a reason for the discrepancies in % of MSers with CCSVI?

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

a reason for the discrepancies in % of MSers with CCSVI?

Postby MS_mama » Thu Feb 11, 2010 10:26 am

So we are getting 100% from Dr. Zamboni, and some 90 percent or so from Drs. Dake, Haacke, etc. and 55-60some depending how you figure it from the Buffalo study.

We have heard many times that these diagnostic tests are operator dependent--an MRV for example, is more subject to operator error than a CT, and as for a doppler, while it is the most essential test for diagnosis, it is also the most specific as regards operator skill.

I wonder if part of the discrepancies in number has to do with this factor? In other words, each person has their own protocol, therefore they are identifying different percentages of people with CCSVI?

In addition, the Buffalo study was much larger therefore I think it would be a lot easier for MS misdiagnoses to creep in. With Dr. Zamboni, each of his patients was given a thorough examination and CDMS diagnosis by Dr. Salvi. Plus his sample size was so small compared to Buffalo.

As far as the 20 some percent of control subjects who had CCSVI, IF (and this is a big IF) CCSVI is conclusively linked to MS, then its possible that MS is highly under-diagnosed in the general population. We know that people may have "silent" lesions and have been diagnosed with MS upon autopsy. Furthermore, in the Buffalo study I would bet that a lot of the MS subjects brought along family members to be included as controls. This would skew the control group towards having a higher likelihood of having MS somewhere down the line anyway, since many of them would be direct relatives of those with MS (I think the risk goes to 1 in 40 if you have a direct relative with MS?).

Ok, novel over--these are just some random thoughts as to how these numbers came about. Obviously we will be waiting for future studies to flesh things out more.
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Re: a reason for the discrepancies in % of MSers with CCSVI?

Postby Cece » Thu Feb 11, 2010 11:25 am

MS_mama wrote:Furthermore, in the Buffalo study I would bet that a lot of the MS subjects brought along family members to be included as controls.


Yes...I hope that when the full results are released in April that they address this. I would like to see the control group analyzed (those with close relatives with ms vs. those without) to see if more of the CCSVI cases were from those with close relatives with m.s.
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Postby Vonna » Thu Feb 11, 2010 11:58 am

Good points, I hadn't thought of the family members possibly being in the control group.
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Postby cah » Thu Feb 11, 2010 4:48 pm

Note that Dr. Zamboni examined 65 patients and 235 controls. So he examined even more controls than Buffalo did! It's really strange that his finding of CCSVI in controls were 0%.
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Postby ms2009 » Wed Feb 17, 2010 9:25 am

Greetings,
From a statistical point of view, there would be always different results for different samples depending on the sample size and the selection bias. However, averages should be in a certain confidence interval in order to be acclaimed.

For medical studies, 50% is a very good and significant results most of the time. For CCSVI, it might be a political issue but I have seen several medical studies with very small sample size and similar positive results and still doctors talk about them.

Take for example the study about the relation of breastfeeding and MS. The sample size was"30" (yes THIRTY). And still Neuros talk about this study and beleive somehow in the validity of the results because it has good theoretical background and it was processed formally in their academic review system (peer-blind-review and publication).

So keep the faith and look forward for better results. Neuro institutes are very rigid and they do not want to let go for a surgon to teach them how to treat something.

However, if patients push enough and continue pushing, they might tend to adopt CCSVI. The time is not on our side I know and for this case the best is to seek treatment overseas or somewhere else. I know it has a cost but what can we do !!

Patients should push on two ends: MS societies and Neuros. These two bodies are the front liners and the most rigid and pushing is very easy. Talk to people who donate (public awareness, social networking ...). Let them donate for CCSVI research and follow up with the societies that their money was really spent on CCSVI and not something that MS societies executives like.
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Postby chachacha » Wed Feb 17, 2010 10:03 am

ms2009 wrote:Patients should push on two ends: MS societies and Neuros. These two bodies are the front liners and the most rigid and pushing is very easy. Talk to people who donate (public awareness, social networking ...). Let them donate for CCSVI research and follow up with the societies that their money was really spent on CCSVI and not something that MS societies executives like.


