False Creek Centre in Canada RE-testing people.

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

Postby Johnson » Wed Dec 30, 2009 11:49 pm

Reasonable observations, Jugular, but I do recall that Zamboni's trial was blinded to a reasonable extent: 100-odd with MS, and 235-odd controls, some of whom had other neurological issues. No stenosis in the controls, and some 90% in MS folks, as I recall.

Like any profession, or occupation, radiology can be an art. I've had incompetent auto mechanics, dentists, and many incompetent doctors. I've also known a few artful ones. It doesn't surprise me that radiologists would be any different. Curiosity is not a learned capacity. Neither is finesse.

I think that if False Creek was really serious, they would drop $10,000, or whatever, on having a radiologist trained by Zamboni in Italy. They could make that back in 5 scans, or charge to train others. Until they do so, I'll keep my cash for Dr. Simka.
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Postby CureIous » Thu Dec 31, 2009 12:08 am

Johnson wrote: Curiosity is not a learned capacity. Neither is finesse.
NICE.
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 CureIous » Thu Dec 31, 2009 12:43 am

Jugular wrote:What, false readings from False Creek? We should have expected that!
Seriously, has anyone allowed for the possibility that Dr. Zamboni's study may have included false positives? In other words, the correlation may not be as "robust" as initially reported.
I also don't understand why imaging reflux and stenosis requires special training (indoctrination?) from Dr. Zamboni. Shouldn't it be obvious without having to squint or hold one's jaw right?
Straighten me out on this.


Lol@ your false double entendre.

There's always going to be possibilities in the medical field of false positives, and as marcstk has delineated before, people who were misdiagnosed for MS in the first place, muddying the scientific and statistical waters.

As to the problems with the imaging, part of it is our equipment here in the states, we need the stuff they have, we don't have it, at least not on a scale as in Europe. My thought is the profit motive. Since the government pays for a goodly number of services and equipment there, and funds so much of the research, there's incentive on all sides to produce bigger and better and more $$. Kind of like our jet fighters, good just aint good enough when it's on the taxpayer's dime. Or for a better example, motorized wheelchairs, subsidized by Medicare. We had a neighbor who had an unfortunate accident years ago, and was a quadraplegic. Oh boy you should see what those voice and mouth activated chairs run, paid for by the government since he's on permanent SS and Medicare. Even dinky parts are a ton of money. When one of the struts that holds the back of the seat up failed, in the middle of Magnolia, he was left by himself (his name was Jeff, and he would ride that thing all the way to Walmart with his kid boy in tow, really great guy), and his kid couldn't lift him upright, and the strut and it's piston driven mechanism, wouldn't have helped anyways to KEEP it up. Luckily my buddy has a machine shop, so he fixed it for free and we repaired the chair til he could get the new one. Gotta hand it to the paramedics though, AMR, since he was not necessarily hurt (but stuck laying flat on his wheelchair on the side of the road), they left him there to fend for himself. It was the most disgraceful and disgusting thing I've ever seen what they did just leaving him there, but I digress back to wherever I was, oh yeah, the ultrasound equipment.

I'm still not convinced that we even have the equipment on a large scale here in the states, that can adequately (and with enough sensitivity), detect reflux. My thought is that they are used to detecting arterial reflux which would be much more forceful and apparent, and the level of reflux we speak of here on the venous side, is MUCH more subtle. It's the subtlety that makes it difficult, not it's mere existence.

I was pondering tonight, if people who had strictly valve issues, and resultant reflux, would show any stenosis at all, for instance, lets say you have MS, you suspect CCSVI. You get MRV, it's negative. You then get on a plane, fly to Dr. Zamboni, and get only an ultrasound, and he finds refluxing in the veins, and a suspicious looking valve, or membrane, or whatever. Okay so now you are on the table, he lights up the venogram, confirms the valve issue, angioplasties the spot and sends you on your way. Granted that is a hypothetical situation, but lets say 20% of the people get negative MRV's, and have a strictly valvular issue, but can't get a proper scan, they would appear to any outsider, to be the exception to the rule, but in truth, have fallen through the cracks, they just don't know it yet. Obviously the medical field is not going to put all 20% on the op table and do a proper venogram in real time. So now what? Only option available to rule OUT CCSVI would be a properly conducted ultrasound, or a re-interpretation of the original MRV.

This is definitely not a one-size-fits-all approach.

Let me put it to you this way, if I thought my MS was very typical in presentation, and I had one scan by someone newly trained, and they ruled out stenosis and/or reflux, I'd want copious amounts of 2nd opinions on that before giving up, as I really do hope the neg's which have popped up so far (and it aint just false creek it's all over), will fall into the learning curve category and not dissuade people from pursuing this further, for their own sake.

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 nicko » Thu Dec 31, 2009 10:18 pm

Well all these false negatives aren't the best news.... But this early on i'm really thinking its people not being able to read them. I've read a few accounts of people sending their scans around and some Dr's can see stenosis and others don't. One in particular, the radiologist found nothing with either jugular. They sent the results to Dake and he found severe stenosis in both. I would be very curious to see the results if these negatives were sent to Zamboni or Dake.

Hey if these problems were easy to find, don't you think they would have found out the CCSVI correlation earlier?

