This Is MS Multiple Sclerosis Knowledge & Support Community

New to CCSVI or refreshing your memory on what Prof Zamboni says, START HERE:
http://phleb.rsmjournals.com/cgi/reprint/25/6/269
MarkW

http://www.ejves.com/article/S1078-5884(11%2900593-4/fulltext

In his latest study, published in this issue of the Journal, he expands on this now calling it the CCSVI syndrome.3 This is not just semantics, it is (as I will come back to later) a clever PR strategy, just moving with small steps to increase territory. A syndrome is more than a finding. It is any combination of signs and symptoms that are indicative of a particular disease or disorder. So by calling it a syndrome, CCSVI is now indicative of MS.

Hello Cece,
If you feel like writing a reply you could based it on my Telegraph article with updates. A definition of a syndrome is essential as the author is clearly wrong on this. Happy to co-author with you but do not have time do it on my own.
MarkW

I hate to admit that I am fuzzy on the definition of syndrome.
I think that by calling it a syndrome, it gets MS out of the definition. It is not that CCSVI is indicative of MS as that gentleman said but that CCSVI blockages and intraluminal abnormalities and flow abnormalities and CCSVI symptoms like fatigue are indicative of CCSVI syndrome. And CCSVI syndrome is worth treating in and of itself.

Hello Cece,
Here is a succinct definition from the merriam-webster dictionary:

A syndrome is a group of signs and symptoms that occur together and characterize a particular abnormality or condition.

MarkW

Cece wrote: http://www.ejves.com/article/S1078-5884(11%2900593-4/fulltext

In his latest study, published in this issue of the Journal, he expands on this now calling it the CCSVI syndrome.3 This is not just semantics, it is (as I will come back to later) a clever PR strategy, just moving with small steps to increase territory. A syndrome is more than a finding. It is any combination of signs and symptoms that are indicative of a particular disease or disorder. So by calling it a syndrome, CCSVI is now indicative of MS.

I just re-read the quote. The author should have said "A syndrome is more than a finding. It is any combination of signs and symptoms that are indicative of a particular disease or disorder. So by calling it a syndrome, MS is now indicative of CCSVI syndrome". So Z&G's paper simply says if you have MS look for CCSVi syndrome.
MarkW

After the heat generated by the FDA's actions, or just refreshing your memory on what Prof Zamboni says, it is well worth STARTING HERE:
http://phleb.rsmjournals.com/cgi/reprint/25/6/269
MarkW

Lots of goods points already made about this paper. New thread copied for completeness................MarkW

