CCSVI Neutral or Critical Perspectives

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby MrSuccess » Mon Aug 09, 2010 12:05 am

just a reminder -

Our Dr. Zamboni was asked about CCSVI having a placebo effect .

He smiled ... paused .... then said : " Placebo ? ..Not after three years....... "

Dr. Zamboni was refering to some of his original CCSVI treated patients.

Mr. Success would suggest that would be one hell of a placebo effect .. :!:

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Postby costumenastional » Mon Aug 09, 2010 4:41 am

I do not believe in placebo effect. This is just me of course but i happen to know how i feel every second. I know how i feel when i wake up, i know how i feel during the day, hell, i even know how i feel when i sleep sometimes.
There is not a single doubt in my mind that CCSVI is connected with at least some symptoms that until recently were attributed to MS.
There is not a single doubt in my mind that i am better post op either.
As i know that i am not cured and some things are far from normal in the way i function, i also know that slowly but steady, improvements are happening. I would be an idiot if i didn't admit that. Not to mention ungrateful before the eyes of God.
The fact that i am afraid to shout it from the rooftops has to be attributed to other factors. Being only 35 i feel it's too early for me to be certain that a have a future with MS.
I dont know the future. All i know is that if i hadn't done this, i would probably suffer from severe brain issues and significant paralysis in my arms. I was a mess before Petrov ballooned all over the place inside my veins. I was a mess after that also for a few weeks.The fact that i am not any more is not a placebo effect. It is the simple truth. The "liberation" procedure gave me real hope by providing real benefits to me. Not that i ll be the super man i was a couple of years ago. But there is a good chance i wont suffer too much. Surely this makes things easier to go with wouldn't you say? All in all, this procedure may have saved my sorry ass.
I dont have a clue how exactly blood drainage had a so dramatic effect in the progression of those symptoms of mine and frankly i dont care. As i have stated a billion times, after strong chemo all that happened was deterioration. No f.....g placebo there. I wonder why...

Please, check out your veins and if they are to be found problematic, fix them. See for yourself if what many "liberated" patients experience is placebo or not. Avoid stents and there shouln't be not even a single serious problem. Not more serious than by taking whatever drugs they push to you without having the slightest idea what's going on. From my personasl experience i have to believe that the sooner you open those damn veins the better.

There are numerous articles, testimonies, posts.. you name it, based on assumptions, fake concern and shit like that. Some of you would not believe what crap i ve read in blogs and chat rooms all over. Many of them are not even MS related but still CCSVI is just another joke among others. So what? Are you wiling to let your lives in their hands?

Of course, there are no miracles either. Those you tube pre and post op vids can have a devastating effect. I remember watching one of those just one day before i was operated. Even now, 4 months out i wonder how i managed not to blow my brains up when right after the angioplasty nothing changed.

Just have in mind the basics: it is the treatment with the less risk involved and the most logic explanation in decades. Multiple sclerosis is one of the most expensive diseases worldwide for reasons we all know about. I dont care if neurologists all around the globe are concerned about my well being. Unfortunately i know only that they CAN NOT help me. And this is how far it goes with them.

Placebo effect may be real but even if this the case it can't be put under specific rules. It s an entirely different thing for anyone who may or may not experience it and when time is brains it should not be taken under serious consideration in aspects of making a decision. For me placebo effect just doesn't apply. I know my shit.

I am planning to keep the blood flowing and when docs get their methods perfected i will do it again in a blink of an eye, because i do believe that this is the only way i may keep this monster down.

Zamboni is not an idiot. Zamboni is a genius. And he is here to stay.
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Postby CCSVIhusband » Mon Aug 09, 2010 5:42 am

Costume, I've been away from the site for a while (my wife's symptoms, like yours I see, went away at the beginning, and continue to stay away).

The last I had read from you, you were questioning your results, I'm glad to see you're now noticing small benefits everyday that are holding. Good on you friend.

I love the Zamboni quote about placebo after 3 years ...

I'll be the first to admit, nobody is "cured" of MS after liberation ... because you still have the MS ... BUT, you've also likely stopped (or significantly slowed) the mechanical function of what was causing S's by opening up the veins.

We're still in the VERY early days of learning about this, and how to treat it ... but some day this is going to be as standard as knee surgery for a torn ACL ... and then the other 400,000 MSers in the US will all try to get this done at once, and have to wait years and years. I'd be willing to be a guinea pig for now ... the risks continue to be VERY low as more and more people get this done every day, the negative results percentage continues to shrink and shrink ...

