

    • admin Says:

      JJ – Thanks so much for sharing your experience with CCSVI. I’m so glad to hear that your wife had such great success. The success stories are amazing. I’m interested to learn more about this procedure and it’s outcomes.

      Reply

  3. Mark Says:

    Most of us involved with this since it’s inception call it anything BUT a cure, those superlatives have
    little place in the discussion, it is only the newly initiated (since 2010-11), along with
    the inevitable detractors, that use that particular word.

    Watch out for the high dollar quacks in the US, ignore the flashy websites full
    of testimonials. They are there to separate you from your money, most have an unacceptable
    failure rate. You’ll NEVER see the failures and they are too numerous to count.

    Reply

    • admin Says:

      Hey Mark — Thanks for taking time to share your comments with the community. I used the term “cure” a bit tongue-in-cheek as at one end of the spectrum, that seems to be the claim. It’s certainly an interesting concept and there are many people who have enjoyed great success. The question remains – would this procedure have “helped” those people regardless of their MS?

      Reply

      • Steve Morgan Says:

        Cure isn’t the claim made by anyone qualified to make the claim. Zambonie has a hypothesis. Others are testing their ideas too, like the vagus nerve and autodystnomia.

        Reply

  4. Lori Batchelor Says:

    I am one of the success stories! In case you don’t know, there are different types of MS–relapsing/remitting, secondary/progressive, primary progressive–the “progressive” types are not subject to “remissions”–sure, you may have some days worse/better than others, but no significant changes, just steady deterioration.

    Following my diagnosis in 1990, I thought I’d be one of the lucky ones who never developed severe symptoms–I’d only had strange numbness and tingling sensations that prompted the diagnosis. That all changed in 1992. I had 3 SEVERE attacks that left many disabling symptoms. I could no longer work. Although I could still get around in my home while holding onto walls, I required an electric mobility aid (scooter) to travel distance beyond about 20 feet outside of my home. By 1997, I had to move to a one-level apartment because I could not manage stairs.

    Although I was originally relapsing/remitting, by 1994, I had become classified as secondary/progressive. This meant I was just supposed to accept that I would NEVER improve, just progressively deteriorate—they just didn’t know at what rate of speed. The “secondary/progressive” label also meant that even when so-called disease modifying drugs came on the market, I was not eligible for them because they were only for relapsing/remitting cases. NO TREATMENT WHATSOEVER AVAILABLE FOR ME!

    I have made many videos for youtube that can be found on lorimayb’s channel. My 1-year Angioversary includes part of a neurological examination after which the neurologist, who has been treating me for 23 years, had to admit I am “significantly better”–not bad for someone who was supposed to just degenerate until they die! http://www.youtube.com/watch?v=9BNL42wcFLE&feature=youtu.be

    My latest video was made more than 2 years after treatment: You be the judge, take 2–no music!
    http://www.youtube.com/watch?v=fbJ3qPXioVc&feature=youtu.be

    Reply

  5. Lori Batchelor Says:

    Here is more info about the quoted Buffalo study, if you’re really interested in learning about the misleading info put out in the press release.

    https://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/ashton-embry-direct-ms-premise-trial-data-different-than-publicity

    Reply

  6. Carol Prest Says:

    If you are going to base you final decision relating to CCSVI testing and treatment on the Youtube edited video then you are not educating yourself with the actual facts or results of this Buffalo Study.

    What the EDITED Video did not tell you was the procedures performed on 9 patients were NOT successful. Bloodflow was not restored. IF bloodflow had been restored then the procedure would be valid and results could be monitored to see if improvements could be measured.

    Maybe the doctors that performed the procedure need some more experience so when they do the venoplasty they can at least say proper bloodflow was restored. This was nothing more than another intentional roadblock to validate the MS Neurological community to further dispel CCSVI and cause confusion in time for their annual conference. It would be so nice to have a level playing field and transparency reported so people with MS can get the truth. The uneducated need to stop interpreting actual data based on a headline or edited youtube video.

    Clinical studies need to be done according to the protocol set out by Zamboni’s original pilot study if they want to challenge his results. Then hopefully we can all move forward and stop the political and self serving agendas at the expense of people suffering from this horrible disease.

    Reply

  7. JJ Says:

    Hey Mark % Carol:

    The Interventional Radiologist who performed my wife’s CCSVI procedure was very candid with us in the telephone interviews prior to the procedure – as well as the day of the treatment. She admitted to us that 33% of those treated at Albany Medical Center saw dramatic improvements – 33% saw moderate improvement – and 33% saw no improvement in their MS symptoms. We would never trust the foreign “cash for cure” clinics that promote medical tourism for CCSVI treatment, but this IR practice in Albany was very thorough, patient and reassuring. We felt that a 66% chance of improvement was worth the trip. The procedure cost us nothing other than transportation and (discounted) lodging and our meals (and champagne). Our medical insurance covered everything for treating “venous stricture venoplasty”.

    My new bride saw such dramatic improvement the day after the procedure that we spent the next three days vacationing at Niagra Falls where she walked the equivalent of 14 city blocks to the Falls & back. On the second day, we walked back to Falls and took a boat ride on the “Maid of the Mist” and later that evening she walked the equivalent of 4 blocks each way (in high heels, no less) to gamble at a casino. This was a woman who, 2 days earlier, couldn’t walk 100 feet without stopping to rest. I was amazed!

    I’m not trying to be a cheerleader for CCSVI treatment – but I AM a believer – it worked for us. As for the naysayers, I’ve found in the research that few IRs have been invited to participate in those studies – AND the neurologists who have conducted most of the studies have a vested interest in the status quo AND HAVE DEEP ROOTS WITH BIG PHARMA$$$$.

    Reply

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