But we can't deny that some people with MS do have CCSVI. The question is do all of them??.
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Postby Billmeik » Sat Jan 02, 2010 9:21 pm

the first time someone tried to replicate zamboni they got 10% success. This news spread across the web and ccsvi was quickly added to the long list of ms cures by quacks. It was only when buffalo and stanford replcated zambonis 100% success that it was seen that the work was real, and non-trivial to image. So now false creek at least is doing the right veins but often guys like Simka in poland find the stenosis by looking for collateral veins... that is, new ways the blood flows because of the blockage. This requires serious anatomy chops that I still doubt false creek has. I mean if it was easy anyone could do it. Still they're trying. I got an email from Simka the other day and he's going to Vancouver in Feb to train the UBC docs doing the study. This is great news. I wonder if false creek would pay him to drop by there too?
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Postby cheerleader » Sat Jan 02, 2010 9:31 pm

Billmeik wrote:the first time someone tried to replicate zamboni they got 10% success. This news spread across the web and ccsvi was quickly added to the long list of ms cures by quacks. It was only when buffalo and stanford replcated zambonis 100% success that it was seen that the work was real, and non-trivial to image. ?


Huh? references please. I don't remember ever reading any of this. I was writing about CCSVI last December, brought it to Stanford in February and no one was trying to replicate Dr. Zamboni's tests, to my knowledge.
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Postby Billmeik » Sat Jan 02, 2010 9:59 pm

it wasnt a formal study but it was the first number used by the us ms society I hear, say last spring.

When I first heard about ccsvi a few months ago, I started a thread on the harvard list looking for the loophole. This was the number that was trotted out to me and I quickly challenged it.

I think it's kind of a medical folk tale from last year...probably created when a quick check of the veins of some ms patients was done with no skill, to try to disprove ccsvi quickly..

The reason I bring it up is it shows how non-trivial the imaging is. If you dont know what you're doing you'll probably see about 10%
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Postby cheerleader » Sat Jan 02, 2010 10:22 pm

yeah...I don't think so. Marie and I were compiling every research paper/reference on CCSVI last year and posting it on the large CCSVI thread, and the MS societies didn't have any coverage until this fall after the CTV documentary. And that only came about because of our writing about CCSVI on here and Ashton Embry connecting me with Avis Favaro.

That's a myth that has no validity. Venous stenosis was showing up at Stanford in over 90% of the self-referred MS patients, and we'll get the numbers from the SUNY/Jacobs study in February. Dr. Simka was finding it in all the MS patients he tested, which is why he got permission from his government to treat in Poland.

I'm sorry, don't mean to be rude, but it's important to separate fact from fiction around here.
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Postby Billmeik » Sun Jan 03, 2010 8:05 am

I agree the 10% number is bogus but i really think false creek has good gear and ok techs, and they are so far getting what? 25%? By saying 'this is a trivial test and everyone should be able to do it' I think you are doing techs all over the world who can't find the blockages a disservice.

It's hard.

I mean within hours of hearing about ccsvi I had an old mri of my neck out and was looking at veins. There is nothing there. Is this because zamboni is wrong? Hope not. I think it's because I need good images done by people who know what they're doing.

Still I may go down to false creek this week...At least they're trying.
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Postby Sharon » Sun Jan 03, 2010 8:35 am

Billmeik wrote
I agree the 10% number is bogus


I might suggest you edit your post about the replicating research where you state as a matter of fact
the first time someone tried to replicate zamboni they got 10% success.


If you agree the 10% figure is bogus, then there is no reason to have it posted. I think this is how we get mis-information - someone is going to read 10% and post it on their blog which is read and then posted on another blog -- yada, yada ---

The imaging protocol is extremely important -- the pictures tell the story. You not only need a trained technician to read the images, you need trained technicians to run the software for the MRV and the ultrasound. The equipment is not specialized -- my MRI/MRV was on a 1.5 Tesla. By the time I went back for my two month follow-up, the radiology dept at Stanford had refined the testing protocol --- same with the ultrasound. Dake had a learning curve --- he will be able to teach and instruct to this curve just as Zamboni (with the Easote training) and Simka (with the UBC training) are now doing.
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Postby Alica » Sun Jan 03, 2010 9:24 am

Billmeik wrote: I got an email from Simka the other day and he's going to Vancouver in Feb to train the UBC docs doing the study.


Excellent news! How exciting! Thanks for sharing this awesome news with us.
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Postby Billmeik » Sun Jan 03, 2010 9:34 am

I agree the 10% number is bogus


I might suggest you edit your post about the replicating research where you state as a matter of fact



Interesting. When I said 'replicate' I wasn't talking about researchers, or a study, I was talking about finding ccsvi.

Im sorry, my statement stands. Let me amend to point out that it is strictly anecdotal. A medical folk tale. False creek's results however are not a folk tale, and I think we should ask: "what does it mean if they find nothing in the azygous vein also? "

It means this is hard medicine. Seeing stenosis is like seeing if a garden hose has gone flat in your back yard from an airplane.
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Postby Lyon » Sun Jan 03, 2010 11:21 am

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Last edited by Lyon on Mon Nov 21, 2011 9:03 pm, edited 1 time in total.
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Postby cheerleader » Sun Jan 03, 2010 12:05 pm

wow, Bob. You're absolutely right, as always!!!
At least it's in blue letters, not red (King James version)
I'll get right on it. But you're right, it's Sunday....our day of rest.
8O
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Postby Lyon » Sun Jan 03, 2010 12:06 pm

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