ccsvi how it could be wrong

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

ccsvi how it could be wrong

Postby Billmeik » Fri Jan 15, 2010 9:36 am

it sounds like there might be some results on ccsvi coming in Feb. And the big one in march...


while a productive thing to do while waiting is to read Putnam's amazing dog studies from 1936 another thing is to get ready for bad news. How could this fall apart?


1. MS patients can be guilty of wishful thinking about ALL new cures...


2. the 'chicken or egg' problem, could reverse and the ccsvi could be an outcome of a neurological problem,There are precedents in the veins of the legs, where a stenosis or occlusion can be caused by a problem 'upstream'...

3. While occam's razor always points to the simplest solution, if the problem WAS proven to be neurological, the more complex solution would win.

4. like most flakey new MS theories the MRI data on disease progression after liberation is soft. Is this for a reason? I hope not.

5. While I am convinced the imaging is just very difficult, it may be that the reason ccsvi isn't seen by some is that it's a judgement call and 'faith healing' just doesn't cut it with everyone.

The list goes on and on. Having had MS for a decade now. I have seen a lot of cures come and go. This one seems stronger than most. Even if one of the liberated has an attack, because a bunch of zamboni's theoretical assumptions prove incorrect, I believe the disease is modified if not cured.
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Postby sbr487 » Fri Jan 15, 2010 10:00 am

Sorry to say but that is a pessimistic way to look at it ...
For most of the people who have MS, I think discussion about root cause of MS etc. is just an academic discussion ...
In the worst scenario, I think we would like to see liberation treatment as one of the choices of treatment. The rest if then left to individuals who will choose the method that brings max relief ...
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Re: ccsvi how it could be wrong

Postby Boreas » Fri Jan 15, 2010 10:18 am

Billmeik wrote:it sounds like there might be some results on ccsvi coming in Feb. And the big one in march...


I thought it was early Feb. that Dr. Zivadinov's preliminary results were going to be published. What's the "big one" in march?

Thanks

Boreas
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Pessimist!!!

Postby Badger » Fri Jan 15, 2010 10:23 am

8)
Just as well I am an optimist and at the end of the day I will be smiling. :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D Try it. Its great!!!!!!!!!!!!!!!!!!!!!
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ccsvi how it could be wrong

Postby petebou » Fri Jan 15, 2010 10:28 am

May be my interrogation was answered somewhere on this forum but here it is. Do we have reports on how the "first Italian liberated people" by Dr Z are doing today, after 3 years or so, I understand. Are there any personal logs written by those pioneers that we could read ? Is there an Italian "CCSVI tracking project topic" anywhere ? It would be very interesting to me to read personal experiences.

Pierre
________________________________________
RRMS diagnosed '92; both IJVs ballooned and stent in azygos March 31st in Katowice, Poland.
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Postby nives » Fri Jan 15, 2010 11:02 am

The wife of dr. the Zamboni has been " liberata" 3 years ago and she is well.
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Postby Boreas » Fri Jan 15, 2010 12:03 pm

GiCI, who is a regular contributor to this forum was one of Prof. Zamboni's patients. Use the "search" function to read about his experiences (pretty positive ones, I'd say).
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Postby cah » Fri Jan 15, 2010 12:06 pm

There's the sticky "SCHEDAS CCSVI" in this forum with one entry. And there are the interviews of some italian patients in the CTV-documentary.

I don't think that it is very productive to get ready for bad news. That's because I'm quite convinced that the results will be positive. What convinces me most is Dr. Zivadinov on the CTV videos. He's saying (by the time the video was made) that he already thinks that it is true that vein stenosis is more prevalent to PwMS than to normals. He would be a complete fool in terms of professionalism if he had said that just by intuition. So he must already have had some sort of proof. I think he did.

So, I think what would be much more productive is to consider what to do and how to react afterwards. To which doctors do I send the results? What can be done to spread the Info quickly, firmly and copious?

Cheers

Cah
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Postby Cece » Fri Jan 15, 2010 12:21 pm

To echo Boreas's question, there is a big one coming in March? From Zamboni?

