Hamilton Conference Feb 7 .......Updated (Feb 22)

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

Postby Zeureka » Fri Feb 12, 2010 8:47 am

mshusband wrote:I know everyone is confused by the 62% found by the Buffalo study ... so let me try to do my EASY statistical analysis for you all (I was a math major in college so I can possibly explain some things)...

Right, and in the end those %ages are not really so important...if one gets tested and CCSVI is found. Of course FOR CREDIBILITY and to move things forward they are! But even with 62% things are now moving forward on research and opening doppler facilities + increased media interest.

That's what we wanted Hamilton and Buffalo to achieve and would say has been greatly achieved :D And we're not at the peak yet!
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Postby CureIous » Fri Feb 12, 2010 9:05 am

mshusband wrote:I know everyone is confused by the 62% found by the Buffalo study ... so let me try to do my EASY statistical analysis for you all (I was a math major in college so I can possibly explain some things).

Simka is treating MS patients with CDMS ... they know where their MS lesions are ... he has a better starting point to know WHERE to look. SO it IS possible he can find CCSVI in 95% of his patients.

Buffalo is treating CDMS, CIS, and healthy controls ... they have no idea where to look going in. People are at different stages of disease progress (and if CCSVI is related to disease progression - as has been implied by Zivadonov) then if more people EARLY in disease progression (as signaled by the RRMS group being SIGNIFICANLY higher in the Buffalo study) ... it would make it HARDER to find CCSVI in those patients as their stenosis might be (like RRMS) remitting from time to time - where later in a disease course it might be more like that all the time. SO he might have only found 62% to have definite CCSVI - in a blind shot. But likely a significantly higher number HAVE CCSVI and they just weren't able to LOOK, were using OLDER equipment, and WERE testing people relatively newer to the disease!

So don't be discouraged. The actual percent who have CCSVI is most likely SIGNIFICANTLY higher than the 62% reported ... but going in blind makes it harder to find.

Anyway, I know you all want answers ... but that should clear things up a bit. We were hoping for 90+% but that was really unrealistic.

Once they develop better equipment/testing/etc ... you'll see those numbers in the 90+% range ... mark my words. CCSVI just makes too much sense ...


That echoes my take on it to a tee, results are positive, the real numbers are higher, but won't be achieved until we get our equipment and training up to speed on a broad basis.

Well put, thanks!

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby SammyJo » Fri Feb 12, 2010 10:34 am

thisisalex:

here we go with dr Dake's presentation in Hamilton... with some BEAUUUUTIFUL shots in it
Michael Dake's talk http://snipurl.com/ucfr6

or try here: http://www.ms-mri.com/news.php


OK, the Talk links have been removed at ms-mri.com

I downloaded Dake's, and the direct link to Dake's is still working, anybody have links or downloaded Simka's and Zamboni's ?
Please PM me if you can email them to me - thanks!
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Postby Rokkit » Fri Feb 12, 2010 10:40 am

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Postby markus77 » Fri Feb 12, 2010 10:41 am

i think people are missing the fact that 100% of dr z's patients had full blown ms but quite a bit less than that from the buffalo study had full blown ms.......
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Postby thisisalex » Fri Feb 12, 2010 10:50 am

SammyJo wrote: anybody have links or downloaded Simka's and Zamboni's ?
Please PM me if you can email them to me - thanks!


SammyJo

here is my blog with direct links to the Hamilton presentations:
http://ccsvi.blog.hu/2010/02/12/diagnosztika_es_mutetek

(the first 3 links within the text... dont be afraid of the hungarian language :D )
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Postby SammyJo » Fri Feb 12, 2010 10:54 am

markus,
To your point, from Simka's slide (thks Rokkit), his finding agree with Zamboni's higher percentage. But it seems the type of stenosis (IJV, not azygous) is more similar to Dake's.

•about 250 MS patients examined
•venous abnormalities found in ~95%
•most common finding: pathologic valves or membranes in the internal jugular veins (IJV)
•membranes in the internal jugular veins (IJV)•majority of stenoses in the middle part of IJV seemed to be secondary to pathologic valves or to result from external compression
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Postby markus77 » Fri Feb 12, 2010 10:57 am

thanks for the detailed info sammyjo..........
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Postby Rokkit » Fri Feb 12, 2010 11:00 am

This azygous thing still remains such a freakin mystery.
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Postby SammyJo » Fri Feb 12, 2010 11:08 am

Thanks thisisalex - nice blog!

