yet again

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

yet again

Postby scorpion » Fri Feb 04, 2011 7:15 pm

I missed the release of this study! Now I know what has everyone hopping mad.

http://jnnp.bmj.com/content/early/2011/ ... 3.full.pdf
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Postby Rokkit » Fri Feb 04, 2011 7:42 pm

Yup. The German neuros couldn't find a venous obstruction with both hands and a flashlight.
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Postby Gordon » Fri Feb 04, 2011 11:24 pm

I am nearly symptom free after 6 months. Dang that placebo.... I think the only thing that was triple blinded in this study was the doctors, they are triple blinded
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Re: yet again

Postby frodo » Sat Feb 05, 2011 1:27 am

scorpion wrote:I missed the release of this study! Now I know what has everyone hopping mad.

http://jnnp.bmj.com/content/early/2011/ ... 3.full.pdf


Don't forget that in a blinded trial, a positive finding has more importance than a negative.

A single positive means that there is really something. A negative could just be that the doctors performing the tests didn't do something properly.

There has been by now several blinded trials showing CCSVI even in healthy people. This study should be just disregarded by the inconsistence with them.
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Postby Motiak » Sat Feb 05, 2011 5:26 am

Finding 0% pretty much says to me either a whole bunch of doctors are lying or they're doing it wrong. Based on all the pictures posted by doctors on this board of valid stenoses I'm inclined to say that these researchers did it wrong.
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Re: yet again

Postby scorpion » Sat Feb 05, 2011 7:08 am

frodo wrote:
scorpion wrote:I missed the release of this study! Now I know what has everyone hopping mad.

http://jnnp.bmj.com/content/early/2011/ ... 3.full.pdf


Don't forget that in a blinded trial, a positive finding has more importance than a negative.

A single positive means that there is really something. A negative could just be that the doctors performing the tests didn't do something properly.

There has been by now several blinded trials showing CCSVI even in healthy people. This study should be just disregarded by the inconsistence with them.[

The only study that needs to be disregarded is Zamboni's because so far his original study is the only one that found such a strong correlation between CCSVI and MS(maybe one other?). When Zamboni finally comes forward and admits this maybe we can finally get some real answers about whether the venous system plays any role in the development or progression of MS. Zamboni's study is the outlier not the one posted above yet the "CCSVI faithful" continue to hold his results a sacrosanct. For those of you who will "be hatin" me for this post please note I am NOT saying research into CCSVI should be discontinued only that the original hype around CCSVI should NOT drive expectations for future results of scientific trials.
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Postby Doodles » Sat Feb 05, 2011 7:26 am

I'm inclined to think that if Dr. Zamboni isn't on to something the neuros would not be so determined to prove him wrong. The vascular component of MS is, as I have said before, not a new idea. It has just been ignored in favour of pursuing an unproven, strictly autoimmune model.
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Postby gibbledygook » Sat Feb 05, 2011 7:41 am

I must say, having just come back from Edinburgh where I saw with my own two eyes my badly functioning valve and the blue and red blood flows close to this, I don't understand how none of the patients in this study had normal flow. the flow in both my veins was retrograde. Still as the "placebo" from stents was far more effective than the "placebo" of steroids I'm going to keep going back for angio. I must admit that I never knew that steroids were all just placebo! But given my experiences they must be as well.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby EJC » Sat Feb 05, 2011 8:25 am

If, as you say, there is absolutely no evidence of the connection. How is possible for Emma's eyesight to be sustantailly helped not only less double vision but to actually alter the prescription, all measurable improvements (noted in the thread about Emma's improvements).

We visited Emma's consultant opthalmologist only 4 weeks before she had the procedure, he stated the eyesight issues were directly related to Emma's MS and there was simply nothing he could do to help.

Emma's eyesight was significantly improved immediately after the procedure and 5 weeks on have remained at that level.

We visited an optician after the procedure to change Emma's glasses as her existing ones were way too strong.

The optician was astonished, took all the details he could and wrote to the surgeon. He'd never seen changes/Improvemnts of this nature in 30 years in practice.


You spend a great deal of time and effort trying to debunk the theory of CCSVI but never seem to volunteer any more plausible explanation as to what else could help MS.

After years of prescribing drugs to patients the nuero community is still non the wiser as to whats going on.

Rather than simply repeating the same circular arguments until you're blue in the face Scorpion, what is your theory of the causes of MS?

It's all well and good vehmently opposing something that is physically helping hundreds/thousands of pwMS if you have a better or more viable explanation.

If you don't have a better idea...

1. What are you actually doing here?
2. Why not put all this energy into actually helping to find something rather than knocking those that are trying to help.

I'm a healthy sceptic, however when I'm faced with substantial evidence (both medically via Emma's optician) and seeing her improve weekly with my own eyes. I can't help but belive that CCSVI and MS are irrevocably connected.