I was skeptical when I first looked into CCSVI (I'm skeptical of LDN, let alone bee stings, although now when you apply CCSVI theory I see where the bee stingers were on to the vasodilation effects). One of the big things that differs CCSVI from so many of the MS dashed-hope cures is that this arose out of well-designed scientific hypotheses and studies that have built on each other. Zamboni has been at this for twenty years, starting with that study on children with vascular stenoses who, 20 years later, grew up 90% of them to have MS. His diagnosis studies (not the treatment studies) were double-blinded. Now those diagnosis studies have been replicated at the Buffalo lab in the small-scale study. Replication is key in science. The results of the larger scale study coming out in February are said to be promising...well, it's all starting to roll.

So what we seem to know for certain at this point is that the majority of MS people have venous abnormalities of the neck and torso/spinal area (azygous) and that non MSers do not. That this points to a simple cause and cure has not been replicated yet, but it is the take-away of Zamboni's treatment research of the last two years...and, really, if veins like this have an effect elsewhere in the body, it is not logical to think they would not have an effect in the cerebrospinal area as well. That that effect is MS has not been proven yet either...but since the venous abnormalities are occuring only in MSers, again it's the logical conclusion.

I've looked for ways for this to be wrong, because of the whole too-good-to-be-true thing. Once the replication at Buffalo turned up, even in the small-scale, it starts to be that there would have be gross incompetence or fraud for it not to be the case that there are venous abnormalities in the majority of MSers. And from there, the rest follows.

Sorry for the long post. I am still in some shock/denial that CCSVI is real and so I go through the evidence on a fairly regular basis. It keeps coming back to a big fat yes.
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Postby Billmeik » Fri Jan 15, 2010 1:04 pm

really it keeps coming back to a yes for me too.. but I don't want it be naivete or ignorance that drives my thinking. The big one I'm talking about is the full Buffalo study comes out in march (or april) with 1000 plus people... ant wait to hear.
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Postby kc » Fri Jan 15, 2010 1:09 pm

Oh I am knowing that ccsvi is a big fat yes.
I have dealth with this monster all my life (40YRS) and have done many many protocols. Every single little weird crazy symptom all points to CCSVI.
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Postby ozarkcanoer » Fri Jan 15, 2010 1:12 pm

The Buffalo study first 500 results comes out in February. There is no way that they can be reporting on 100 participants by March !!!

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Postby Billmeik » Fri Jan 15, 2010 2:21 pm

there is already a little paper I saw where something like 35 patients were looked at with 100% ms/ccsvi link. At buffalo.


A bigger one with 500 is enough and feb is better than march..
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Postby cathyb » Fri Jan 15, 2010 2:51 pm

I am glad others are feeling the way I do about this whole thing...when I first heard about CCSVI, I was absolutely elated, because it is the FIRST time that an approach to this disease makes sense to me from a physiological perspective. Now I am scared because who knows, maybe its another hoax, another load of BS to go along with the other thousands of "cures." I remember being elated about Tysabri too, and look how well that turned out.
I used to know a man (he was about 65-70) that was extremely disabled with MS. This was about 10 years ago, right around the time Rebif came out and there was all that mess about Avonex having orphan status, blah blah. He was a VERY nice man, but you could see the disease (with all of its burdens), all of the drugs he had been given over the years for his MANY problems, the financial burden and the burden on his interpersonal relationships were a terrible weight on him that I could scarcely fathom. I'll never forget the day he said: "They have been telling me a cure is around the corner for most of my life." He said it with such defeat, and sarcasm. That is a TERRIBLE shame.
I don't want to be jaded anymore, so thank you so much for reminding me that the good news isn't just a dream. I need to hear it, and so do others like me (I can't be the only one who is scared of getting let down).
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Postby ozarkcanoer » Fri Jan 15, 2010 2:53 pm

There was a small pilot study at Buffalo that Dr Zamboni participated in that happened BEFORE the 1700 participant study was announced. The first 500 from the 1700 were unblinded in December and the results are supposed to be publicly announced in February. And they are going to continue (if they have the funding) with more participants until the 1700 are reached. But as far as I know the only announcement from Buffalo will be in February.

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