I guess if you're waiting for doctors to really learn a lot more, then I could see waiting. But it seems safe, and the majority of people see results ... I'm not sure the foot dragging still ... makes no sense to me.
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Postby sbr487 » Mon Aug 09, 2010 5:45 am

Placebo is itself not without its share of controversy. And can be used to create bias to/against:

At present, this is neuro community's favorite word ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby BooBear » Mon Aug 09, 2010 5:47 am

Here here!
Three veins angioplastied.  One renewed life.  
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Postby TMrox » Mon Aug 09, 2010 10:24 am

Info on placebo effects:

A placebo effect is the measurable, observable, or felt improvement in health or behavior not attributable to a medication or invasive treatment that has been administered.

The idea of the placebo in modern times originated with H. K. Beecher. He evaluated 15 clinical trials concerned with different diseases and found that 35% of 1,082 patients were satisfactorily relieved by a placebo alone ("The Powerful Placebo," 1955). Other studies have since calculated the placebo effect as being even greater than Beecher claimed. For example, studies have shown that placebos are effective in 50 or 60 percent of subjects with certain conditions, e.g., "pain, depression, some heart ailments, gastric ulcers and other stomach complaints."

****Although the evidence on the existence of placebo effects might appear compelling, there are also medical articles questioning the statistical methods of those who argue have found placebo effects in small studies.
This is one example:

"Is the Placebo Powerless? An Analysis of Clinical Trials Comparing Placebo with No Treatment" by Danish researchers Asbjørn Hróbjartsson and Peter C. Götzsche

This article "found little evidence in general that placebos had powerful clinical effects." This meta-analysis of 114 studies found that "compared with no treatment, placebo had no significant effect on binary outcomes, regardless of whether these outcomes were subjective or objective. For the trials with continuous outcomes, placebo had a beneficial effect, but the effect decreased with increasing sample size, indicating a possible bias related to the effects of small trials." (Most of the studies evaluated by Hróbjartsson and Götzsche were small: for 82 of the studies the median size was 27 and for the other 32 studies the median was 51.)

"The high levels of placebo effect which have been repeatedly reported in many articles, in our mind are the result of flawed research methodology," said Dr. Hróbjartsson, professor of medical philosophy and research methodology at the University of Copenhagen.*

Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby Lyon » Mon Aug 09, 2010 1:16 pm

Last edited by Lyon on Sun Nov 20, 2011 7:02 pm, edited 1 time in total.
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Postby jimmylegs » Mon Aug 09, 2010 1:22 pm

sure thing lyon, you can also refer to this sticky on your own in future, please and thank you
Off-topic subjects are encouraged! This is a site for the MS community, which is comprised of vibrant people, who don't necessarily just want to confine themselves to discussing narrow topics. Again, please keep things in good taste and you won't have a problem.
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Postby jimmylegs » Mon Aug 09, 2010 1:24 pm

lyon to pacify you i will split starting with the post i responded to initially.
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Postby 1eye » Mon Aug 09, 2010 5:55 pm

I am not really posting here. What you see is mainly due to the placebo effect. Placebo works. I guarantee it, because I have been on it half my life, and never had a single one of them bite me. Not one! Unless you count those marks on my legs, where my feet used to be. They are completely negligible. Placebo made sure of that, no worries. They never come near me, when I take my medication... I think it's the smell. They can smell placebo, and they won't come near it.

But I'm really not posting....
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience

I am not a doctor. Do not take anything I say as medical advice.
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Postby BadCopy » Tue Aug 10, 2010 7:26 am

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Postby Cece » Tue Aug 10, 2010 11:03 am

BadCopy wrote:THAT ^ IS FUNNY

agreed :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby BooBear » Tue Aug 10, 2010 12:40 pm

You know what's interesting?

I was hungry earlier. So I had a bite to eat.

My hunger, surprisingly, abated.

Perhaps my lack of hunger is a placebo effect. Or, perhaps it is a coincidence.

Or, maybe the lack of hunger can be attributed to the fact that I had a f$%#ing lunch.
Three veins angioplastied.  One renewed life.  
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Postby codefellow » Wed Aug 11, 2010 12:58 pm

BooBear wrote:You know what's interesting?

I was hungry earlier. So I had a bite to eat.

My hunger, surprisingly, abated.

Perhaps my lack of hunger is a placebo effect. Or, perhaps it is a coincidence.

Or, maybe the lack of hunger can be attributed to the fact that I had a f$%#ing lunch.


...maybe you THINK you aren't hungry any more because you THOUGHT you had lunch. But you were actually eating PLACEBO! :wink:
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CCSVI Neutral or Critical Perspectives

Postby jimmylegs » Mon Jun 27, 2011 1:29 pm

If you are on the fence or doubtful regarding CCSVI, feel free to express your thoughts here.

Please post here ONLY if you have a neutral or negative perspective on CCSVI.

This is a venue for civil discussion on any perceived negative aspects of CCSVI developments.

Abuse between extremes of positive and negative opinion will be deleted on this thread.
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