I think a third option: follow the money trail.
The group who would benefit monetarily: Vascular Surgeons.

Even if only 55% of M.S. patients have CCSVI, that is still a large number of people that could have their lives improved by having surgery.
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Postby ms2009 » Wed Feb 17, 2010 10:13 am

chachacha wrote:
ms2009 wrote:Patients should push on two ends: MS societies and Neuros. These two bodies are the front liners and the most rigid and pushing is very easy. Talk to people who donate (public awareness, social networking ...). Let them donate for CCSVI research and follow up with the societies that their money was really spent on CCSVI and not something that MS societies executives like.


I think a third option: follow the money trail.
The group who would benefit monetarily: Vascular Surgeons.

Even if only 55% of M.S. patients have CCSVI, that is still a large number of people that could have their lives improved by having surgery.


I think doctors are not well into the money but they need money for their research. Money dealers are at the admin side rather.

However, people can still seek a surgery (if and only if they have all the medical support for it whether this support is from a surgeon or from a neuro). I do not advise anyone to go for a surgery without consulting enough experts in the medical field.
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Postby Cece » Wed Feb 17, 2010 12:43 pm

chachacha wrote:I think a third option: follow the money trail.
The group who would benefit monetarily: Vascular Surgeons.

Even if only 55% of M.S. patients have CCSVI, that is still a large number of people that could have their lives improved by having surgery.


Yes, not to mention the possibility of restenosis (in approximately 50% of people treated with angio) - so half of those patients will be back for a repeat surgery.

I would predict that vascular surgeons are going to be very, very busy over the next few years!!
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Postby frodo » Thu Feb 18, 2010 3:56 am

cah wrote:Note that Dr. Zamboni examined 65 patients and 235 controls. So he examined even more controls than Buffalo did! It's really strange that his finding of CCSVI in controls were 0%.

It seems that there were familiars of MS patients among the controls.
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Postby nicko » Thu Feb 18, 2010 2:55 pm

Zamboni and Simka both are around 95%, Drs. Dake, Haacke 90% now buffalo comes up with 55%.

Who are we to believe? Everyone seems to believe the buffalo 55%. Even Dr Embry goes solely off the buffalo numbers. But in my mind its 3 vs 1. I'm more likely to believe the 90-95% numbers. Buffalo could have missed alot with improper testing. I can see if one Dr is off, but Zamboni, Simka, Dake and Haacke all being wrong??? come on now...
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Not Surprised

Postby FlashHack » Thu Feb 18, 2010 4:47 pm

From the news releases from BNAC it appears that their study only involved using Doppler ultrasound to detect reflux in the IJVs. It sounds like they did not look at the azygos vein at all. In addition, the study was blinded, which means the ultrasound technician had no pre-conception as to the presence of venous malformations in any particular patient.

Contrast that with Zamboni, Simka, Dake, Haacke and others who already believe the equation MS=CCSVI and so they look a lot harder for venous malformations when an MS patient comes to them using both Doppler and MRV and looking at the azygos. It is not surprising that the blinded study has a lower percentage. In addition, those patients with Clinically Isolated Syndrome (only one MS like attack and no more) were lumped in with the MS group.

One other variable that was not discussed: what was the average age of the healthy controls (HCs) who were found to have CCSVI vs. those without? Were they all under 40? Could they merely be pre-MS? I wasn't diagnosed until I was 38.

For a blinded study attempting to relate a disease with no bright-line litmus test for diagnosis with a condition that is just as tough to detect, the BNAC results seem very compelling.
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Postby mshusband » Thu Feb 18, 2010 5:55 pm

Look ... I'm sort of getting a bit annoyed with the debate on here to some extent of who's "right", who's "not right" ... it's silly and you're all wearing yourself out.

Chalk it up to different testing methods, it being blinded (sure it's going to be easier to find issues when you know the person has issues when you start looking so you have a semi-good idea where to start your search), and any of the other things people have mentioned.

But this debate you are all doing ... with NO information is getting a bit out of control. It's in EVERY thread.

