AM I READING THIS CORRECTLY !!!

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

AM I READING THIS CORRECTLY !!!

Postby Gordon » Fri Jan 14, 2011 3:09 pm

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Postby MrSuccess » Fri Jan 14, 2011 3:56 pm

Gordon .... are some IR people not reporting that MRV's are of little use ?

And ...... I might add...... so-called healthy contols [ HC ]
in my opinion cannot be considered '' healthy '' if their neck veins are similar in size and shape as pwMS.

I would suggest pwMS - unknown to them - had vein strictures similar to the HC subjects .... before .... any MS symptoms started to show.....

Prove me wrong .

I fear for those that have no MS symptoms ..... but have suspected faulty neck veins .

Those people need to be treated NOW.



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Re: AM I READING THIS CORRECTLY !!!

Postby frodo » Fri Jan 14, 2011 3:57 pm

Gordon wrote:http://ccsvinews.blogspot.com/2011/01/new-mrv-study-from-buffalo.html


Yes, you are reading correctly. In this case they were using MRV instead of doppler, and it has been reported several times to have low sensitivity. This article only confirms this point.
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Thanks

Postby Gordon » Fri Jan 14, 2011 4:00 pm

I may be over reacting but this guy from U of B continues to disappoint me as one who has said "Hey we are on your side"

the gold standard test of catheter venography needs to be used.

G
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Postby concerned » Fri Jan 14, 2011 4:04 pm

MrSuccess wrote:And ...... I might add...... so-called healthy contols [ HC ]
in my opinion cannot be considered '' healthy '' if their neck veins are similar in size and shape as pwMS.


So if everybody's neck veins are similar in size and shape to pwMS, then no one can be considered healthy?
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Re: Thanks

Postby ikulo » Fri Jan 14, 2011 4:27 pm

Gordon wrote:I may be over reacting but this guy from U of B continues to disappoint me as one who has said "Hey we are on your side"


G


I never heard Zivadinov say he was on our "side." To me he always seemed to be one of the early researchers who wasn't too heavily involved in the political madness surrounding CCSVI. His findings are disappointing, but it's not him that's disappointing.
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Postby msrelly » Fri Jan 14, 2011 4:32 pm

you ARE reading it correctly, but Dr. Z isn't throwing the baby out with the bathwater. Everyone is in this for the long haul, including the researchers.

A scientific trial like this one invesitgated one specific thing: is there a difference in veins between HC and pwMS on MRV? It didn't say that CCSVI doesn't exist, or that this is the end of the road in their opinion. It just says that MRV didn't show a difference.

The conclusion went on to say :
Standardized guidelines are needed to define parameters for the presence of venous anomalies
I would guess that when the entire paper is available it will comment on the differences in opinion that exist when looking at MRVs or the difficulty in determining normal from abnormal in the venous system via MRV. It might also note that there are some differences of opinion as to what type of scanning protocol to follow and what kind of image interpretation to use (i.e. Haacke's flow quantif)

This was just ONE study among several that BNAC is doing which include Doppler U/S, venograms and treatment. Each study will contribute a puzzle piece in figuring out what CCSVI is, how best to diagnose it, how best to treat it, and what effects treatment will have short term and long term.

Please don't feel frustrated - this is just the beginning and it will help clarify direction for the future.

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Postby Cece » Fri Jan 14, 2011 4:52 pm

Was Zivadinov using the Haacke protocol MRV or regular MRV? I'm not sure when it talks about TRICKS and TOF sequences what that means.

I loved my Haacke protocol MRV, it showed up dramatic-looking stenoses in both jugulars. Would love to get another one at some time after treatment especially to check that my azygous holds up, with the flow information too.

I wouldn't read too much into this study, remember that at ECTRIMS 10 out of 14 studies came in showing an association between CCSVI and MS, that association is fairly well established at this point. In the Beirut study of late RR MSers, 12 out of 13 had CCSVI on catheter venogram (was there a control group to match against that? Can't remember everything, dangit.) So with this study not showing an association on MRV between MS and CCSVI, and the association already being well shown in other studies, it means it's the MRV that is the problem, IMO.
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Postby Zeureka » Fri Jan 14, 2011 4:56 pm

obviously the pharma will like to present that study isolated though. As they will enjoy presenting the study results financed by the Italian MS association (and from which Zamboni - at first envisaged to join the scientific committee - dropped out due to wrong measurement parameters).

The sad story is now that Zamboni misses funding for his own study that runs in parallel...2.5 million euros needed and they only got half a million until now from the Emilia-Romagna Region and Association Hilarescere.
http://www.youtube.com/watch?v=ISKMyc1jscU
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Postby Gordon » Fri Jan 14, 2011 5:35 pm

The problem I have is that this crap will be used by the governments especially in Alberta and Ontario to delay delay delay any additional work. In addition I think money was wasted in doing this that could have been put to further use.

He did say that he was on the CCSVI side when He presented in Calgary at the request of Direct MS.

