'The Rorschach test of CCSVI research'

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

Postby patientx » Tue Apr 19, 2011 5:05 pm

frodo wrote: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.

That's true on the BNAC study. They were unable to visualize the deep cerebral veins in some subjects (not all). Other ultrasound studies did not report any problems with imaging the deep cerebral veins.

As for the azygous, from what I understand, this cannot be imaged with ultrasound, and direct imaging of the azygous was not one of Zamboni's tests. I never really understood this, but apparently one (or more) of his 5 criteria indicates azygous drainage problems.
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Postby Cece » Tue Apr 19, 2011 5:18 pm

Different studies are coming in with different results. My notes from Robert Fox's (head of the Cleveland Clinic) interview at AAN:
if they're getting different results (one researcher finds 100% CCSVI, another finds none) they're doing the test differently

he had a poster and identified nine different parameters in doing an ultrasound based study

factors that can impact measurement of blood vessels in neck: how hard you push on transducer, hydration status of patient (dehydrated changes size and flow of jugular) compared same person hydrated and dehydrated significant changes; reflux by adjustment of knob on ultrasound can make a patient who has no reflux look like patient has reflux; critical issues to establish!

one challenge is that dr zamboni's description is not as complete as we need to replicate. which machines.

Need consensus group. So assessments are done the same way. Send same patients and healthy volunteers to different centers to see the cross comparability.

www.thisisms.com/ftopict-16225.html

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

Crazy circus world out there. Who knew. :)
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Postby marcstck » Tue Apr 19, 2011 8:50 pm

Just wanted to pipe in to say that, after having several phone conversations with her over the past year or so, I had the pleasure last weekof having lunch with the author of the Maclean's article linked to at the beginning of this thread. Anne Kingston is a lovely and supersharp woman, and our conversation was so stimulating and enjoyable that lunch lasted nearly 4 hours…
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Postby 1eye » Wed Apr 20, 2011 3:43 am

But does healthy CCSVI cause healthy 'MS'? Or merely healthy control?
"Try - Just A Little Bit Harder" - Janis Joplin
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Postby griff » Wed Apr 20, 2011 4:51 am

Cece wrote:
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.


Zivadinov's study indicates that only 56.1 percent of multiple sclerosis patients and 38.1 percent of patients with a condition known as clinically isolated syndrome (CIS), an individual's first neurological episode, had CCSVI and 22.7 percent of healthy controls involved in the study, also presented with CCSVI.

According to Zivadinov' interpretation these findings indicate that CCSVI does not have a primary role in causing multiple sclerosis. The study group consisted of 289 persons with multiple sclerosis, 163 healthy controls, 26 with OND and 21 with CIS.

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.


Yes, we do need them. However, I am just wondering how reliable these studies are when most are done through questioneries.

Just as an example, I read a few posts here about dr Sinan as well and I also talked to him. He told me that he has good results, 1-2% of restenoses, no scarring and no collapse of veins. It seemed nice until I read the posts of Winni and others that report something different. So, I am just wondering if these doctors are aware of these complications after procedure at all. Most of the patients are from overseas who pay a lot of money for the opearations and they most likely do not go back for check-ups. How can a doctor say that scarring does not happen if he most likely will never meet his patient again?

I have a great respect for those doctors who are doing these operations and try to help us, but I must agree with Rici that CCSVI operation is also a good business in certain countries and clinics try to maximalize their profits while treating us, so they do not give up part of their profit in order to do a better follow-up. I read some good ideas here in tims how it could be done in Poland and other countries who have lower cost base.

It seems a very brave statement to make that CCSVI operation is a very safe procedure when it seems there is no follow up on patients (only questionery in some cases). I do not know if the restenoses after operation might exacerbate the patient's MS or not. I also do not know how well our veins tolerate the stress caused by venoplasty. It seems to me that IRs did not expect as much problems with scarring and collapsed veins as we hear here.
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Postby 1eye » Wed Apr 20, 2011 5:49 am

If you have healthy CCSVI, maybe that means it is being caused by healthy 'MS' in relapse, which is the same as unhealthy 'MS' in remission!

Does CCSVI ever go into remission?
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Postby Cece » Wed Apr 20, 2011 7:02 am

griff, that is just one study, other studies have contradictory numbers. I am looking forward to when a consensus begins to emerge across many studies.
1eye wrote:But does healthy CCSVI cause healthy 'MS'? Or merely healthy control?

brilliant as usual :)
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Postby griff » Wed Apr 20, 2011 8:12 am

[quote="Cece"]griff, that is just one study, other studies have contradictory numbers. I am looking forward to when a consensus begins to emerge across many studies.

Thanks, Cece. I would be happy if you were right. As far as I know dr Zivadinov is among the first ones who started examining CCSVI and one of those he knows dr Zamboni for a few years. So, I would expect that he can do the examinations correctly based on Z's protocol.

It is hard to compare his studies to those done by venography- By venography you find more CCSVI in MS patients, but you do not do venography of healthy cohorts.
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Postby 1eye » Wed Apr 20, 2011 10:23 am

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.


The name tells all. If it were sufficient, you would not be thought to have an insufficiency.

That just makes 'healthy controls' all that much more elusive. Many diseases are endemic, and simmer in the population as a whole, asymptomatic, without sending anybody to emerg. A lot of Americans are obese as well. CCSVI is probably asymptomatic until older age in many people, and my opinion is we will come to think of it as another disease of aging, whose origin is shrouded because it never affected the species' ability to reproduce.
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Postby eric593 » Wed Apr 20, 2011 10:41 am

griff wrote:It is hard to compare his studies to those done by venography- By venography you find more CCSVI in MS patients, but you do not do venography of healthy cohorts.


At least one of the MS Society's studies in Canada IS doing catheter venography on healthy cohorts too. We will eventually have this answer too.
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Postby bluesky63 » Wed Apr 20, 2011 10:45 am

Marc, you are inspiring me to pipe in and add my own brush with fame relating to this article. The technician doing the doppler in the accompanying photo is the very same tech who did *my* diagnostic doppler. I would know those hands anywhere.

She was also delightful, but my doppler took far less than four hours (although my commute time from Georgetown may have taken that long).

I thought this was one of the best pieces I've seen. The writing was excellent. Anyone who kicks off quoting Fitzgerald gets an A+ from me. :-)
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