Missed an important study on CCSVI in newborn babies?

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

Missed an important study on CCSVI in newborn babies?

Postby AndrewKFletcher » Thu May 27, 2010 11:21 am

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
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
User avatar
AndrewKFletcher
Family Elder
 
Posts: 772
Joined: Wed Jan 14, 2009 4:00 pm
Location: Paignton, Devon, UK

Advertisement

Postby Cece » Thu May 27, 2010 11:48 am

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.
"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
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Postby jimmylegs » Thu May 27, 2010 5:40 pm

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.
jimmylegs
Volunteer Moderator
 
Posts: 9025
Joined: Sat Mar 11, 2006 4:00 pm

Postby Rokkit » Thu May 27, 2010 7:04 pm

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
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 3:00 pm

Postby sonia52 » Thu May 27, 2010 11:09 pm

You're right. Il was at the International uni0n of Phlebology meeting.
User avatar
sonia52
Family Member
 
Posts: 50
Joined: Tue Nov 24, 2009 4:00 pm
Location: Gatineau (Québec) Canada

Embryological background of truncular venous malformation

Postby AndrewKFletcher » Fri May 28, 2010 12:28 am

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.
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
User avatar
AndrewKFletcher
Family Elder
 
Posts: 772
Joined: Wed Jan 14, 2009 4:00 pm
Location: Paignton, Devon, UK

Postby thisisalex » Fri May 28, 2010 6:33 am

Andrew,

from the document:

Definition of venous malformations

VMs are developmental anomalies (birth defects)
of the venous system. They are the result of arrested
development of the venous system during the
various stages of embryogenesis. Together with
arterial, capillary and lymphatic malformations
they are part of a large group of congenital vascular
malformations (CVMs) which are developmental
anomalies of the peripheral vascular system.
...

TRUNCULAR LESIONS
These lesions are the result of the developmental
arrest that occurs during the “later” stages of
vascular trunk formation during the fetal development.
This arrest occurs long after the embryonic
(reticular) stage of vascular development is
over. These lesions are also known as “post-truncal
fetal lesions”.
Truncular lesions, therefore, do not have the
embryonic characteristics of the mesenchymal
cells (angioblasts) as observed in the extratruncular
lesions. These lesions no longer possess the
critical evolutional ability to proliferate. The risk
of recurrence after treatment is minimal to none.
These lesions have hemodynamic consequences
due to congenital valvular incompetence, obstruction
(atresia, hypoplasia) or dilatation/aneurysm
formation with associated risk of thromboembolism.
...

and
Truncular VM lesions may also occur in veins
with the same embryologic origin or draining the
same territory (e.g., stenosing lesions of the
extracranial jugular veins, superior vena cava, and
azygos vein system along the main outflow pathways
of the cerebro-spinal venous system as suspected
cause of multiple sclerosis)
...


Which means CVMs are congenital, by definition...

alex
User avatar
thisisalex
Family Elder
 
Posts: 218
Joined: Wed Dec 02, 2009 4:00 pm
Location: Hungary

Postby Cece » Fri May 28, 2010 7:40 am

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?
"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
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Postby 1eye » Fri May 28, 2010 10:23 am

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.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2924
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Postby babiezuique » Fri May 28, 2010 10:38 am

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!
User avatar
babiezuique
Family Elder
 
Posts: 121
Joined: Mon Dec 07, 2009 4:00 pm
Location: Montreal


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service