BNAC study shows CCSVI not in all MSer's or cause

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

Postby MegansMom » Wed Apr 13, 2011 5:25 pm

This study is about MRV which we already know misses many CCSVI occurances. Doppler too is far from accurate

Catheter venography is the only "gold star" diagnostic tool for CCSVI and even then IRs can miss some of the hard to detect anomalies.!

Seems that the Neurology Journals are chosing the Propaganda path ....... only articles that dont give the whole picture or anti CCSVI

Its pretty bad when patients know more research details than the doctors !

But then again I am not obliged to any BIG PHARMA for advertising dollars. or honorariums.

Too bad they are missing all the preliminary studies, by the time its the standard they will all need to go back to school to catch up.

I wonder if any of them feel dupedand propaganized?There must be some that feel this way?
Cat (Catherine Somerville on FB)
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby muse » Wed Apr 13, 2011 5:46 pm

jimmylegs wrote:am i missing something? i don't see anything inconsistent in starting research in 2009 and releasing some findings in 2011


Why they are presenting “cold coffee” from 2009/10 as HOT & CONTROVERSINAL NEWS??? And why didn’t they report about the current BNAC study which is a 100% replication of Zamboni’s study???
Last edited by muse on Wed Apr 13, 2011 5:56 pm, edited 1 time in total.
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Postby MrSuccess » Wed Apr 13, 2011 5:55 pm

we have all come a long way since Professor Zamboni has given us his great discovery .

The initial hurdle to overcome ..... was the ability to detect whether or not pwMS had unusual neck veins ...... using Doppler radar.....

This has been accomplished .

We have now moved on from the APPEARANCE of the neck veins to the more important aspect ...... are these veins producing FLOW ?

Once again .... Professor Zamboni ...... using new technology ..... has answered this question . pwMS have FLOW restrictions .

Question : Do normal controls that show CCSVI .... have normal blood flow ? Does the BNAC answer that question ? :?: :?: :?: :?: :?: :?:

And finally ..... we now are being given information ..... by fellow CCSVI investigators ...... that the neck veins are rife with INTERNAL obstacles .
By using IVUS technology. We've come a long way , baby.

Appearances can be deceiving .


It's all good , people ..... it's all good.





.....when I walk in a room ...... no one knows who I am ..... put your head on my chest ....... 'cause I'm ...

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Postby Cece » Wed Apr 13, 2011 6:20 pm

Oh look the Wall Street Journal has some coverage of it...I just love when WSJ does CCSVI articles...(bitterness still stemming from WSJ's article in March 2010.)

'MS Study Debunks Blocked-Vein Theory'

http://online.wsj.com/article/SB1000142 ... 37192.html

MS expert Lawrence Steinman, a neurologist at Stanford University, said, "Certainly the [vein blockage] hypothesis carries less and less evidence the more that it's studied. He cautioned that "people running around the world to get this procedure done ought to look at the evidence and save themselves the money."

I am so glad I did not save myself the money; instead I just saved myself. ;)
(Doing well, 2 months post-procedure.)
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Postby 1eye » Wed Apr 13, 2011 6:27 pm

I would hope you could study venograms on people who have not passed a screening tool. What are we screening out here? It is not useful to screen out the false negatives, when so many supposedly healthy people can have positive results that indicate serious outflow obstructions, and so many people who have serious symptoms can have very difficult to find problems that can only be found with IVUS.

Let us face facts. Millions of people have already been diagnosed with CCSVI, by being diagnosed with 'MS'. People with 'MS' are not malingererers looking for unnecessary fluoroscopy. They are really sick.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Postby MrSuccess » Wed Apr 13, 2011 6:30 pm

.... the longer I leave the steaks on the BBQ .... they seem to get a bit drier .... and burnt ..... I'm not sure what causes that ...

I'll look into it. :wink:



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Postby Cece » Wed Apr 13, 2011 6:34 pm

You need to start with imaging tests, MrSuccess. Get a beat-up old junk-sale camera. Stand as far away from the BBQ as possible, there are risks you know. Take pictures and look for patterns in the smoke. In two years we should have preliminary answers.
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Postby dreddk » Wed Apr 13, 2011 6:51 pm

An Occam's Razor conclusion is that the CCSVI is caused by MS. This study supports the findings of the Beiruit study and others http://www.thisisms.com/ftopict-14530-lebanon.html

That's not to say that there is no merit in treating MS. Just that treating CCSVI appears very unlikely to prevent MS.

From the Beiruit Paper

"It is more likely to be a secondary phenomenon, possibly present in other neurological diseases, reflecting chronic brain disease and atrophy. The exact mechanism of such process is unclear, since the extracranial venous system, especially in the spinal cord, has never been adequately investigated in chronic neurological diseases. We hypothesize that chronic degenerative brain diseases resulting in significant brain atrophy and tissue loss might lead to a decrease in the volume of venous drainage, resulting ultimately in venous stenosis. In MS specifically, chronic perivenous inflammation might hypothetically lead to release of certain inflammatory mediators that might alter the venous endothelium or lead to venous valvulitis resulting in venous stenosis."
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Postby WeWillBeatMS » Wed Apr 13, 2011 7:10 pm

jackiejay wrote:why is it always bad news coming from Zivadinov and friends?...


1) He's a neurologist. 2) He's probably on the take from Biogen, Elan, Novartis, etc.

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<div>WeWillBeatMS<br /><br /><br />Zamboni for President!</div>
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Postby Lyon » Wed Apr 13, 2011 7:12 pm

Cece wrote:Get a beat-up old junk-sale camera. Stand as far away from the BBQ as possible, there are risks you know. Take pictures and look for patterns in the smoke.
So these are the caliber of responses to be seen in response to two recent legitimate and unfavorable CCSVI studies?? The "science" of overcooked meat on the bbq and that the researchers are on the take? http://www.thisisms.com/ftopic-16122-0.html
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Postby WeWillBeatMS » Wed Apr 13, 2011 7:31 pm

Do you mean this study?

"Higher CCSVI Prevalence Confirmed in MS, but Meaning of Findings Remains Unclear"

That one?

Oh OK.


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Postby jimmylegs » Wed Apr 13, 2011 7:32 pm

muse for myself, i didn't get the impression that they were coming off particularly hot and controversial... just presenting findings, making conclusions for other scientists to critique, and then attempt to replicate or refute, and so the cycle goes.

just out of curiosity, can you link to the current bnac study you mentioned above?
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Postby Cece » Wed Apr 13, 2011 7:37 pm

Lyon wrote:So these are the caliber of responses to be seen in response to two recent legitimate and unfavorable CCSVI studies??

I joined in January 2010, when everyone was breathless waiting for the BNAC results to come out. We heard the 56% figure in February, 2010, iirc. That is a lifetime ago when it comes to CCSVI.
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Postby Lyon » Wed Apr 13, 2011 7:38 pm

WeWillBeatMS wrote:Do you mean this study?

"Higher CCSVI Prevalence Confirmed in MS, but Meaning of Findings Remains Unclear"

That one?

Oh OK.


WeWillBeatMS
CCSVI Prevalence Confirmed in MS wrote:"These findings indicate that CCSVI does not have a primary role in causing MS," says Zivadinov. "Our
findings are consistent with increased prevalence of CCSVI in MS, but substantially lower than the
sensitivity and specificity rates in MS reported originally by the Italian investigators."
I didn't have that in mind but....yeah, I guess that would do.
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Postby Cece » Wed Apr 13, 2011 7:39 pm

I wonder if plethysmography will end up being a better choice for these research studies than the doppler ultrasound.
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