From Haacke's slide 15, he lists the value of proper doppler, then slide 16 'Added value from MRI' it says

'Flow calculation easily performed for all vessels throughout the neck'

This is just my ignorance, but I thought the MVR could NOT show blood flow, only the doppler.

Also, is the primary piece of missing info from the MRV info on reflux?
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Postby thisisalex » Fri Feb 12, 2010 11:59 am

SammyJo wrote:This is just my ignorance, but I thought the MVR could NOT show blood flow, only the doppler.
Also, is the primary piece of missing info from the MRV info on reflux?

SammyJo,

thank you... I have just added your TV interview and your site to my blog. you do a wonderful job to promote CCSVI :) thank you

MRV is capable of showing blood flow when used th right protocol. They must inject dye into your vein, and with a special function called "flow quantification" they can visualize how the dye travels through your vein. This is the most important thing to use when looking for narrowing according to the Haacke protocol
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Postby Cece » Fri Feb 12, 2010 3:40 pm

Rokkit wrote:This azygous thing still remains such a freakin mystery.


Where did Zamboni get his m.s. patients from? Were they mostly referred by Salvi? Then that's not a random sampling of m.s. patients. If Salvi was mostly referring people with heavy m.s., such as wheelchairs, then that could slant things so that more azygous stenoses were found, since the azygous seems to be involved in spinal lesions.

It could also be an Italian difference. Is it sunny there, do they eat the Mediterranean diet...or a lot of fat, like what's in the Americanized version of Italian food? Maybe there is some cultural element that would cause stenoses to be more likely in the azygous if you're Italian. Stenoses in the jugulars could have a different etiology than stenoses in the azygous. There is still so much we do not know.
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Postby Zeureka » Sat Feb 13, 2010 11:32 am

Excellent thinking Cece..think they were indeed referred to by Salvi - maybe some more advanced (simply for reason that they also wanted to help them!). Not a random MS group (with however clear exclusion criteria) as Buffalo.

Sorry, checked my statement above a bit: Zambonis "CCSVI in patients with MS"paper reveals he checked 65 with MS:
- 35 RR (with EDSS 0.5-2, with average 1.5) - disease duration average 6 years
- 20 secondary progressive (EDSS 3.5-6.5, average 5) - dda 13 years
- 10 primary progressive (EDSS average 3-6.5, average 4.3) - dda 10 years
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Postby Cece » Sat Feb 13, 2010 12:02 pm

Zeureka wrote:Sorry, checked my statement above a bit: Zambonis "CCSVI in patients with MS"paper reveals he checked 65 with MS:
- 35 RR (with EDSS 0.5-2, with average 1.5) - disease duration average 6 years
- 20 secondary progressive (EDSS 3.5-6.5, average 5) - dda 13 years
- 10 primary progressive (EDSS average 3-6.5, average 4.3) - dda 10 years


Thanks for checking...I should read through the original research again too. But if he was finding azygous lesions even on the RRs and Dake and Buffalo weren't, then either there's a difference in their abilites to find the stenosis or their definition of whether something is a stenosis or not, or there's a legitimate difference in the frequency of azygous stenoses in Italians vs. Americans. And if there is a legitimate difference, are Americans doing something in particular that increases the likelihood of upper internal jugular stenosis and/or are Italians doing something in particular that increases the likelihood of azygous stenosis? Or are Italians in some way genetically inclined not to get the upper internal jugular stenoses, etc.? Seriously, CCSVI raises so many questions, it's a sandbox for researchers right now. Most likely there's a difference in methods between Dake and Buffalo vs Zamboni, don't you think, that's causing the differences in location of stenoses? Not a difference between Italians vs Americans? For the joint endovascular treatment results, did each side do diagnoses on the same patients, so that they come with up consensus, or did Zamboni do the Italians and Buffalo the Americans? Depending on how it was conducted, it could shed some light on this.
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Postby Zeureka » Sat Feb 13, 2010 1:05 pm

Simka certainly did a mix of all (Poland, Slovakia, Russia, US, Canada, UK, Germany etc. sorry if forgot anyone :wink: - but true, less Italians), and his Hamilton presentation states most common were jugular valve or membrane problems.
But als Zamboni's paper states as for the jugular veins they were stenosed unilateraly or bilateraly in 59/65 patients (91%). And he in addition, also found an azygous vein problem in 86% of cases.
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