This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Wed Jun 19, 2013 1:51 am


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 8 posts ] 
Author Message
PostPosted: Mon Aug 06, 2012 11:22 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8554
http://www.plosone.org/article/info:doi ... ne.0041227
The entire paper is available. Just published 8/3/12.

The research was done by Doppler ultrasound, looking at patients with MS, CIS, other neurological diseases, and healthy controls. The conclusion is that a higher frequency of CCSVI is seen in MS patients, especially those with advanced disease, suggesting that CCSVI could be related to MS disability.

Although the association between CCSVI and MS was statistically significant, the actual number of MS patients found to have CCSVI was unexpectedly low: 28 out of 148, or 18.9%. I see this as more evidence that the Doppler is not the most reproducible or reliable way of measuring CCSVI.


Top
 Profile  
 
PostPosted: Mon Aug 06, 2012 10:29 pm 
Offline
Family Elder
User avatar

Joined: Sat Nov 28, 2009 4:00 pm
Posts: 267
Location: Victoria, BC Canada
Cece,

The ratio of CCSVI frequency, though, is identical to Dr. Zivadinov's blinded study, which I think was ~58% pwMS and ~22% "healthy" controls. Any blind study where one group is over twice as likely to show something than another has got to be statistically significant (I teach stats!). I agree a strict Doppler protocol is the most conservative measure to assess CCSVI, but if these ratios hold with more sensitive tests, we coud still be looking at ~40% controls when we near 90-95% frequency in pwMS. I think this study also shows that we should always expect -- and be prepared to explain -- why "healthy" cotrols test positive. When I was at ISNVD, Dr. Zivadinov said he found 42 other neurological conditions associated with CCSVI and 7 or 8 of them had equal or slightly higher prevalence than MS.

Fascinating!

~Sandra

_________________
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />


Top
 Profile  
 
PostPosted: Tue Aug 07, 2012 4:03 am 
Offline
Family Elder
User avatar

Joined: Thu Oct 19, 2006 3:00 pm
Posts: 1064
Location: Oxfordshire, England
Interesting data which confirms that CCSVI syndrome is found in neurological conditions. The data which says CCSVI is more prevalent later in the disease confirms another study. I remain at the 'diagnose and treat the syndrome' stage for CCSVI. Where CCSVI fits into neurological and immunological diseases is a question far into the future.
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html


Top
 Profile  
 
PostPosted: Tue Aug 07, 2012 8:47 am 
Offline
Getting to Know You...
User avatar

Joined: Fri Sep 25, 2009 3:00 pm
Posts: 22
Cece, 19.6% of positive CCSVI is ridiculous. Authors correctly say "A higher frequency of CCSVI has been found in MS patients", as the percentage of the healthy control group is 5%.
Furthermore, they suggest that "CCSVI could be related to MS disability" and not vice versa.
"CCSVI was significantly more frequent among MS subjects with a disease duration longer than 144 months (26.1% versus 12.6% of patients with duration shorter than 144 months; p = 0.03) and among patients with secondary progressive (SP) and primary progressive (PP) forms (30.2% and 29.4, respectively) than in patients with relapsing remitting (RR) MS (14.3%)".
The usual 'chicken and egg' problem.


Top
 Profile  
 
PostPosted: Tue Aug 07, 2012 10:28 am 
Offline
Family Elder
User avatar

Joined: Mon May 22, 2006 3:00 pm
Posts: 223
Location: Northern Calif Monterey Bay Area
masci wrote:
"CCSVI was significantly more frequent among MS subjects with a disease duration longer than 144 months (26.1% versus 12.6% of patients with duration shorter than 144 months; p = 0.03) and among patients with secondary progressive (SP) and primary progressive (PP) forms (30.2% and 29.4, respectively) than in patients with relapsing remitting (RR) MS (14.3%)".

I predict that eventually a connection will be made between CCSVI and MS disease activity in the brain stem and medulla.

One of the functions of the medulla is vasomotor control of the body, which includes blood vessel diameter and blood flow. Lesions in this area of the brain could have a direct causal relationship with vascular stenosis.

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user


Top
 Profile  
 
PostPosted: Thu Aug 16, 2012 2:49 am 
Offline
Family Member
User avatar

Joined: Sat Jun 27, 2009 3:00 pm
Posts: 63
Location: France
This is the new device in 3D, developped by Pr. Zamboni himself, to detect CCSVI 100% of the time.
Image


Top
 Profile  
 
PostPosted: Thu Aug 16, 2012 8:04 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4695
Location: southern California
This study, with lead investigator Patti, is part of the larger COSMO study. This group decided against using the protocol developed by Dr. Zamboni in 2010, and is being headed up by Comi---an Italian neurologist who is a very outspoken opponent of CCSVI studies. His ECTRIMS presentation last year was mentioned in the Italian press for his vitriol.
Quote:
During ECTRIMS 2011, which was held in Amsterdam October 19 to 22, a prominent Italian neurologist told the press that "the frequency of CCSVI was confirmed in less than 10% of pwMS" and "already the interim analysis of the COSMO study has completely deflated the hypothesis that CCSVI is a significant cause or significant contibuting factor in MS."

