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


Postby hargarah » Wed Aug 11, 2010 10:28 am

Just to put this out there:

I have seen so many posts and articles related to studies worldwide that question the validity of CCSVI. I have also read that the criterion of these studies is questionable and "smoke and mirrors" may be at play.

My final conclusion to everyone is "If you stood to lose billions of dollars, as the drug companies do, wouldn't you sponsor hundreds of studies with hidden agendas, wouldn't you spend money lobbying government to delay clinical trials, wouldn't you even hire "special sufferers" to post disappointing results from fake procedures on THIS site and many others?"

DON'T PUT IT PAST DRUG COMPANIES TO DO THIS! They spend millions of dollars in PR consulting salaries! I am a Management Consultant and TRUST ME, when Management asks me to prepare a presentation that reflects the outcome "THEY WANT TO BE SEEN", I do it! And if I don't...well, I won't be paid my full per diem, and never hired by that company again!
Last edited by hargarah on Wed Aug 11, 2010 10:37 am, edited 2 times in total.
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Postby sbr487 » Wed Aug 11, 2010 10:33 am

why else do you think:
- Freedman said it is a hoax without providing any explanation
- Khan said it is like bee sting therapy
- German team called it valueless without providing any explanation
- Khan said that studies will prove CCSVI wrong (he was predicting the outcome)

They were probably representing pharma or showing their gratitude for all that is for them ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby Chrystal » Wed Aug 11, 2010 11:09 am

Further to the comments above which I agree with, have a look at what Dr. Sclafani has written about the European Studies...

As posted on CCSVI in MS Facebook… Dr. Sclafani responds to the quickly published negative studies in the Annals of Neurology--thanx Rox!

http://www.facebook.com/notes/ccsvi-tra ... 7845020797

Dr Sclafani's view on German and Swedish studies on CCSVI (posted in ThisisMS forum) by Ccsvi Transverse Myelitis on Wednesday, August 11, 2010 at 6:38am

Dr Sclafani has kindly answered to the following question I posted him in thisisMS fourm:

Dear Dr Sclafani,

Have you read the German and Swedish studies re Chronic Cerebrospinal Venous Insufficiency commented in the Wall Street Journal?
http://online.wsj.com/article/SB1000142 ... 10380.html

Did these studies use the doppler ultrasound with the right protocols?


Dr Sclafani's response
11 August, 2010

It is regretful that Drs. Doepp and co-authors' attempt to reproduce Professor Zamboni's discovery of a link between multiple sclerosis and disturbance of the outflow veins of the brain and spine has been unsuccessful.

It is particularly unfortunate that the authors' misunderstanding of Dr. Zamboni's publications about this subject have led to their conclusions that "No cerebrocervical venous congestion in patients with multiple sclerosis" exists.

The authors mis-state several of the criteria for a positive ultrasound examination. They state that reflux must be present in both internal jugular veins or both vertebral veins. This is not accurate. Reflux in any one of these veins was considered a positive criteria by Zamboni.

It appears to me that Dr Doepp and colleagues have tried to elicit reflux by testing for incompetent valves in the lower jugular vein. Incompetent valves result in reversal of blood flow from the heart back up into the jugular veins. They used the Valsalva maneurer, a technique to increase pressure in the chest that reverses blood flow. However, Zamboni explicitly states that one should assess flow "never in (by) a forced condition such as the Valsalva manoeuvre."

That the authors' attempts were unsuccessful is not surprising. The ultrasound examination used by Zamboni is a simple one but the description of the technique has not been fully elaborated in his papers.

Thus performance of the ultrasound by some investigators is often at variance and this may lead to differences of results. At my own institution, we were surprised that non-invasive testing by ultrasound did not correlate with the very obvious obstructive phenomena seen on catheter venography, which remains the Gold Standard of assessing veins. We also had difficulty identifying CCSVI on ultrasound, initially using the Valsalva maneuver during out testing. In fact we were able to find an obstruction in only one patient of twenty. It was only after being shown how to correctly perform this simple screening test by the Zamboni team during a visit to Ferrara, that we have become facile in detecting these abnormalities. It is clear that there is a learning curve to the use of this technique.

Nor does this paper refute the concept of CCSVI. Doppler ultrasound is only a screening test for CCSVI. When Doppler shows signs of CCSVI, the gold standard test of catheter venography is indicated to detect the sites of potential obstruction.

Doppler is not the definitive test of CCSVI because it cannot assess the azygous vein, an important contributor to cerebrspinal venous outflow resistance. Catheter venographies routinely show evidence of outflow obstructions. Sluggish flow, reversal of flow, extensive collateral veins, strictures, duplications, reversed valves, thickened incompletely opening valves and misplaced valves are among the many abnormalities seen in MS patients that we never see in patients without MS.

The paper by Sundstrom and coauthors similarly rejected the CCSVI hypothesis by performing MR venograms and flow quantification in the neck. MR venography is suboptimal as a screening test because it underestimates and overestimates stenoses quite regularly.

One can see from their illustrations two MRV images. It is noteworthy that neither image shows the portion of the jugular vein where lesions causing flow resistance are usually found: behind the clavicle as the vessel enters the chest. Both images show considerable collateral vasculature suggestive of CCSVI. Moreover the image on the right on page 258 purports to show a stenosis with an arrow. It is well known that most of the narrowings referred to by the white arrow are a common transient, non-stenotic narrowing caused by a true narrowing below the clavicle. Catheter venography shows abnormalities that cannot be detected by MRV.

I was struck by the rapidity of publication of both articles. Surprising! Both papers were accepted within six weeks. I have never had such rapid decision, editing and publication of any of my more than 120 publications.

This debate is going to be a challenging one. One side wants randomized prospective trials to prove efficacy.

However while many proceduralists have noted sometimes impressive gains for patients, these proceduralists need to evaluate nuances of techniques before consensus can be built regarding the best approach to therapy. Only then can intelligent, carefully designed randomized prospective trials begin. Some who commonly perform randomized trials will try to reduce the work of those who will try to develop the best practices because they are not randomized. However, in my view this is a necessary initial step toward the final trials.
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