This Is MS Multiple Sclerosis Community: Knowledge & Support

I have a question for the forum regarding the classification of CCSVI as congenital (developed in the womb)

Can someone direct me to the study that proved CCSVI is congenital please as I have failed to find it myself?

I read about a panel of experts deciding to label CCSVI as congenital but need to find where they got their stats from to make this statement?

Andrew

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I think the experts have an understanding of what sort of malformations are from birth, and missing jugulars, backwards valves and these sorts of things are among them. One of the bigger distinctions of the paper was whether it was truncular or extratruncular congenital vascular malformations. If they were extratruncular, from the very earliest fetal development, they'd have been likely to keep on growing. Since they are truncular, they grow with the rest of the body at the rate that it grows but do not return or overgrow in tumerous ways.

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"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

I think that was the one I heard about at St Mikes in TO, i'd heard about it in the winter but I stopped checking clinicaltrials.gov once I found out it was not to be a study on current sufferers of MS.
just searched the database again, for CCSVI, and all it came up with was the forthcoming Mehta study.

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Andrew, I'm pretty sure you're talking about the International uni0n of Phlebology. Here is a good place to start on that, there are some links on that page that will take you to Cheer's facebook notes about it and to the official pubmed document.

http://csvi-ms.net/en/content/consensus ... y-iup-2009

You're right. Il was at the International uni0n of Phlebology meeting.

Still looking, all I have found so far is the following hypothesis, which I am sure you will agree does not provide conclusive evidence for congenital abnormalities leading to early CCSVI development.

My point here is it is very bad science to prematurely label CCSVI as congenital when no study on either developing embryo or new born babies has identified a proven connection.

That said, it is entirely possible that the soft veins in the developing baby can be affected after birth but even this does not prove CCSVI is of congenital origin.

This congenital label requires serious consideration and will undoubtedly be questioned by many in the future leading to considerable controversy.

Unless a study has been conducted to prove whether CCSVI is congenital, which is probably impossible, it is completely irresponsible to jump to assumptions about the cause and cast them in stone without supporting evidence.

Andrew K Fletcher




Int Angiol. 2010 Apr;29(2):95-108.
Embryological background of truncular venous malformation in the extracranial venous pathways as the cause of chronic cerebro spinal venous insufficiency.

Lee AB, Laredo J, Neville R.

Department of Vascular Surgery, Georgetown University Hospital, Washington, DC, USA.
Abstract

The truncular venous malformation (VM) represents an embryologically defective vein where developmental arrest has occurred during the vascular trunk formation period in the 'later stage' of the embryonic development. A relatively simple truncular VM lesion such as a venous web at the hepatic venous outlet causes portal hypertension giving a profound damage/impact to the liver. A similar condition involving the head and neck venous system may cause chronic cerebro-spinal venous insufficiency (CCSVI) and may be involved in the development or exacerbation of multiple sclerosis.

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Andrew,

from the document:



and


Which means CVMs are congenital, by definition...

alex

I don't think Andrew is looking for information, he is trying to make a point...and I don't consider it made.

These guys are experts, they know their field. Exactly how do you propose that a backwards valve gets backwards?

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"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

I hope we do not all have to become doctors or scientists before we can get together and prove we should all be treated. I have seen a lot of educated and uneducated guessing going on and I think it's because we are being left to spin our wheels while the MS money machine shifts gears.

The MS Society does not represent me in politics or the areas research money gets spent. They are under-qualified to decide the directions science or medicine should take. They exist to help people who are unable to help themselves due to having MS. But they have overstepped their authority when they allow themselves to become single points of contact between government and medicine in answering people's demands for CCSVI treatment. Raising funds is one thing, but I think being experts in medicine should be left to doctors, and being experts in government should be left to the elected. (I think research should be left up to scientists and not bankers, too).

It is two instances of the same problem, isn't it? We are willing to try to achieve some kind of notoriety using these modern communication tools and get our ad-hoc unguided degrees in science and medicine because other people will listen. On the Internet, no-one knows you're an armadillo. The MS Society is willing to advise 10 Downing street because they are seen as experts. They have all this money and power that only came to them because of the really really expensive drugs that we have been spending billions on, only in the last few decades. Why them? Well, that's what I'd like to know. Who gave them my piece of cheese?

I, too, can read technical literature. But the revolution will not be televised, and the Internet is not a degree-granting institution. We all need to try to make the best of a bad situation. Biogen and Teva and others, if they really are interested in neuroscience, can make drugs that help remove iron or fix whatever the links are, in the chain from vascular malformation to brain malfunction, as they are uncovered. They will survive. I just want my veins dilated.

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1eye

''The MS Society does not represent me in politics or the areas research money gets spent. They are under-qualified to decide the directions science or medicine should take. They exist to help people who are unable to help themselves due to having MS. But they have overstepped their authority when they allow themselves to become single points of contact between government and medicine ''

This is it... you siad it ! Nothing else have to be said.... Well, a lot have to be done...But why them, why are interviewed everywhere....why so much of them every where... They dont have specific medical background if yes... it is always attach to pharmas...

I so agree with you!