His Big backing comes from ... guess who ... Teva and Biogen
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Postby Zeureka » Fri Jan 14, 2011 5:44 pm

Absolutely agree, their strategy is delay delay delay...
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Postby CureIous » Fri Jan 14, 2011 7:12 pm

Yes, less than stellar findings, which will be used by some to toss the baby out with the bathwater. MRV's are MRV's, just another tool, with it's own limitations. At first, the non-Zamboni-Doppler methods of screening were what was available at the time. We knew going into this, long ago, that without some type of transcranial doppler US readily available, with techs that knew what they were looking for, that the only avenues would be MRV, or the much ballyhooed "gold standard", which has it's own limitations.

While MRV may or may not show anything of diagnostic value, it is something that is readily available nationwide, presuming the proper Haacke/3.0 protocol is used, or even the Dake 1.5T protocol which I posted online some time ago. Sure, in a strictly scientific sense, we'd all love to just make an appt., wheel into the op room, get a "gold standard" venogram and be done with it.

Reality is not quite that simple, and while the above advice to "just go for the venogram" is spoken almost as an afterthought to the uninitiated both here and on FB, truth is, unless you have a bank account that can handle the above, or insurance that will just go for the venogram as a diagnostic tool, most people will be left out in the cold without some thing to put on the paperwork so insurance will pay for it in the first place.

Yes, some are able to just wheel right in, especially the cash paying customers, but lets talk rubber meets road not the smattering of cases here and there, most people don't pay cash, most won't find an IR to "just go for the venogram", and most won't have insurance that will readily pay for investigative invasive procedures.

So yes, two choices are available for screening, MRV, or US. The US may, or may not show anything, depending on the person, the location, the equipment, the operator etc etc. There's over 700,000 people with MS just in the US and Canada, and only so many experience Dr's to go around, and, when this eventually hits the national news cycle here, watch out. I don't look at MRV as the be-all-end-all of all things diagnostic, it has it's limitations, but it can be the invitation to the party, and one thing that can prop the door open to the venogram, it's just a tool and nothing else. There's an MRI machine on every corner practically, they aren't difficult to find. The Haacke protocol ( http://www.ms-mri.com/potential.php) isn't either. Nor the Dake protocol ( http://www.scribd.com/doc/26677469/Stan ... -1-5-Tesla) which can be used on the 1.5T which is the most common in America. No, it's not perfect, no, it's not going to satisfy all that the scientific community requires, not even close.

To try to equate this study to one's personal situation is comparing apples and oranges. So you may, or may not bring something away from this, but for the average patient who just wants to find out what is "going on in their head", this has much less impact, though it will be used far and wide to downplay CCSVI in MS, whatever, so the MRV's aren't all that great vs. normals. That writing was on the wall from Buffalo since last year, no big shocker at all.

Suddenly though, if you are staunchly anti-ccsvi, this will be the "proof in the pudding", and the MRV will become of such great weight, why, how come we didn't see before that all this nonsense about CCSVI was just that?

Then, when the DBPC trial results begin to come in from Stanford, we'll hear of "conflicting results from two universities" because the layperson reading about this for the first time won't know all the history behind it.

Make no mistake about it though, while last year could be considered the tip of the iceberg, this year will be a watershed year, both in accumulation of knowledge from various sources esp Dr. Sclafani etc etc, and in elevation of CCSVI to a point where it belongs, IMO, at the front of the line insofar as it relates to PWMS and their immediate needs. No, CCSVI and it's treatment is not going to fix all that ails us, and no, it's not going to be for everyone.

Interesting times getting more interestinger.
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 » Fri Jan 14, 2011 7:23 pm

Zeureka wrote:Absolutely agree, their strategy is delay delay delay...


CCSVI has some serious control issues right now, while control isn't always a bad thing, magicians "control" the crowd by distracting with one hand and using the other to perform the magic, if you steer the debate where you want it to go, then you control it. That may, or may not be a bad thing, depending on who is doing what, and WHY.

Always question motive, Dr's aren't god, they don't see everything, they don't know everything, and they can't predict the future, though some may attempt to steer this unwieldy bandwagon, it's really pointless, it's like trying to control the internet, good luck and pack a lunch.

I thank God for the GOOD Dr's that can't be bought, that have a patient oriented agenda vs a career path agenda, and for those like Dake that put his reputation mid-career on the line for us, took the heat, and is still swinging for the bleachers. Most of the good ones like Zamboni et al (pun intended) shun the limelight, though they could HAVE it on a moment's notice, make no mistake about it. They realize the distraction that creates.

Some MS patients have so little time to spare, they don't WANT their Dr's giving press conferences, though there is a time and place for that, I would think they would prefer them discovering as much as they can, as quickly as they can, as thoroughly as they can. Like Dr. S.
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 1eye » Fri Jan 14, 2011 11:07 pm

Interesting times getting more interestinger.


As long as they don't get curiouser. :)
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Postby bluesky63 » Sat Jan 15, 2011 1:51 pm

What it says to me is that this proves MRV is not a useful diagnostic tool for the malformations that cause the symptoms we care about.
Last edited by bluesky63 on Sat Jul 23, 2011 12:38 pm, edited 1 time in total.
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