If you want to discuss causation - then that is simply further down the line.

What I understand and what I see every day is how this procedure has helped my partner and made her life immeasurably better.

On that basis, I couldn't really give a rats backside what you think, but it aggravates me that you use so much energy trying to debunk a subject on which you seem to have no better expanation of.

To say something is clearly wrong, firstly you have to understand the subject inside out and have a more plausible hypothesis.

I don't think you qualify for any of that.
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Postby Cece » Sat Feb 05, 2011 8:29 am

They measured the flow in the jugulars after 3 - 5 seconds of apnea. What effect would the breath-holding have on the flow? It's not quite Valsalva, as was mistakenly used in the Doepp study, but the German authors discuss the valve insufficiency of the other sort (when the valves allow blood to flow both ways, back toward the brain or out toward the heart; as opposed to in CCSVI, when the valves are fixed and not allow outward flow toward the heart) as if it's more relevant than it is.

They also twice mention that angioplasty 'as recommended by Zamboni and his team' had resulted in the two adverse outcomes at Stanford. This was significant enough to them to mention at the beginning and the end of their article, yet not significant enough to specify that these adverse outcomes both involved the use of stents, which has always been recommended against by Zamboni.

EJC, very well said.
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Postby cheerleader » Sat Feb 05, 2011 8:43 am

Cece wrote:They measured the flow in the jugulars after 3 - 5 seconds of apnea. What effect would the breath-holding have on the flow?

Quite a bit, actually. Good find, Cece. This is why the Zamboni doppler protocol measures using normal breaths, no valsalva or holding. I hope he writes a letter in response, as he did for the Doepp study.The neurologists continue to test for something they do not understand. Zamboni has offered to help them, as he has BNAC, Arizona doppler, Atlanta doppler and many others.

Jugular veins distend or expand after breath holding...this is why
Next, the examiner observes the rise and fall of the venous pressure during normal inspiration and expiration. Normally, the mean venous pressure falls during inspiration. It is especially important that the patient does not perform a Valsalva maneuver or hold his breath during this procedure.

http://www.ncbi.nlm.nih.gov/books/NBK300/

Cerebral blood flow increases after breath holding-which would affect transcranial dopplers-
http://www.ajnr.org/cgi/content/full/20/7/1233
Blood pressure increase after breath holding-
http://www.physoc.org/publications/proc ... 20543PS214
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Sat Feb 05, 2011 8:49 am

Here's the exact quote from this article:
Data were recorded during a period of 3 - 5 s of apnoea following normal exhalation. The probe was located in a longitudinal plane between vertebrae C6 and C7, which was maintained when participants changed to upright position.
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Postby cheerleader » Sat Feb 05, 2011 9:25 am

Cece wrote:Here's the exact quote from this article:
Data were recorded during a period of 3 - 5 s of apnoea following normal exhalation. The probe was located in a longitudinal plane between vertebrae C6 and C7, which was maintained when participants changed to upright position.


And again, another difference. In the Zamboni doppler protocol, during regular breathing, the wand follows the legnth of the jugular vein---the entire vessel is insonated at a 60% angle---in order to see the entirety of the vein, not one isolated spot.

http://www.fondazionehilarescere.org/pd ... 4-ANGY.pdf
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby patientx » Sat Feb 05, 2011 10:29 am

I don't know about the present study proving or disproving anything (no one study proves or disproves anything). But, if people are going to try to discredit these studies, I would suggest they read things a little more carefully.
Cece wrote:They measured the flow in the jugulars after 3 - 5 seconds of apnea. What effect would the breath-holding have on the flow? It's not quite Valsalva, as was mistakenly used in the Doepp study, but the German authors discuss the valve insufficiency of the other sort...


From "The value of cerebral Doppler venous haemodynamics in the assessment of multiple sclerosis," Zamboni, et al:
The physiologic direction of venous flow was assessed during a short period of apnea following a normal exhalation, as previously reported


The doctors who co-wrote the Doepp study were not "mistaken." They performed the Valsalva test in addition to Dr. Zamboni's other 5 tests, with the idea that maybe IJV insufficiency was more pronounced in MS patients (which they did not find).

Funny thing is, in his papers, Dr. Zamboni refers many times to studies done by the authors on the Doepp study (Valdueza, Schreiber, etc.). But when these doctors perform their own study, suddenly they don't know how to hold an ultrasound probe.
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Postby concerned » Sat Feb 05, 2011 10:34 am

patientx wrote:
The doctors who co-wrote the Doepp study were not "mistaken." They performed the Valsalva test in addition to Dr. Zamboni's other 5 tests, with the idea that maybe IJV insufficiency was more pronounced in MS patients (which they did not find).


You've explained this so many times I don't know how posters here can keep blatantly spreading misinformation about it.
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