'The Rorschach test of CCSVI research'

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

'The Rorschach test of CCSVI research'

Postby Cece » Tue Apr 19, 2011 8:38 am

http://www2.macleans.ca/2011/04/18/the- ... -research/

'The Rorschach test of CCSVI research
Experts and journalists are reading whatever they want into a new study examining CCSVI in MS patients'

Of course, the chicken-egg conundrum gives rise to endless speculation. For instance: If CCSVI is the result, rather than the cause of MS, then why did 22 per cent of the control group have it? The fact that the control group in the Zivadinov study included front-line relatives of MS patients raises another set of questions given genetic predisposition to the disease.

According to Denise M. on facebook, out of the 163 healthy controls, 48 of them were family members....
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Re: 'The Rorschach test of CCSVI research'

Postby MegansMom » Tue Apr 19, 2011 9:09 am

Cece wrote:http://www2.macleans.ca/2011/04/18/the-rorshach-test-of-ms-research/

'The Rorschach test of CCSVI research
Experts and journalists are reading whatever they want into a new study examining CCSVI in MS patients'

Of course, the chicken-egg conundrum gives rise to endless speculation. For instance: If CCSVI is the result, rather than the cause of MS, then why did 22 per cent of the control group have it? The fact that the control group in the Zivadinov study included front-line relatives of MS patients raises another set of questions given genetic predisposition to the disease.

According to Denise M. on facebook, out of the 163 healthy controls, 48 of them were family members....



Not only were there a significant number of relatives in the control group, it has also been agreed upon by many experts that the only true way to diagnose CCSVI are venogram or IVUS ( intravenous ultrasound).

They keep doing studies to prove something with inferior methods! So many studies have been done with dopplers and MRV where they "miss" some anomalies.

Several cases of pwMS had CCSVI that was missed in venograms and under treated have been reported by folks. Some findings of a completely missed anomaly found on subsequent procedures.

Let's get some solid studies done ONLY with extensive detailed venograms for diagnosis on the records guys!!!Oh and this time.....leave the blood relatives out of the control group!

Enough with these petty preventable arguments.....let's get REAL studies moving. Time is brain.
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Postby patientx » Tue Apr 19, 2011 9:56 am

From "Prevalence, sensitivity, and specificity of chronic cerebrospinal venous insufficiency in MS," Zivandinov, et al:

Table e-2 provides the CCSVI classifications for genetically related and unrelated HC. CCSVI classification was not related to genetic status (p=0.627).


Moreover, there was no CCSVI prevalence difference between genetically related and unrelated HC, which would argue against a genetic origin of the CCSVI hypothesis.


Also, see Sotiris' post here:
http://www.thisisms.com/ftopic-11463-da ... asc-0.html

MegansMom wrote:Not only were there a significant number of relatives in the control group, it has also been agreed upon by many experts that the only true way to diagnose CCSVI are venogram or IVUS ( intravenous ultrasound).

They keep doing studies to prove something with inferior methods!

One expert probably doesn't feel this way - Dr. Paolo Zamboni. He found ultrasound to be 100% sensitive and 100% specific for finding CCSVI in MS. Now, people are saying that ultrasound is an ineffective and flawed method for detecting CCSVI. If this is the case, then they are missing are unwilling to say the obvious implication - Dr. Zamboni's original studies on CCSVI were flawed.
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Postby fernando » Tue Apr 19, 2011 10:37 am

patientx wrote: If this is the case, then they are missing are unwilling to say the obvious implication - Dr. Zamboni's original studies on CCSVI were flawed.


Why flawed? Then all small studies are flawed.
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Postby codefellow » Tue Apr 19, 2011 10:40 am

If this is the case, then they are missing are unwilling to say the obvious implication - Dr. Zamboni's original studies on CCSVI were flawed.


His studies were PRELIMINARY. He said his findings need to be replicated.
Which, so far, has NOT happened EXACTLY. But this is what happens when you step outside the box. You have to look around a lot to figure out exactly where you are.
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Postby griff » Tue Apr 19, 2011 11:23 am

codefellow wrote:
If this is the case, then they are missing are unwilling to say the obvious implication - Dr. Zamboni's original studies on CCSVI were flawed.


It is hard to explain how CCSVI is related to MS symptoms when there are many with MS who apparently don't have CCSVI and many without neurological symptoms that do have CCSVI.

It is a question what we consider safe. It is true that CCSVI operations have not resulted in any deaths so far, but we see many complications, collapsed and fully occluded veins and worsening MS symptoms when the restenoses happens.
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Postby Cece » Tue Apr 19, 2011 11:49 am

griff wrote:It is hard to explain how CCSVI is related to MS symptoms when there are many with MS who apparently don't have CCSVI and many without neurological symptoms that do have CCSVI.

It is a question what we consider safe. It is true that CCSVI operations have not resulted in any deaths so far, but we see many complications, collapsed and fully occluded veins and worsening MS symptoms when the restenoses happens.

So many many's.....

I look forward to having actual numbers.