Valves are only one issue.....
by dania » 02 Jul 2012, 20:23
http://www.facebook.com/notes/ccsvi-in- ... 7809462211
daniaFamily Elder Posts: 707Joined: 12 May 2010, 22:00Location: St Lazare Quebec
--------------------------------------------------------------------
Re: Valves are only one issue.....
by Cece » 02 Jul 2012, 20:43
The types of malformations found by Dr. Zamboni in his published research have included:
•Annulus refers to significant circumferential stenosis of the whole venous wall;
•Septum/valve malformation refers to anomalous valve apparatus causing significant flow obstacles at the level of the junction of the IJVs with the brachiocephalic/anonymous trunk;
•Hypoplasia refers to under-developed long venous segments;
•Twisting refers to severe stenosies in consequence of a twisted venous segment;
•Membranous obstruction (web) refers to a membrane almost occluding a vein;
•Agenesis refers to the complete anatomical absence of a venous segment.
I have been understanding annulus to mean the 'ring' of the valve, to which the leaflets attach. This is circumferential and it can be a stenosis, but it would always be as a component of the valve. Can an annulus exist without a valve, as defined here?
Valves are typically at the level of the junction of the IJVs with the innominate vein, but I thought septums could exist anywhere within the vein. A septum is not an anomalous valve aparatus but more of a sail or divider of the vein. I don't think they originate as valves but I don't know exactly how they do originate.
Hypoplasia can be long or short segments, but yes, underdeveloped veins. I do not think treatment of hypoplasias have been optimized. Low flow through hypoplasia increases the chance of clotting. Better to have a malformed valve or septum than a hypoplastic vein segment.
We don't hear much about membraneous obstruction and webs.
Agenesis may be the rarest of all of these.
CeceFamily Elder Posts: 7678Joined: 04 Jan 2010, 23:00
Top
--------------------------------------------------------------------------------
Re: Valves are only one issue.....
by NHE » 02 Jul 2012, 22:49
Cece wrote:
The types of malformations found by Dr. Zamboni in his published research have included:
•Twisting refers to severe stenosies in consequence of a twisted venous segment;
Dr. Sclafani has mentioned that twisted veins are uncommon.
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-6525.html?#p188457
NHE
NHEVolunteer Moderator Posts: 2284Joined: 20 Nov 2004, 23:00
Top
--------------------------------------------------------------------------------
Re: Valves are only one issue.....
by dania » 02 Jul 2012, 23:16
Size of veins also seems to be an issue. Mine are infantile not even juvenile. Others have reported that their veins are also small.
daniaFamily Elder Posts: 707Joined: 12 May 2010, 22:00Location: St Lazare Quebec
Top
--------------------------------------------------------------------------------
Re: Valves are only one issue.....
by Music » 03 Jul 2012, 02:36
These are my original MRV findings. Dania, maybe we have similar veins?? Mine are listed as diminutive - is this what they refer to as hypoplasia? What about the "flattening" reference? I don't know if I've seen this term before. CCSVI procedure found a malformed left valve.
"There is minimal-caliber flattening of the right internal jugular vein at the Cl level. Moderate-caliber
flattening is seen involving the right internal jugular vein as it passes beneath the stemocleidomastoid
muscle. It resumes normal caliber near its brachiocephalic confluence.
The left internal jugular vein is diminutive throughout much of its imaged length. There is significant
caliber flattening at the Cl level. Additionally, it remains diminutive as low as the C3-C4 level and is
accompanied by scattered small veins which may represent collaterals. It appears to demonstrate a
normal caliber at approximately the C4-C5 level and is moderately flattened as it traverses beneath the
stemocleidomastoid muscle. Its caliber appears normal at its brachiocephalic confluence. Both internal
jugular veins appear to enhance in an antegrade fashion on time-resolved, contrast-enhanced MR
venography".
MusicFamily Member Posts: 42Joined: 20 Aug 2010, 22:00Location: Calgary, Alberta, Canada
Top
--------------------------------------------------------------------------------
Re: Valves are only one issue.....
by dania » 03 Jul 2012, 02:49
Mine are infantile everywhere. They must use a butterfly needle to get a blood sample from me. Cannot be done with a regular size needle. Plus every time they try to get a central line in it is hell. Takes some many times before they get it.
daniaFamily Elder Posts: 707Joined: 12 May 2010, 22:00Location: St Lazare Quebec
Top
--------------------------------------------------------------------------------
Re: Valves are only one issue.....
by Music » 03 Jul 2012, 03:23
Just had blood tests last week - couldn't find a vein in either arm - has happened before a couple of times - happens to my daughter too - finally use the top side of my hands.
MusicFamily Member Posts: 42Joined: 20 Aug 2010, 22:00Location: Calgary, Alberta, Canada
Top
--------------------------------------------------------------------------------
Re: Valves are only one issue.....
by dania » 03 Jul 2012, 03:37
Tell them to use a butterfly needle. Smaller and a lot easier on everyone.

Here is another crucial paper from Zamboni's team. Here is another thread on this topic but I am trying to make it simple for newbies to find Prof Zamboni's key papers.
MarkW

http://www.functionalneurology.it/commo ... 1ead753ee5

The master's voice...................bump.
MarkW

http://www.ingentaconnect.com/content/m ... 8/art00006
another paper by Zamboni
CCSVI is associated with MS

Thanks for the post Cece. I really like the discussion, apart from the last word 'autoimmunity' (immunity is the better term). With the recent research on gene switches in our genome (previousy called junk DNA), I feel sure that we will begin to understand the environmental/biological factors in the coming decades. With at least 57 genes associated with MS, that means a lot of different switches and factors to be identified.
Kind regards,
MarkW

Discussion: Taking into account the current epidemiological data, the autoptic findings, and the relationship between CCSVI and both hypoperfusion and cerebrospinal fluid flow, CCSVI can be inserted in the list of multiple factors involved in MS pathogenesis. Our careful data analysis may conclude that great variability in prevalence of CCSVI in MS patients can be a result of different methodologies used in venous ultrasound assessment. Finally, it has been proven that CCSVI share the three main risk factors with MS. On the other hand, smoking is the most important risk factor for endothelial cell damage, vitamin D has a protective role and Epstein‐Barr virus passes the blood‐brain barrier by invading the endothelial cells, therefore, epidemiologically, linking the imbalance of these three factors to MS through autoimmunity.

From Team Zamboni..........."CCSVI can be inserted in the list of multiple factors involved in MS pathogenesis."
MarkW

Here are three crucial papers which must be read for an overview of CCSVI syndrome:
First - http://phleb.rsmjournals.com/cgi/reprint/25/6/269
Then - http://www.functionalneurology.it/commo ... 1ead753ee5
Next - http://www.ingentaconnect.com/content/m ... 8/art00006
-----------------------

It is 2 months since I bumped Prof Zamboni's work. The most recent paper from Team Zamboni..........
"CCSVI can be inserted in the list of multiple factors involved in MS pathogenesis."
Here are three crucial papers which must be read for an overview of CCSVI syndrome:
First - http://phleb.rsmjournals.com/cgi/reprint/25/6/269
Then - www.functionalneurology.it/common/php/p ... 1ead753ee5
Next - http://www.ingentaconnect.com/content/m ... 8/art00006
-----------------------