Has anyone decided to "reschedule"?

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

Postby Johnson » Sat May 08, 2010 7:09 pm

Lyon wrote:...While it SEEMS certain that almost everyone with MS has CCSVI, it hasn't been shown that everyone in existence DOESN'T have CCSVI and that's kind of an important point everyone seems to ignore. An association with MS really isn't significant if EVERYONE has it.

But, not everyone in existence has CCSVI and MS. Sorry, I'm not understanding your point.

Johnson wrote:I get through the winter by knowing Spring will come.
Lyon wrote: A lot of people do, but after millions of years of observation it's almost certain that Spring will come.

Best not to take everything I write literally. The poet's hat is one that I often wear.
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Postby scorpion » Sat May 08, 2010 7:13 pm

The Buffalo study of 500 subjects showed that 56.4% of the MS patients imaged suffered from a narrowing of their extracranial veins (CCSVI). Why would it not be 100%? Hmmmmmmm
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Postby BELOU » Sat May 08, 2010 7:16 pm

scorpion,
yes you are right but from what I heard from Cheeleader and others, they (Buffalo) did not use the most sensitive method. I've seen on:

www.ccsvikuwait.com

that they found 96% of correlation and SImka is around 90%. Best thing to do? Get tested to see for yourself. Unfortunately here in eastern Canada we can't get test, they shutted down the facility.

Marc
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Postby Liber8 » Sat May 08, 2010 7:24 pm

Yes, Simka is over 90% Positive CCSVI for patients that have clinically diagnosed MS. This is from the clinic that just hit 300 treated, the most I know of.

So if you are betting the %, you would be a fool to cancel thinking you might not have it. Now if it has to do with finances or you want a gaurantee you will be jumping like a frog afterwords thats a whole nother question.
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Postby Lyon » Sat May 08, 2010 7:25 pm

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Postby scorpion » Sat May 08, 2010 7:31 pm

Hey Marc,
It makes no sense to me why Buffalo woould not have used the "best" method. Zamboni did not even have a problem with the method used by the Buffalo researchers. It seems the internet bloggers, including Cheer, have somehow figured out the best method for diagnosing CCSVI. It amazes me that for everyone on here that screams conspiracy no one pointed out the Kuwait site was created by the same people who are invested in the surgery.
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Postby Cece » Sat May 08, 2010 7:36 pm

Lyon wrote:While it SEEMS certain that almost everyone with MS has CCSVI, it hasn't been shown that everyone in existence DOESN'T have CCSVI and that's kind of an important point everyone seems to ignore.

What about what Dr. Sclafani said, back when you first posted in his thread, that he'd been doing this for thirty years and had seen a rather high number of patients (was it 3000 or so?) in that time and that he'd never seen the tortured malformations of CCSVI ever before now. His patients were typically young black victims of trauma, but that does not begin to explain why he had not seen this before.

I do think there's something to the idea that the white matter lesions that are considered okay if they're in the brains of sixty or seventy-year-olds, just not thirty-year-olds, could be the result of poor venous drainage over many years, not due to malformations such as what we have but just the weakening and wearing out of the body and in this case the veins as we age. I think there is a research study there and, thinking big, perhaps some treatment possibilities that would impact on senility and infirmity of old age.
scorpion wrote:It makes no sense to me why Buffalo woould not have used the "best" method.

Venogram is the gold standard in diagnosing CCSVI but it is invasive (minimally, albeit) and therefore the Buffalo researchers went with noninvasive methods.
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Postby Lyon » Sat May 08, 2010 7:47 pm

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Postby Cece » Sat May 08, 2010 7:55 pm

Lyon wrote:During those emergency, life threatening instances Dr Sclafani had better things on his mind, wasn't looking for CCSVI, and a for the biggest part of his career wasn't even aware of the concept of CCSVI.

Here is his list of what forms of CCSVI he's seen so far (I've got it saved to look up what the heck some of these things are):
drsclafani wrote:1. Anomalous confluens of jugular vein
2. Absent Jugular vein
3. annular stenoses
4. hypoplasia, isolated
5. hypoplasia, multiple tandem
6. duplications with stenosis
7. reversed valve
8. incomplete or fused valve leaflets
9. misplaced valve
10. false channels (may be incomplete jugular duplication)
11. webs
12. indentations/impressions
13. abnormal drainage of external and vertebral veins

Don't these seem like things he'd notice if he were trying to stick a catheter through them, even in a gunshot-wound scenario?
Lyon wrote: I have complete appreciation of the conundrum but regardless of everything else, how well rounded is the knowledge when the "gold standard" is being used to find CCSVI in people with MS and not in people without MS?