I don't say this to be mean ... I say this because you've lost focus. You've let numbers stop you from doing in the weeks leading up to the Buffalo study release ... that being GET THE WORD OUT - WRITE DOCTORS - TELL EVEYRONE AND THEIR MOTHER ABOUT CCSVI ...

WHY DID YOU STOP? BECAUSE YOU CAN'T AGREE ON WHY ONE DOCTORS NUMBERS ARE DIFFERENT THAN ANOTHER'S EVEN THOUGH YOU DON'T HAVE THE FULL BUFFALO RESULTS YET? You're arguing about information you don't even HAVE?

GO BACK TO GETTING THE WORD OUT ... FINDING DOCTORS WILLING TO HELP ... PUSHING FOR RESEARCH DOLLARS ... PUSHING DOCTORS ... NOT TAKING THIS SITTING DOWN ...

You'll all thank me and be better off.

Why do you think Obama is failing in the US? His message got muddled after he took over ... you guys are now allowing yourselves to have your message muddled. KEEP FIGHTING ... IF YOU BELIEVE IN CCSVI ... DON'T STOP SPREADING THE WORD!
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Postby ozarkcanoer » Thu Feb 18, 2010 5:58 pm

mshusband,

You are a breath of fresh air !

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Postby nicko » Thu Feb 18, 2010 6:13 pm

mshusband wrote:Look ... I'm sort of getting a bit annoyed with the debate on here to some extent of who's "right", who's "not right" ... it's silly and you're all wearing yourself out.

Chalk it up to different testing methods, it being blinded (sure it's going to be easier to find issues when you know the person has issues when you start looking so you have a semi-good idea where to start your search), and any of the other things people have mentioned.

But this debate you are all doing ... with NO information is getting a bit out of control. It's in EVERY thread.

I don't say this to be mean ... I say this because you've lost focus. You've let numbers stop you from doing in the weeks leading up to the Buffalo study release ... that being GET THE WORD OUT - WRITE DOCTORS - TELL EVEYRONE AND THEIR MOTHER ABOUT CCSVI ...

WHY DID YOU STOP? BECAUSE YOU CAN'T AGREE ON WHY ONE DOCTORS NUMBERS ARE DIFFERENT THAN ANOTHER'S EVEN THOUGH YOU DON'T HAVE THE FULL BUFFALO RESULTS YET? You're arguing about information you don't even HAVE?

GO BACK TO GETTING THE WORD OUT ... FINDING DOCTORS WILLING TO HELP ... PUSHING FOR RESEARCH DOLLARS ... PUSHING DOCTORS ... NOT TAKING THIS SITTING DOWN ...

You'll all thank me and be better off.

Why do you think Obama is failing in the US? His message got muddled after he took over ... you guys are now allowing yourselves to have your message muddled. KEEP FIGHTING ... IF YOU BELIEVE IN CCSVI ... DON'T STOP SPREADING THE WORD!


Easier said then done. Those 55% numbers are in everyone's head now, that's all they see. I had a visit with my neurologist today. My previous visit he seemed excited about the ccsvi and was watching it very closely. But today he basically said CCSVI is almost as common in healthy people as people with MS. Those healthy people have no problem living with CCSVI. It may not help people with ms, but it certainly isn't causing the MS. So we are continuing on the normal research course.

I personally believe CCSVI has something to do with MS, especially with the high numbers from other doctors. But when everyone automatically jumps on the buffo preliminary numbers its very discouraging.
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Postby MaggieMae » Fri Feb 19, 2010 6:56 am

I just read Dovechick's post about her daughter Ella's procedure in Poland. In her post she mentioned the following: "I got to talk to Dr Simka when Ella had returned to the ward and he said he had found a severe stenosis very high up in the Right Jugular right next to her jaw which could not be seen by the doppler exam. He suggested that the lowish results from the trials at Buffalo may be due to this problem. which he said was one of the reasons it was important to carry out the complete treatment rather than just the doppler exam to get a complete picture of CCSVI in MS."
I found this very interesting. Even though Buffalo supposedly followed Zamboni's protocol, there will most likely be much to be learned from the first 500 test subjects and the test procedures for the second 500 will be fine tuned.
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