This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all,
Why are everyone trying to crack Zambonis study with comparison to Buffalo study, while never mentioning The Kuwait study. http://www.ccsvikuwait.com/Details.aspx?d=4

These other studies (Simka, Mamoon etc)need to surface on the debate arena, don't you think...

Best

Thank you for posting this, Zenja! Remarkable results, really.

I wish there was a bit more detail on the MS patients. I have wondered if the studies establish a criteria for a MS patient- i.e., clinical dx with an MRI that indicates lesions, etc., versus symptomatic dx. Just curious.

Thanks for posting!!!

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Three veins angioplastied.  One renewed life.  

Because people against CCSVI will follow the path of least resistance (just like blood through collateral veins).

BUFFALO is NOTHING like Dr. Zamboni's study. ALL Buffalo is doing is scanning with a doppler machine. It's not doing MRV, it's not doing Venography ... that's it ... doppler.


KUWAIT IS doing a study like Dr. Zamboni's and finding the same results (for the most part). They are doing the procedure, showing improvements in people and tracking it ...

So which are you going to follow if you're anti-CCSVI ... the one that shows 60% of patients have CCSVI (or whatever the number is now) ... or the one being done by a whole country that shows 96% of patients have CCSVI?



I had a talk with my mom the other night who works in a hospital (actually involved with drug companies - I don't like to admit it but what the hell) about CCSVI for the first time ... her first words after hearing about doctors being stopped from performing procedures ... drug company money influencing people. She said don't be surprised if drug companies try to find ways to treat the veins instead of surgeries (wasn't there some Canadian doctor who said the same thing?).

It can be even worse. Some people refers to a pseudo-study that Dr. Fredman made (Dr. Fredman is a neurologist that had never made a Doppler before).

Of course, he found nothing, but he published his results anyway.

I think it will be important in the future to have some guarantees about the quality of the doppler technician in the studies.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

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Lyon ... you find me a place willing to do venography on me ... I'm in.

I'm probably the healthiest person in terms of vascular health on this board ... considering I have all the exact opposite of those symptoms of those with CCSVI.

Until then it's not an accurate comparison. I think others of those with loved ones with CCSVI would be on board with this as well ... what's a little leg incision to prove CCSVI ... nothing to me and I'm sure a lot of other people.

I sort of agree with what you're saying ... but in a lot of ways don't.

Doppler is known not to be the best test. So don't quote 60% when we know that's false, and with venography it's been proven to be found in the upper 90%s.

OR

Sign those of us up for venography (invasive or not I'm in ... maybe Dr. Sclafani will do that?) and let us prove that CCSVI doesn't exist in the non-MS population.

You can't have your cake and eat it too ... I'm not specifically saying you Lyon ... I'm referring to neurologists (or others) who quote the 60% like it's the bible but don't mention all the other facts and numbers and then offhandedly dismiss CCSVI.

Lyon, twice in one day that I am going to agree with your posts- to a point.

We should have the same tests performed on both the MS-dx group and the control group. And in my opinion, that needs to be a venography.
There has been a lot of critique on the technique of the tests involved (i.e. results can be manipulated- intentinally or not- based on speed of the dye insertion, position of patient, etc.; I won't get into whether or not I feel these arguements have merit). If EVERYONE gets the venography, and stenosis is still dominant in MS patients over the control group, then we should be in a position to validate not only the findings, but the testing technique itself.

I am not convinced that the Doppler-only technique, albeit non-invasive, is accurate enough to serve as the sole testing protocol. Even so, I find it impressive that Buffalo found more MS patients indicative of CCSVI than in the control group with the Doppler alone- a fact that eludes some.

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Three veins angioplastied.  One renewed life.  

I could be wrong, but I think so far Buffalo is the only blinded study.

I was at BNAC in Buffalo last week and I had an MRV. I actually posted the result of my MRV on this board in an earlier thread. The reason why scientists will believe Buffalo's CTEVD study is that is is a blinded study with controls and so far none of the others are. I will try to post a link to my images from Buffalo here.

ozarkcanoer

Look at this thread :

http://www.thisisms.com/ftopict-11810.html

ozarkcanoer

Just looked at the Webcast from NMSS in Britain, and here the Kuwait study was brought up from the audience...the neuros on the panel were a bit boggled...didn't seem to know about that study at all. But they knew all about Buffalo...

ya I thought buffalo was mrv. In that zamboni talk in italy afew weeks ago he talked about how neuros think they can cut corners by using mrv and it is actually the worste way to do it. To me right now Buffalo is truly diluting this science with bad practice. Soon we will watch lots of economically challenged msers pay money to them for negatives that others would find.

Hmmm...

Right now, it seems to me that one of the main variable values (who does/doesn't have CCSVI) is not being rigorously defined, but yet that is the exact variable that people are using to draw conclusions. That variable cannot be different between studies this way, or else we have a very poorly defined study. Plus, it seems that by comparing Buffalo to any other study what we're ACTUALLY doing is addressing the hypothesis that we detected fewer cases of CCSVI in Buffalo than in other studies. Do we need to "prove" that? It seems like not only is this not interesting, it's pretty obvious.

Just my two cents.

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there is a lot of work now. zamboni 100, Simka 95, Kuwait 92?Jordan 88, some othere got 0% and buffalo 62%.

I find it interesting that all the low numbers came from arrogant white guys and the others came from more humble places. Looks to me like the more a place is influenced by neuros and feels superior the more they get low numbers because they are ok with doing it wrong.