Well, to continue using Dr. Sclafani as the example, he's not just sitting around while he's waiting for his IRB to pass, he's still doing his regular job, which I believe involves going into people's veins on a daily basis. None of whom have M.S. Not sure if he's doing much work that involves being up in people's necks as opposed to other parts of the body, but generally I think it's safe to say that, even after having become familiar with diagnosing CCSVI in MSers, he has been in the veins in the neck area of other patients without MS and, if he'd seen this there, it would have made an impression on him.

:)
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Postby scorpion » Sat May 08, 2010 8:05 pm

If CCSVI causes the damage everyone is claiming it causes the method they used in the Buffalo study should have been sufficient.
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Postby Lyon » Sat May 08, 2010 8:13 pm

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Postby Cece » Sat May 08, 2010 8:21 pm

Lyon wrote:You actually make my best case in that people with MS are no different than the general population in that they also go to the emergency room when necessary.

Good point...if his patient population is young black males, their risk factors are lower than if they were white or female, but yeah, some small fraction of a percentage of the cases he's treated would be people with MS.

So wasn't it yesterday I asked you what the definition of 'never' was in the immune ablation case...now perhaps the question is if his 'never' is 100% never...I can still see how dramatic a change it would be from his daily work, in which perhaps he very very rarely sees a torturous jugular, to the parade of tortuosities that are the MS jugulars.
scorpion wrote:If CCSVI causes the damage everyone is claiming it causes the method they used in the Buffalo study should have been sufficient.

I guess the idea is that CCSVI causes the damage very slowly, so that it shows up generally after thirty years. It's not so completely blocked off that your head swells up and turns purple. The Buffalo study used an MRV and a transcranial ultrasound doppler. The question has been how valuable those are at diagnosing CCSVI and the answer may be not as good as we would like. There have been reports here of people saying their IR expected one thing because of what was on MRV but then when he went in for a venogram the doctor found something quite different...like expecting a stenosed right jugular but finding it's fine but the left is bad instead. It all just needs more research but the venogram being better than the MRV or doppler is why I weight the clinical findings (Dake, Simka, Kuwait, Sclafani) higher than the Buffalo findings...although the Buffalo findings are valuable too.
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Postby Lyon » Sat May 08, 2010 9:11 pm

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Postby Vhoenecke » Sat May 08, 2010 9:32 pm

Just back from Poland and I agree that if you have MS you have CCSVI the vascular surgeon agreed with my statement. They have done 300 and they do it properly unlike Buffalo. I feel amazing and would tell anyone don't put it off. Get a fundraiser going if you need it. People could donate airmiles to help you get your flight. Get them to donate to you instead of the MS Society to get you treated. Less people on social assistance helps the tax payers. Let's get treated and get well. All the best to everyone.

Val
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Postby Johnson » Sat May 08, 2010 10:06 pm

Lyon wrote:
Johnson wrote: Best not to take everything I write literally. The poet's hat is one that I often wear.
:lol: If you could only believe how much I honor that outlook. At work I'm viewed, by some pretty damned good bullshitters, as the king.

There is not a shred of doubt in my mind that bullshit is an art form, but there is a time and place for everything. There are people here, probably LOTS who are using what they read here to make HUGE life decisions.

The reason I'm such a dick is that you are far from the only person who uses artistic license in the CCSVI forums.

What makes you think that I don't, or wouldn't believe that you honour that outlook?

To bring things back into context:
Johnson wrote:
I get through the winter by knowing Spring will come.
Lyon wrote:
A lot of people do, but after millions of years of observation it's almost certain that Spring will come.

Best not to take everything I write literally. The poet's hat is one that I often wear.

Sorry Bob, I never said that you were a dick, but if you want to wear that hat, I suspect your reason is more mundane than a pursuit of excellence on fora. I wrote about winter and Spring, and a poetic hat, and you intimate that is going to make people take huge life decisions?

Okay then.
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