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Recent studies using colour-coded Doppler sonography showed that chronic impaired venous drainage from the central nervous system is almost exclusively found in multiple sclerosis (MS) patients.

This is something. Too bad they used mrv

cheerleader wrote:[...]thanks for the full paper, Sotiris. Even having spent time with Dr. Haacke discussing his protocol and time of flight 3D imaging and the reflux he is seeing, I am hard-pressed to find any problems with this study (except for the small sample size) I've forwarded to the good doctor and asked for his thoughts. I will post them if he OKs that.
[...]

cheer

Of interest is that they did not check the flow in the IJVs but only in the ICVs and the SS.

The flow quantification was done in two planes perpendicular to the internal cerebral veins and the straight sinus.

And of course they can check only in certain planes and not the whole veins as with ECD.

Cece wrote:Nope, of all the CCSVI images that have been shared here, none of them were pretty and flowing like that. Huh. (Jugular and Johnson,yup! That is more like it.)

* small sample size
* selection bias in the sample or conversely we have a selection bias here (only people with whom CCSVI theory resonates are pursuing this as aggressively as we are?)
* too much contrast used in the MRV?
* the Dutch are beautiful and have beautiful veins (credit to jugular)
* too low of a bar set for determing what's a stenosis, thus the control group numbers are higher than they should be
* lack of information on azygous due to its inability to be imaged
* Haacke protocol used?

*or the study was correct and CCSVI is as normal in the general popualtion as people with MS

scorpion wrote:

Cece wrote:Nope, of all the CCSVI images that have been shared here, none of them were pretty and flowing like that. Huh. (Jugular and Johnson,yup! That is more like it.)

* small sample size
* selection bias in the sample or conversely we have a selection bias here (only people with whom CCSVI theory resonates are pursuing this as aggressively as we are?)
* too much contrast used in the MRV?
* the Dutch are beautiful and have beautiful veins (credit to jugular)
* too low of a bar set for determing what's a stenosis, thus the control group numbers are higher than they should be
* lack of information on azygous due to its inability to be imaged
* Haacke protocol used?

*or the study was correct and CCSVI is as normal in the general popualtion as people with MS

You would think that the much larger study done by Buffalo would have had results that agreed with that. But that isn't really the case.

If you are seeking information on CCSVI then I advise you to disregard posts from Lyon and Malden.

Normal scientific investigation requires analysis and in business the 'devil's advocate' is an accepted approach. But these posters rubbish any supportive information concerning de-stenosis therapy.

Let me give one example:
2000 people with MS have received diagnosis and therapy with venoplasty. This has been stated by a neurologist in a web interview on http://www.komonews.com/home/video/106175483.html. This doctor is co-ordinating approval of venoplasty so should know what he is saying. I am confident of the 2000 figure but will not disclose information sources because this is a public website.

Of this 2000 what is the percentage where MS progression has continued. A high estimate could be 10%. Maybe in 200 people MS progression has continued as before. However at least 90% show stopping of MS progression or improvements, is my analysis.

Early adoptors take a risk in having an invasive selective venogram and balloon venoplasty when only 2000 others have done this already. The amount of risk you are prepared to take is personal.

Being an early adoptor of any novel medical therapy is not without risk, but MS progression was a greater risk for me after my analysis of the facts.

Finally I am prepared to post my name, professional experience and my story for all to see. Lyon and Malden hide behind the pen names, why ?

Kind regards to all seekers after facts,
MarkW

Sotiris wrote:

cheerleader wrote:[...]thanks for the full paper, Sotiris. Even having spent time with Dr. Haacke discussing his protocol and time of flight 3D imaging and the reflux he is seeing, I am hard-pressed to find any problems with this study (except for the small sample size) I've forwarded to the good doctor and asked for his thoughts. I will post them if he OKs that.
[...]

cheer

Of interest is that they did not check the flow in the IJVs but only in the ICVs and the SS.

The flow quantification was done in two planes perpendicular to the internal cerebral veins and the straight sinus.

And of course they can check only in certain planes and not the whole veins as with ECD.

That is odd.

The Haacke protocal calls for quantitative blood flow analysis of all the neck vessels at two levels - upper and lower. The neck vessels include LIJV, RIJV, LCCA, RCCA, LEJV, LEJV2, REJV, REJV2, LVV, RVV, LVA, RVA, LAJV, AND. RAJV. It charts flow rate, flow volume, velocity etc of these vessels at both locations. It then tabulates the flow volume and flow rate of the RIJV v. RCCA (RICA for lower) and LIJV v. LCCA (LICA for lower) at the same two levels.

The Dutch study looked at cerebral blood flow (apparentlty at one level only). Perhaps the study proceeded on the assumption that a vein stenosis in the neck is immaterial if it does not affect cerebral blood flow.

I really hope that Cheer hase some success in getting Haacke to comment on this study.

Firstly, unlike the authors, he has likely seen hundreds of MRV's of MS patients since a number of these imaging centers have been sending their MRV images and data to him for analysis. He can comment on whether the images seen in the study appear to be representative of the sort of venous malformations he typically sees.

