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There's a great response to the Swedish & German "studies" located on "CCSVI Locator" & CCSVI Maryland on Facebook. (Not sure if you can get to it if you don't have a Facebook account.)

The person who wrote it is just one of us - an MSer - I won't try to paraphrase but anyone on FB can sign in to their account or their CCSVI Locator account to see this editorial.

http://www.facebook.com/notes/maryland- ... 6897900790

thnaks Selkie! or thanks

I think i read that Dr Sclafani was asked to respond to these studies and would do so by following proper communication protocol.
I wonder of the timeline? .. looking forward to what he has to say.

dreddk wrote:My wife tested postive for ccsvi using zamboni method but I'm starting to get nervous that only "zambonis" method works...any alternative method used to detect it results in zip...

I would worry about that too if not for the hundreds of venograms backing up Zamboni. I have a lot more faith in what is found during venograms than I do dopplers and MRIs.

The point we are missing is that the right protocol shows reflux and stenosis.
It is a different thing that one can say reflux is fine and stenosis is okay ...
I would not worry too much about that ...

sbr487 wrote:The point we are missing is that the right protocol shows reflux and stenosis.
It is a different thing that one can say reflux is fine and stenosis is okay ...
I would not worry too much about that ...

How do you know that this "protocol" is right protocol and some other "protocol" is wrong one? Who is supreme judge? Common sence and the Time....

Quidquod in oculto est in apricum proferet aetas ;)

For me, as hydraulic engeneer, reflux defined as dr. Zamboni and friends do is nonsense, just wrong interpretation of artifacts seen on bad tuned diagnostic machines.

Malden wrote:

sbr487 wrote:The point we are missing is that the right protocol shows reflux and stenosis.
It is a different thing that one can say reflux is fine and stenosis is okay ...
I would not worry too much about that ...

How do you know that this "protocol" is right protocol and some other "protocol" is wrong one? Who is supreme judge? Common sence and the Time....

Quidquod in oculto est in apricum proferet aetas ;)

For me, as hydraulic engeneer, reflux defined as dr. Zamboni and friends do is nonsense, just wrong interpretation of artifacts seen on bad tuned diagnostic machines.

time to move all hydraulics engineers to medical heamodynamics

sbr487 wrote:

Malden wrote:

sbr487 wrote:The point we are missing is that the right protocol shows reflux and stenosis.
It is a different thing that one can say reflux is fine and stenosis is okay ...
I would not worry too much about that ...

How do you know that this "protocol" is right protocol and some other "protocol" is wrong one? Who is supreme judge? Common sence and the Time....

Quidquod in oculto est in apricum proferet aetas ;)

For me, as hydraulic engeneer, reflux defined as dr. Zamboni and friends do is nonsense, just wrong interpretation of artifacts seen on bad tuned diagnostic machines.

time to move all hydraulics engineers to medical heamodynamics

You will be suprised, before I open my hairy mouth I study all I can find about hemodynamics, and found nothing unfamiliar to me. Good doctors are just as good as good engineers. Bad ones exists on both side... trust me .

Malden wrote:

sbr487 wrote:

Malden wrote:
How do you know that this "protocol" is right protocol and some other "protocol" is wrong one? Who is supreme judge? Common sence and the Time....

Quidquod in oculto est in apricum proferet aetas ;)

For me, as hydraulic engeneer, reflux defined as dr. Zamboni and friends do is nonsense, just wrong interpretation of artifacts seen on bad tuned diagnostic machines.

time to move all hydraulics engineers to medical heamodynamics

You will be suprised, before I open my hairy mouth I study all I can find about hemodynamics, and found nothing unfamiliar to me. Good doctors are just as good as good engineers. Bad ones exists on both side... trust me .

I am sure you are a genius in your field. But the fact is that I cannot trust a guy who tries to apply laws of flow dynamics applicable to industrial systems to human body. I would rather trust a medical doctor/researcher for that.

I will trust scientist who openly declares that he has not followed published protocols and explains why. I will not trust scientist says he does not find evidence of stenosis but is either not skilled to replicate published protocols or is designed not to replicate.

For me CCSVI makes sense and it explains much of what was missing.
For you, it does not make sense. That's not an issue as far as I am concerned and that surely is not my issue ...

of course, one thing I found very intriguing about what he said is that resistance to flow (due to stenosis, for example) can never create flow reflux.

After that I knew how much weightage I should be giving to posts ...

I find the discussion on diagnostic protocols fascinating.

Let's draw an analogy to the MRI. Different scans (T1, T2, FLAIR, etc.) will highlight different anomalies. Gadolinium will make active lesions visible. So if I get a MRI and the gadolinium was not used- does that mean I have no active lesions? No, it means the protocol was not followed that would have illustrated whether or not I had active lesions.

MS is very difficult to dx, as we all know, due to the general nature of most of the initial symptoms that can be attributed to a number of diseases. That's why most of us were dx'd based on more than just symptoms. If you had a MRI and a spinal tap (like I did) to get dx'd, that is probably far more accurate than someone dx'd based on presenting symptoms alone. As such, a Doppler and/or a MRV may add data, but without the proper venogram you may not see the full picture.

I agree with the posts that stress to follow Zamboni's protocols. If you follow the protocols and get varying results, that is one thing. But creating protocols on the fly will only net you variability by default.

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Lyon wrote:....
Personally, Ian, Dignan and I consider her a greek goddess. Well, it's taking a little effort to convince dignan but I'm sure he'll come around eventually.

May I join the club? Please, please, please....
I adore her to. (dispute my bad english).

Motiak wrote:I am blown away that Malden would post something that is contrary to the CCSVI theory. This never happens.

As far as the study goes, it could be a valid study that puts some doubt on the CCSVI theory. However, it's hard for me to truly believe that they checked correctly and found so few problems when the ms-inflicted population of kuwait is being checked and findings are so different. Maybe someday people will stop using MR as the basis for their study as well as that hasn't exactly proven to be the most effective screening process.

I do agree tthat venogram is the gold standard, but I am really having trouble with the fact that healthy subjects are showing these abnormalities too? Is it that MS just hasnt caught up yet???

Malden wrote:removed

No problem, man. Lesson learned - CCSVI is not for everyone

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