Buffalo Study

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

Postby Sharon » Thu Feb 11, 2010 2:30 pm

Instead of starting a new thread, I will link an article from Medscape Neurology as it is reviewing the Buffalo press release.

http://www.medscape.com/viewarticle/716865
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Postby acol » Thu Feb 11, 2010 2:49 pm

Because the other thread has been closed I have copied this very recent post over here - hope you are reading this 'HappyPoet'?

Hi HappyPoet

Sorry to hear of your 'Good News and Bad News' situation.

I don't want to be seen as being intrusive (and I may have missed a previous post explaining...) but I was wondering what were the reasons for the surgeons being unable to operate? I understand entirely that you may not want to post publicly- and you can always tell me to mind my own business. However, if you feel able to post, these are my queries.

Firstly, where was the CCSVI identified - USA, Poland - Dr Simka or elsewhere?

Secondly, was it a definite no, no or was it more a question of being unable to operate at this point of time but the situation might change? As far as I am aware it is very unusual not to be able to correct such a problem - although I seem to recall reading about someone who had very wide flat veins which ideally required a stent but the width posed a logistical difficulty. I think that there are quite a few cases where it is considered too dangerous to use stents and the patient therefore has to confine theirselves to angioplasticy, even though the vein might reblock. But at least in these cases something can be done.
Nigel
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Postby HappyPoet » Thu Feb 11, 2010 4:18 pm

Hi Nigel,

At risk of us talking about the wrong topic in the wrong thread (boy is my MS-addled brain ever confused), I'll keep this short. (Feel free to send a PM if you have other questions.)

I have an inoperable intracranial venous malformation and a missing jugular.
My testing (MRV and transcranial color-flow Doppler ultrasound) was done in New York state.
Stents and balloon angioplasty are only done on extracranial problems in the neck/chest, not inside the brain.

~HP
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Postby sbr487 » Thu Feb 11, 2010 8:16 pm

Folks,

While our expectation levels were all different, Buffalo's study cannot be termed -ve (Even 100% would be less for critics)

They have put lot of hard work and done a good job.
So PLEASE PLEASE! donate what ever you can to next phase of Buffalo ...
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Postby Billmeik » Thu Feb 11, 2010 9:50 pm

I wonder if this means that Simka is wrong because he found ccsvi in 95% of 250 patients. Or maybe he has more sensitive diagnostic techniques?
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Postby marcstck » Thu Feb 11, 2010 11:59 pm

My take on all this, for whatever's worth...

The study results released today were really not surprising from a blinded study of CCSVI. The results previously found (upwards of 95% correlation between CCSVI and MS) were from completely unblinded studies, meaning that the researchers conducting the studies as well as the technicians doing imaging were aware of which subjects had MS and which didn't. Though I don't think any intentional bias was present, unintentional bias could very well have played a part, and results such as those reported are the very reason that scientific scrutiny demands blinded studies.

I find the results of the buffalo study very encouraging. They discovered a 2:1 ratio of CCSVI found in MS patients vs. healthy subjects. This is a very significant finding, and only seems dim in comparison to the hard to fathom universal correlation that was previously reported. The high level of MS misdiagnosis alone cast immediate doubt on such high figures of correlation, and led many researchers (such as those at the NIH) to look at Zamboni's reports with skepticism. These new numbers should lend some scientific credibility to CCSVI theory, and I think they'll spark further interest from the "mainstream" research community.

As for the rather high level of CCSVI found in healthy subjects, the reason for this is most likely that CNS venous anatomy has very rarely been studied in depth. There is no actual definition of what "normal" looks like in venous anatomy, unlike that of arterial anatomy, which has been scrutinized for decades.

Venous anatomy varies widely from patient to patient, and even within an individual patient. Very often, the venous structure in individual patients is different in their left and right appendages. This normally is not true of arterial anatomy, which shows much greater conformity.

What the buffalo study suggests is that CCSVI is a component of the wider MS picture, not the panacea that we'd hoped for. What we call multiple sclerosis is most likely a collection of several different diseases that share some common symptoms and markers. This explains the heterogeneity seem from patient to patient, as well as the difference in efficacy levels of current MS therapies from patient to patient. There is very likely a subset for whom CCSVI is THE single most important factor in their disease etiology. There is also very likely a cohort for whom CCSVI plays no role at all. That said, it's vital that CCSVI research continues vigorously and expeditiously.