These statements have generated considerable buzz that they were not supported by any posters or abstracts the researchers normally present during the conference, and that the doctor who issues this statement is a relentless opponent of the theory of Professor Zamboni and has a major conflict of interest because of his relationships with pharmaceutical companies, which is easy to document.

All of this raises a number of important questions about the validity and fairness of the COSMO study, which was funded by the Italian Multiple Sclerosis Foundation , which over a year ago saw the controversy of the resignation of Dr. Zamboni from the scientific committee. The discoverer of CCSVI resigned because of failure of the commitee to comply with his diagnostic protocol.

Perhaps it would be useful to carefully reflect on the subject by the Scientific Committee of the AISM in the interest of patients and their families.
http://mediterranews.org/2011/10/metodo ... -dellaism/

This is only one location out of fifty in the COSMO study, and we can expect similar papers in the coming months.
http://clinicaltrials.gov/ct2/show/NCT01384825

(As fas as Tracy's posit--it may be in some cases, but Jeff has no medulla or brainstem involvement. He did have optic disc swelling and possible CSF and blood stagnation which is now gone, and his slight gray matter atrophy (as shown by enlarging ventricles) has reversed. His case looked more like normal pressure hydrocephalus (as indicated by papilladema) which resolved with stenting, but it may be different for others.) See the Dr. Frohman, NPH thread for more info.

This is obviously, a case by case situation---and there seem to be many different presentations. More research is essential. There are exciting discoveries being made every day.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


Top
 Profile  
 
PostPosted: Thu Aug 16, 2012 8:46 am 
Offline
Family Member
User avatar

Joined: Sat Jun 27, 2009 3:00 pm
Posts: 63
Location: France
cheerleader wrote:
This group decided against using the protocol developed by Dr. Zamboni in 2010, ...
I read the opposite in the study description...
Quote:
ECD and TCC ultrasonographies were performed by a single experienced vascular sonographer who attended a course on CCSVI held by Dr Zamboni at the University of Ferrara in 2011. In order to correctly apply the ECD ultrasonograph Zamboni’s criteria for the diagnosis of CCSVI, before the beginning of the study, he also received a further training at the same University.

A GE Vivid E Ultrasound system (GE Healthcare, Horten, Norway), equipped with a 8L-RS (4–12 MHz) linear array transducer was employed for the study of internal jugular vein (IJV) and vertebral veins (VVs) while a 3S-RS Sector Array Probe (1.5–3.6 MHZ) was used for the study of the deep cerebral veins (DCVs). Furthermore a special C-RS Microconvex Ultrasound Probe was used to study internal jugular veins (IJV) under clavear points.

Following the Zamboni’s procedures [7], the exam comprised orthostatic and clinostatic evaluations of both the IJV and vertebral veins (VVs), and the direction of the flow in the internal cerebral vein, the vein of Rosenthal and the vein of Galeno.

The following five parameters were evaluated for each case and control subjects

Reflux in the IJV and/or VVs in sitting and supine posture;
Reflux in the DCVs;
High-resolution B-mode evidence of IJV stenosis;
Flow not Doppler detectable in the IJVs and/or VVs;
Reverted postural control of the main cerebral venous outflow pathways.

In agreement with literature data, presence of CCSVI was defined as the presence of at least two out of the five parameters [7].


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 8 posts ] 

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. duration of disease not correlated with severity of CCSVI

[ Go to pageGo to page: 1, 2 ]

Cece

28

2206

Fri Nov 26, 2010 3:20 pm

Cece View the latest post

There are no new unread posts for this topic. CCSVI classified as a disease!

savannahstarr

2

1065

Tue Jan 26, 2010 4:28 pm

jay123 View the latest post

There are no new unread posts for this topic. Lyme Disease and CCSVI

[ Go to pageGo to page: 1, 2, 3 ]

GuRu

39

4653

Thu Jan 26, 2012 6:48 pm

Cece View the latest post

There are no new unread posts for this topic. CCSVI, Fatigue and Disease Progression: Connected ?

Shayk

6

1229

Tue May 18, 2010 7:19 pm

Shayk View the latest post

There are no new unread posts for this topic. Patient with Lyme disease had CCSVI Treatment

dania

0

774

Thu Sep 01, 2011 1:23 pm

dania View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to:  


News News Site map Site map SitemapIndex SitemapIndex RSS Feed RSS Feed Channel list Channel list
Read hundreds of personal Multiple Sclerosis stories on Experience Project. Experience Project is an anonymous community where people connect through their life experiences, made by the same people who built This is MS. With over 30 million personal stories about every possible life experience, you can quickly find people like you!


Interesting: Secret Confessions | Dream Meanings | Ask Questions, Get Answers

Advertise on the premier multiple sclerosis forum