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jimmylegs wrote:just out of curiosity, can you link to the current bnac study you mentioned above?

sure. http://www.buffalo.edu/news/12469

WeWillBeatMS

Cece wrote:

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.

I agree with what you're saying but I don't understand the correlation??

A possible factor is that I probably wasn't clear enough in what I considered the "two recent legitimate and unfavorable CCSVI studies"

One is this BNAC information to be presented at AAN and the other is the "Proposed CCSVI criteria do not predict MS risk nor MS severity" from Annals of Neurology.

not recent, year-old, already been discussed A LOT back then....

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."

So valvulitis is a leading cause of valvulitis, and certain inflammatory mediators might lead to release of certain inflammatory mediators, possibly present in other neurological diseases, the exact mechanism of which is unclear, except that it probably involves something we might never have adequately investigated, the extracranial venous system.

Chronic brain atrophy is obviously much more important to venous drainage than little things like valvulitis, which after all is caused by brain atrophy, as well as by valvulitis. It is much more important than things like stenosis, venous malfomations of various kinds, and all venous pathology in general, which is without exception caused by unknown processes resulting in brain atrophy, except for those that cause vein problems.

It just stands to reason.

Cece wrote:not recent, year-old, already been discussed A LOT back then....

Welllllll, it seems that the BNAC researcher's take on the implications of that info is the "new" and "recent" part.

After all the praise the BNAC researchers have gotten in regards to their objectivity through the last year or so is making the current whining about bias and being on the take a little hard to take seriously.

When the proponents publish unfavorable info it's time to have second thoughts and NOT dig your heels in deeper.

You know what's really hard for me to believe? That a guy who knows so much about CCSVI wouldn't pony up the $400, or whatever it would be if insurance didn't cover it, to have his wife at least tested for CCSVI with ultrasound. Not to mention the close proximity you have to Dr. Haacke's facilty in Detroit to test for the quantity of iron she might have in her brain. Maybe I'm wrong and you did already have her checked and you're relieved that she doesn't have blocked veins. I hope I am wrong. Tell me I'm wrong please.

WeWillBeatMS

1eye wrote:
It just stands to reason.

WeWillBeatMS wrote:to have his wife at least tested for CCSVI with ultrasound. Not to mention the close proximity you have to Dr. Haacke's facilty in Detroit to test for the quantity of iron she might have in her brain. Maybe I'm wrong and you did already have her checked and you're relieved that she doesn't have blocked veins. I hope I am wrong. Tell me I'm wrong please.

You're not wrong and that is something we would seriously consider.......if there was good reason to think that "blocked veins" was something that affected people with MS at a higher rate than "normals" or that people with MS have higher amounts of iron in their brains OR that ANY OF THAT would cause a problem IF proven..

Cece wrote: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.)

I'm grateful that the Big Business/multi billion dollar corporations-friendly WSJ both showed journalistic integrity by bluntly reporting the facts, that CCSVI is now case closed, but also, shed some light on a long standing mystery, namely, what exactly is the stance of neurologists at Stanford concerning CCSVI?

Would that all journalism strove to such austere heights.

I mean, if the WSJ says so, it must be, right?

muse wrote:“…The results of the UB study are based on 499 participants in the Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study, which began at the university in April 2009 [/i] Release Date: April 13, 2011 Source: http://www.buffalo.edu/news/12469

“…Concludes Zivadinov: "The differences between our study, the original Italian CCSVI study and other recently published studies also emphasize the need for a multimodal approach for the assessment of CCSVI. In addition to Doppler sonography, use of selective venography, magnetic resonance VENOGRAPHY AND intraluminal DOPPLER methods can provide more evidence for the true prevalence of CCSVI in MS…." Source: http://www.buffalo.edu/news/12469

Those numbers are just the interim results of the DOPPLER EVALUATION (CTEVD) study, from 2009! At this stage there wasn’t any venography done either which is the gold standard to diagnose CCSVI

Please read the notes by Joan/cheer:

and the latest paper done by Zivadinov/BNAC as well.

http://www.ajnr.org/cgi/reprint/ajnr.A2 ... e=HWCIT&ct

Exactly, what are the TRUE prevalences, Dr. Zivadinov asks. Hope everyone caught that.

Case closed? nah, just getting started. So neuros want to grab the reigns and be in control, no shocker there. Toss a few cogs in the wheels here and there to slow things down. Then you can frame the course of events to your own liking.

It's about control. A lot of things in CCSVI are about control. The pie is getting carved up, make sure to reserve your slice today.

That’s the paper of the Zivadinov/BNAC study:
http://www.ajnr.org/cgi/reprint/ajnr.A2 ... e=HWCIT&ct
which was discussed at TIMS at length:

one more time .... this BNAC information tells us that they HAVE found CCSVI in pwMS. The numbers change ..... as is reflected in the degree of disability ...... no big surprise there .... hence, the BBQ joke.

This BNAC study only serves to excite the Neurologists at the Big Hawaii Bun Toss.

So what have they been told ?

Answer : The BNAC examined a variety of pwMS and some healthy controls - using Doppler - and found a variance of results .

As we now know ...... this is only the first step in the process of identifying pwMS ..... or some other condition. To simplify .... they have a non-invasive medical procedure [ Doppler radar ] proof .... of unusual looking veins in the neck , that drain the blood from the head back to the heart.

This evidence DOES NOT prove or disprove ..... blood flow.

Blood Flood needs to be measured. That's the next step. And Professor Zamboni has done this . [ See the Neck Collar thread ]

I DO NOT see the 500 person BNAC study reporting blood flow ....this is the logical next important step.

But that's not to criticize the BNAC . They did as they said they would .... test some people for CCSVI ....... using Doppler Radar only.

IDEA : Call all 500 test subjects back ..... and test for FLOW.

I applaud the fine work of Dr. Zivadov and Bianca- Weinstock ...... and I end this post quoting the headline of their report .....

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

Enough said . Bob .... do you know what UNCLEAR means ?



Mr. Success

I think most of us who want CCSVI to be "the answer" will try to poke holes in the methodology of a negative study while praising to the skies an equally-flawed positive study...that is just human nature.

If there were some just non-invasive, easily-learned, accurate tool that could measure blood flow in people with or without MS...oh wait, there is.
isn't there? Did I not read about some special collars on this board a few weeks ago? Would those not provide the objective measurements of flow that could NOT be refuted? What ever happened to that?

Also, so what if MS causes CCSVI? That might actually be a GOOD thing. MS causes spasms, so my wife can get treated (baclofen) for spasms. So if MS causes CCSVI, then maybe even Medicaid (and quite possibly the NIH), would have to cover venoplasty as treatment for a symptom of MS!

Plethysmography collars! It would be wonderful if they provide an objective way to separate people with CCSVI from people without CCSVI. Research results will be more meaningful and less debatable. We only just heard about the collars, I don't suppose we'll have research results from studies using them for awhile now. Still seems brilliant to me.

The other objective measurement coming out of ISNVD was Dr. Hubbard's fMRI showing differences pre- and post-venography.

There seems to be a lot of confusion about which study the article is referencing. It is this one:

http://www.neurology.org/content/early/ ... 1.abstract

This is the BNAC ultrasound study completed last year - it has nothing to do with MRV. This data has already been presented in various forms, including the NMSS webcast last year. It seems it is just now being published in a journal.