This Is MS Multiple Sclerosis Community: Knowledge & Support

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I didn't see this mentioned on here, interesting how they are asking people to return to do the azygos vein, and more importantly than that, they had a few negatives while following the Zamboni protocol to a tee.

Here's the Facebook page for them where I saw the news item.
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Besides Buffalo of course, this is interesting to see how other clinics and patients are coping with the testing, and not only that, the difficulty in detecting reflux and/or stenosis.

It's going to be a long road, with intermittent beams of light coming through every now and then.

Mark.

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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

I'm sure that there will be clinics that think they are following the right protocol for testing when they actually aren't. Second would to read the results properly. I'm sure this is a learning curve for some places. If I would get tested I would want to know it is a place that has been able to already detect CCSVI.

They didn't follow Zamboni's protocol to a tee cuz they're only now going to start test of the azygos veins.

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22 yr old male located in the caribbean. Suffering with MS like symptoms from early 2008 with multiple relapses under my belt with optic neuritis. Not dx'd as yet however. Hope is to ultimately be tested for CCSVI

Now THAT'S a good point nice catch.

Mark.

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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

Maybe zamboni's protocol won't find 100% of the problems either?? or maybe there's a disease that acts like MS, but is really auto-immune? Just all so new.

I would think anyone who has been scanned and has been told there was no problems should get a second opinion. Especially this early on in the game.

But its very nice to hear that they are calling people back to check all the veins. I imagine it would be a pretty hard thing to take with all this excitement that you don't have any problems with your veins.

I am new to this Forum but very experienced with MS. I was DX'd in 82. I am particularly interested in this CCSVI finding because of some of the atypical symptoms I have had over the years. Many thanks to everyone here for sharing their information and links to info.

Chris

Conisidering the number of negatives that are piling up, not just at False Creek, heck yeah. Don't toss those MRV's away just yet. Reflux reflux reflux ultrasound ultrasound ultrasound.... Can almost hear the chanting. We don't just need visionary surgeons, we need the same for the forward thinking sonographers, to get their 100 "normals" done first, heck I'd settle for 50 at this point.

Just call the people that went there "testing pioneers" in their own rite.

Mark

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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

You know on a side note here... I had an MRI this evening and asked the tech if they performed MRV's at this location he said yes but only of the brain. SO they aren't used to looking in the neck and his auto response when I asked about the test was, "but you have MS" like this sort of test wouldn't apply to you... I filled him in on the news break. he was kinda excited by the idea so I know these guys wouldn't mind learning how to look for things while testing us

I also believe I heard the doppler ultra sound Zamboni used was a little different so I wouldn't be surprised if they have to have Dr. Zamboni show them what/how to look for these properly! Makes sense to me that they'd have the man do it himself first to show them. I asked my GP to order the test and she even said she wouldn't send me to someone who didn't know how to look for this properly... hmmm interesting

Also a little off topic but maybe not... I wonder if the circulatory reflux here can cause trouble with the vagus nerve and or cause trouble with acid reflux... I mean this is all in the neck and I'm having trouble with these now. The vagus part has been for a long time and now the acid reflux is fairly new... I just wonder how these things may correlate... Anyone else note issues like these and does anyone know if there could be a correlation?

According to the article "the clinic has so far imaged eight patients" and it seems that some of them have normal veins. Even if they were only 2 the percentage would be 25%, i.e. much bigger than the expected <10% (the sample size is however very small to reject recent findings).
However, imaging techniques cannot be consistent with an echo-Doppler protocol. And even if they also used an echo-Doppler (which is not mentioned), there is a good chance they don't have the knowhow. According to Zamboni, one needs about 3 days to learn the diagnostic procedure.

I like how they are trying to get it right. They seem to want to find this reflux. Other places would like to prove it wrong. Way to go False Creek.

Totally agree.

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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

Yeah, small statistical samples aren't of much use in science as a whole. What concerns me, is that the number is so high, even with the level of knowledge that they have already. One would expect the opposite, whereas they find 100%, or 90%, which is then rejected as improbable, not the other way around. Ultrasound is definitely the weak link in the chain here, as it has always been. If done correctly, they can even tell where the stenosis is located!
I'm more concerned about the MRV not finding the stenosis, which does NOT mean it is not there, just that it is not seen.

This has been the experience so far for many people who've had MRV's, so now what? Since some present with valve issues, and little to no stenosis (but reflux that is readily detected if tested properly), and a whole host of other scenarios, then the main thing, to me, right now, is to assuage those with negatives, that all is not lost, and to the untested, of what to expect when going in for these tests, realistically.

Forewarned is forearmed as the saying goes...

Mark

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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

I found my stenosis on one of my regular MRI's from 2008. The stenosis was up high enough to be visible, along with collaterals. http://www.thisisms.com/ftopic-7822-120.html



Good work, we need to stimulate interest from the medical community at every opportunity. ESPECIALLY the radiology guys.



Yes, they have better equimpment, more sensitive than what's normally available here, and know exactly how to use it properly. I think your GP is smart, she's saving you the trouble, for right now. If I couldn't get it done right at Stanford, yet ended up with 4 stents (and I reviewed the Ultrasound 5 times already, there is NOTHING there that is remarkable), then extrapolating out to the medical community at large, and their capabilities, doesn't take much imagination...
Getting people off to Italy to get trained is a very good start for some centers. We need more more more!



This is interesting, as I would experience swallowing difficulties sometimes, (not since the operation though), I wonder if that was a vagal type reflux, like stuff would just get stuck, liquid, food, whatever, not choking, just couldn't get anything to do what it would normally do without thinking about it. Even then, sometimes would just have to start from scratch, use your imagination lol.

I like what False Creek is doing, just to reiterate, going out on a limb like this is opening the door up to get criticized from ALL sides.

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

False Creek does both the Doppler and the MRV, but I don't think they do the echo-Doppler Zamboni uses. They have done many more than eight scans to-date because that was the number they gave me several weeks ago.

First, we shouldn't be surprised that other facilities are taking time to get up to speed with identifying a totally new phenomenon. However, it is possible that Zamboni's percentage is inflated relative to the general population of people with MS. Perhaps people are getting scanned at False Creek who have less of a confirmed diagnosis? Perhaps not ALL people with MS will have any constriction in their veins. Finally, my doctor said something refreshing when I told him about False Creek's negative scans: "Perhaps they just can't find anything YET."

Good to be an optimist these days!

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

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.