Of course, we are only at the very beginning of research into an area that has been largely unexplored. I'm sure that many more surprises await.

For those of you who would like to read more of my blather, I'd posted a rather long article on the buffalo results in my blog:

http://www.wheelchairkamikaze.com/2010/ ... ealed.html

I hope my words have not upset anybody here, as that certainly is not my intention. One of the hard life lessons I've learned through the years is that when something seems too good to be true, it probably is. It sucks, but it is what it is...
Last edited by marcstck on Fri Feb 12, 2010 12:51 am, edited 1 time in total.
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Postby frodo » Fri Feb 12, 2010 12:05 am

Billmeik wrote:I wonder if this means that Simka is wrong because he found ccsvi in 95% of 250 patients. Or maybe he has more sensitive diagnostic techniques?

Not really. Simka found stenosis and venous problems in 95%, but, strictly speaking, he really never tested anybody for CCSVI because he is not following the Zamboni protocol. Maybe the stenosis he found would yield a negative result for CCSVI.
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Postby Zeureka » Fri Feb 12, 2010 2:09 am

frodo wrote:
Billmeik wrote:I wonder if this means that Simka is wrong because he found ccsvi in 95% of 250 patients. Or maybe he has more sensitive diagnostic techniques?

Not really. Simka found stenosis and venous problems in 95%, but, strictly speaking, he really never tested anybody for CCSVI because he is not following the Zamboni protocol. Maybe the stenosis he found would yield a negative result for CCSVI.

Also Zamboni found 95% in his smaller study. Would not think Simka is not using Zamboni's doppler technique. My doppler diagnosis (did it twice) was exactly the same with Simka and the Zamboni team - and how they applied the doppler was similar (supine and sitting position, breathing). I really fully believe Simka and Zamboni found this number in their lab with their doppler machine and technique.

It's just difficult to say what is CCSVI and what not. I think the definition would need to be refined...what were these "borderline cases" of Buffalo? Anyone knows?

If a pathlogic valve would be a borderline case for Zivadinov + only other stenosis with reflux CCSVI, well then indeed the Simka results would also be lower. As Simka found a lot of pathologic valve issues. These wrongly grown or functioning valves are still obstructing blood flow (not necessarily causing reflux), so one could class them as a borderline case of stenosis. But the Zamboni team still defined it in my report as "stenosis (due to valve blockage)" and confirmed to me it was indeed a problem for which an intervention, after angiography to check out details, could make sense.
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Postby Zeureka » Fri Feb 12, 2010 2:25 am

Also, would anyone know up to which point Buffalo checked the veins in the doppler? Only neck or also right down to the chest?

Was it an endo- and extra- cranical doppler? As with doppler problems of azygos veins cannot always be detected (at least not with the extra-cranical).

But anyway for the me Buffalo result of 55% is already showing a lot! And also the Neurologist argument which I saw was raised at a conference in Rome is now out of the way: A Neurologist argued it could not be right that Zamboni found 0% CCSVI in healthy subjects (as he would have seen stimes in scans on other checks that veinous issues were occuring). Indeed, now in a larger number of subjects they found a low percentage... I would be curious to know WHAT KIND OF CCSVI vein blockage they found for those healthy subjects though... anyone knows?

It would be good to see the Buffalo protocol/criteria applied in the study. Will that only be published with the final study paper? Or is the protocol already available anywhere?
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Postby frodo » Fri Feb 12, 2010 2:55 am

Zeureka wrote:It's just difficult to say what is CCSVI and what not. I think the definition would need to be refined...what were these "borderline cases" of Buffalo?


I think the definition is clear. CCSVI is a condition defined by two or more failures in the original Zamboni tests. If you have stenosis but only one failure you don't have CCSVI, even if you have a very bad reflux.
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Postby acol » Fri Feb 12, 2010 5:09 am

Hi marcstck

I think that your analysis hits the nail. I liked reading your blog. Very clear explanation, thank you.

HappyPoet

Thank you too. I hope that as medical science advances something can be done to address your CCSVI.
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