We need another safety study, Dr. Simka and Dr. Siskin, but at six months out instead of immediately post-procedure! Dr. Mehta too! He presented results at four months out. This next year, I think we'll get a better sense of the real numbers as studies began coming in.
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Postby 1eye » Tue Apr 19, 2011 12:53 pm

I think there may be a fundamental error in terminology at least, here. I think it is completely unsound to use for any logical construct, the idea that a person who has been determined to be suffering from the chronic cerebro spinal venous insufficiency syndrome can be described as healthy.

Perhaps people with demonstrable CCSVI are muddying very murky waters. Much as neurologists would love to be able to say CCSVI is a common characteristic of fully healthy people who need no medical assistance whatsoever, I think most sane individuals agree that is not the case.

So perhaps we should dispense with the whole 'CCSVI prevalence in MS' thing, defer that discussion for a day when cooler heads prevail, and just look at CCSVI as a disease in its own right, with real symptoms, systemic and localized, and real treatments, trying not to bring along the baggage of every complaint an 'MS' patient ever thought of, or an 'MS' specialist ever 'cured'.
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Postby frodo » Tue Apr 19, 2011 1:48 pm

patientx wrote:From "Prevalence, sensitivity, and specificity of chronic cerebrospinal venous insufficiency in MS," Zivandinov, et al:

Table e-2 provides the CCSVI classifications for genetically related and unrelated HC. CCSVI classification was not related to genetic status (p=0.627).


Moreover, there was no CCSVI prevalence difference between genetically related and unrelated HC, which would argue against a genetic origin of the CCSVI hypothesis.


Also, see Sotiris' post here:
http://www.thisisms.com/ftopic-11463-da ... asc-0.html

MegansMom wrote:Not only were there a significant number of relatives in the control group, it has also been agreed upon by many experts that the only true way to diagnose CCSVI are venogram or IVUS ( intravenous ultrasound).

They keep doing studies to prove something with inferior methods!

One expert probably doesn't feel this way - Dr. Paolo Zamboni. He found ultrasound to be 100% sensitive and 100% specific for finding CCSVI in MS. Now, people are saying that ultrasound is an ineffective and flawed method for detecting CCSVI. If this is the case, then they are missing are unwilling to say the obvious implication - Dr. Zamboni's original studies on CCSVI were flawed.


You've got a point there, but don't forget that 100% only applies to the Zamboni five-tests protocol. Most of the reports forget the intracranial doppler or the azigous tests.
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Postby Lyon » Tue Apr 19, 2011 3:32 pm

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Last edited by Lyon on Wed Jun 22, 2011 5:11 pm, edited 1 time in total.
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Postby Cece » Tue Apr 19, 2011 4:01 pm

1eye, my husband and I were talking about that recently, that if CCSVI is found in 8% of healthy controls, do those healthy controls have a greater incidence of weakness, tinnitus, fatigue, depression, migraines?

Some cases of CCSVI may be under the radar and don't cause much in the way of symptoms until MS hits. Other presentations (like mine, with severe bilateral jugular stenoses) may result in a high degree of hypoxia and therefore more symptoms before the MS kicks in.

We are just in the beginning of learning about CCSVI. We can't assume that healthy controls with CCSVI are unhealthy or that they're healthy or even that they don't have MS.
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Postby Lyon » Tue Apr 19, 2011 4:14 pm

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Last edited by Lyon on Wed Jun 22, 2011 5:11 pm, edited 1 time in total.
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Postby bluesky63 » Tue Apr 19, 2011 5:02 pm

Cece, you have an excellent point about other issues that the supposedly healthy people could be experiencing.

I have also given a great deal of thought to your experience with color and your description of not realizing how impaired you had been till it was improved.

You thought what you were seeing was "normal." Then the true "normal" was revealed and your previous impairment became clear.

As a relevant comparison, I had a congenital heart rhythm disturbance. I grew up never knowing the way I felt was not "normal." It became progressively worse and was finally diagnosed and ablated when I was an adult. After it was successfully identified and treated, I realized the difference between "normal" and "not normal."

So some of these supposedly normal people may not know that they could feel differently.
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Postby civickiller » Tue Apr 19, 2011 5:23 pm

i would want to see if this heathly control group with ccsvi develops any future neurological problems
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Postby patientx » Tue Apr 19, 2011 5:45 pm

fernando wrote:
patientx wrote: If this is the case, then they are missing are unwilling to say the obvious implication - Dr. Zamboni's original studies on CCSVI were flawed.


Why flawed? Then all small studies are flawed.

My only point was that if people are going to criticize the BNAC study because it used an ineffective method for detecting CCSVI, then Dr. Zamboni's original studies, on which BNAC and other studies were based, suffered from the same flaw.

codefellow wrote:His studies were PRELIMINARY. He said his findings need to be replicated.
Which, so far, has NOT happened EXACTLY. But this is what happens when you step outside the box. You have to look around a lot to figure out exactly where you are.

I completely agree. We have seen a few studies now trying to replicate Dr. Zamboni's ultrasound findings, with varying results. No, they were not catheter venography, but you have to start somewhere.

But it seems the argument is that, when these studies don't come up with a 100% correlation, they must be wrong. Before, the criticism of these studies was that the doctors did not know what they were doing, or that they were deliberately finding negative results. Now, since these don't apply to the BNAC doctors, the criticism is that the whole method is flawed.
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