Secondly, he can also comment on whether the flow analysis is meaningful.

MarkW wrote: Of this 2000 what is the percentage where MS progression has continued. A high estimate could be 10%. Maybe in 200 people MS progression has continued as before. However at least 90% show stopping of MS progression or improvements, is my analysis.

What is the basis for 10% being a high estimate? Or are you just making stuff up off the top of your head? An analysis means analyzing things, not taking shots in the dark.

MarkW wrote:If you are seeking information on CCSVI then I advise you to disregard posts from Lyon and Malden.

I for one appreciate Lyon and Maiden's posts (even Scorpion’s occasionally). They create a polemic that serves to deepen one's understanding. One has to weigh both pro and con arguments especially when deciding to undergo what is still an experimental procedure. In any case, they are nothing compared to the resistance that CCSVI faces from mainstream medicine so answers better be found to the points they raise. I have chosen to accept CCSVI as an article of science rather than faith.

concerned wrote:

MarkW wrote: Of this 2000 what is the percentage where MS progression has continued. A high estimate could be 10%. Maybe in 200 people MS progression has continued as before. However at least 90% show stopping of MS progression or improvements, is my analysis.

What is the basis for 10% being a high estimate? Or are you just making stuff up off the top of your head? An analysis means analyzing things, not taking shots in the dark.

As much as I think CCSVI is an important part of MS I have to agree with concerned. Unless you have some solid backing for that 10% I am really skeptical that that is anywhere close to correct.

Jugular wrote:I for one appreciate Lyon and Maiden's posts (even Scorpion’s occasionally). They create a polemic that serves to deepen one's understanding. One has to weigh both pro and con arguments especially when deciding to undergo what is still an experimental procedure.

Appreciated, and it really seems sensible that we should all want hope based on reasoned thinking rather than only wishful thinking?

jugular - what planet are you living on ? I would take MarkW's advice .

Have YOU actually read the content [ or actually LACK of
of content ] those - thankfully few - posters try to pass off
as intelligent skeptical questions ?

They make '' Moose '' .... look like a rocket scientist .

I would suggest you focus on the posts of the brighter lights
here at TIMS . A suggested list can be made available .

The older wiser TIMS posters have long ago washed their hands
free of these odious fools .



Mr. Success

How about talking about the study rather than your worthless opinions of the worth of other posters.

MrSuccess wrote:jugular - what planet are you living on ? I would take MarkW's advice .

Have YOU actually read the content [ or actually LACK of
of content ] those - thankfully few - posters try to pass off
as intelligent skeptical questions ?

They make '' Moose '' .... look like a rocket scientist .

I would suggest you focus on the posts of the brighter lights
here at TIMS . A suggested list can be made available .

The older wiser TIMS posters have long ago washed their hands
free of these odious fools .

So you REALLY are trying to appeal to someone while demeaning them? Somehow in practice you are always unable to muster the intelligence you attempt to portray.

If you want to find out about real peoples experiences on CCSVI then I advise that you disregard posts by Lyon, Malden. Concerned, Scorpion et al. These posters rubbish any supportive information concerning de-stenosis therapy. However they rarely present alternative information.

I gave one example, which was rubbished by the gang of nay-sayers:
- 2000 people with MS have received diagnosis and therapy with venoplasty.
The nay-sayers do not provide any information (its only 500 not 2000 for example).
Once I supported my case the nay-sayers do not ackowledge the accuracy of my information, just nay-say on something else.

So what is the percentage where MS progression has continued ??
Lets have an answer from the nay-sayers.

I repeat:
Early adoptors take a risk in having an invasive selective venogram and balloon venoplasty when only 2000 others have done this already. The amount of risk you are prepared to take is personal.
Being an early adoptor of any novel medical therapy is not without risk, but MS progression was a greater risk for me after my analysis of the facts. Its your personal decision to take without cast iron guarantees and at a cost around 10-15K USD.

I am a health professional and experienced business analyst and I am prepared to post my name, professional experience and my MS story for all to see. Lyon, Malden, Concerned, Scorpion et al hide behind their pen names, ask yourself why you should trust them

Kind regards to all seekers after facts,
and apologies to Motiak.

MarkW

MarkW wrote: I am a health professional and experienced business analyst and I am prepared to post my name, professional experience and my MS story for all to see. Lyon, Malden. Motiak, Concerned, Scorpion et al hide behind their pen names, ask yourself why you should trust them

"TRUST THEM?" Unlike you, I don't ask or expect anyone to trust me. I want them to make their own educated decision based on logic and not guesses from a non practicing pill pusher.

Regardless of non practicing status, at best it's intentionally misleading in this light for a pharmacist to try to pawn himself off with the term "health professional" as if everyone should bow to some special knowledge of MS you might have.

TRUTH...I'm a Gardener and I'm as much of an MS specialist as you are although I admittedly don't have a house full of pharma supplied nik naks.