This Is MS Multiple Sclerosis Community: Knowledge & Support

That anybody can buy space in a journal comes as no surprise. That they are not competent to diagnose CCSVI also comes as no surprise. That even peer review can miss a dog sometimes, same. I'd bet most Neurologists care about truth and about disinformation.

The real peer review comes from the readers. That includes you and I. Depending how credible and readable they/we are it will also include people who write to the editors of the journal. If the editors care about their Journal's reputation, the editors will review them very carefully, because their reputation and ultimately livelihood depends upon that.

But don't forget even peer review does not force a thing which is false to be true, or vice versa.

Would make a funny parody, though. Full page National Enquirer story. Interventional Radiologist Says Alien Neurologists Changed My Arteries Into Veins Film at 11.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I have a question -

Dr. Zamboni et al believe that CCSVI is related to MS
Some scientists (like the authors of paper above) dont think so

Both groups believe they used the right protocol in their study.
Assuming this is true (that they used unbiased protocol)
Now who is going to arbitrate as to who is correct?
I think it is here patients opinion will come into play ...

I find it hard to believe that BNAC can find abnormalities in like 20-25% of healthy controls and these guys couldn't find abnormalities in 2% of the MS patients that they tested.

this is the German study we've been referring to on here for awhile, now it's translated and available in the Anals of Neurology....
http://www.thisisms.com/ftopict-10025-g ... csvi+study

some good discussion on the topic linked above....and I got shot down in it for jumping to conclusions (moi??)
enjoy--
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Good observation. This study manages to disagree with Zamboni and Zivadinov about MS patients while managing to agree with Zamboni (and so not Ziv) about normals.

Without actually standardising the testing no-one is going to be able to prove anything with this sort of study. Each study is just going to come up with different results.

Also failure to find anything can as easily be interpreted as operator error as actual proof of no CCSVI. It's the old 'absence of proof is not proof of absence' thing.

The only way any of these studies will be able to show anything worthwhile is if all the technicians are trained by Zamboni.

This stands out to me. Even with what I have to assume were inadequte imaging attempts, they did still find one case of CCSVI...in a MSer, not a control.


I'm sorry, what??? The results from the University of Buffalo were statistically significant for a dramatic association between CCSVI and people with MS. 60% to 20-something%. This is conclusive of the association.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Could they not just have Dr. Zamboni and a few other doctors scan a variety of healthy and MS patients and compare results? Then unbiased proof is available.

My bigesst worry is that the protocol and venography are considered correct by the proponents of CCSVI because they can almost always successfully find CCSVI. What if they are flawed because they create the artifact that is interpreted as CCSVI? For example, what if lying in a certain position naturally caused veins to collapse and thus appear stenosed?

It does not seem likely, since that should affect MS and Non MS test subjects equally, but good science should encourage the use and comparison of different techniques and application of different points of view. More info and research is a good thing as long as it does not shut of the inquirly.

Why is it that in online postings by individuals diagnosed with MS RR SPMS AND SOME PPMS, AND with varying levels of disability-some with considerable disability ,have improved or normal mobility after receiving the angioplasty? You can't go from being unable to walk to walking normally for no reason.

in poland now where the ultrsound and mri didnt show much. the venography showed a stenosis bad enough that they wanted to stent but we weren't prepared for it mentally. Just an example of what it takes to find this correctly.

in poland now where the ultrsound and mri didnt show much. the venography showed a stenosis bad enough that they wanted to stent but we weren't prepared for it mentally. Just an example of what it takes to find this correctly.

Some questions and comments about this study:

Were any interventional radiologists or vascular surgeons consulted or supervising the procedures. Who interpreted the results?

There are obvious problems with this study if interventional radiologists or vascular specialists were not consulted. Neurologists would have clearly been working outside their areas of expertise, which raises ethical issues. That is not to say neurologists should not be involved in CCSVI studies. Surely the best outcome would be if all specialisations worked together. Now that would be a novel approach!

Methods are given in detail for the purpose of reproducibility. Zamboni’s study design was criticised. This study can and should also be criticised for not following research protocols.

One interpretation of these results is that they show extreme lack of expertise in the area of CCSVI identification.

I'm glad I never have to go to that hospital in England. At least this supports the view that if someone has venous insufficiency, it should be "treated" as separate condition from MS.

I am very angry right now at the medical community. They have been prodded to study the vascular links with MS for 30 years and refused because it didn't fit the paradigm which sees neurologists treating MS patients with an endless cycle of pity, questionable drugs and excuses.

Even if CCSVI proves not to be the cure for MS, the fact that there is at least some clinical benefit to this procedure is absolutely clear, so the FOAD attitude from the leadership within the neurology community (and the MS Societies themselves no less) is nothing short of [ ]. The parliament of Canada asked neurologists to put aside their egos tonight - which is about as harsh a comment a professional community can have directed at it in that house this early in the game. The resistance to CCSVI in MS is far from normal, and I'm glad Parliament has recognized this.

Even the good neurologists with that community which are open to the possibility of CCSVI treatment as beneficial are maligned by people like Dr. Freedman in Canada and his counterpart in the US. The double standards are cruel, twisted and abhorrent. Over 1000 people have been treated. In Bulgaria, scores dropped by an average of 1.5 points following treatent. Any other treatment which showed the promise of CCSVI, for any other condition, would simply be accepted as the new norm and treatment trials to maximize the effectiveness of the procedure would be fast tracked - continued studies into academic links between CCSVI and MS would not be continually repeated. So who is standing in the way?

I believe the actions of anyone standing in the way are punishable; and I hope organizations responsible are forced to rid themselves of this systemic cruelty and discrimination. There is a point at which you must recognize the clear benefits, and that point is past.

Those who stand in the way of a patient's right to chose the treatment, by preventing a willing and trained doctor from performing diagnosis and treatment of CCSVI in MS, should be liable for disease progression and suffering from the day they stand in the way in respect of that patient.

(I know I am ranting to the converted, but thank you for being an audience to my displeasure - maybe now I can get some sleep.)

OK. So I've read the whole paper. Many times. It's long, and very technical and I am BY NO MEANS a sonographer. But I did notice some discrepancies with Dr. Zamboni's studies, and I'd like to point them out.

This group tested internal jugular vein valve incompetence using valsalva manuever. Dr. Zamboni has discussed this often...


Here's the paper:


This isn't the same....Dr. Zamboni had patients breath normally, not valsalva, and he scanned the ENTIRE IJV.
Dr. Zamboni didn't measure IJV valve incompetence, because that isn't what CCSVI is about.



In this study, they measured at the apex of blood flow in two specific locations....Dr. Zamboni measured over the course of the entire IJV . It's like they took the transducer and held it in one spot- the apex of blood flow. That's not what doppler technology is....the transducer wand is supposed to cover the entire vein, not 2 "apical sites." I think this is a very important difference.

And, they even admit that they didn't really understand the transcranial doppler testing --which is something that has been a problem at BNAC, as well....of this Dr. Zamboni states-



So, make of that what you will. I think the transcranial doppler testing is just making a mess out of testing results.

I've stated online many, many times that Jeff had a normal doppler at Stanford. The techs caught his collateral blood flow, and were not able to detect the stenosis high, at the base of his skull. Only a skilled transcranial doppler technician/machine could have done that.

The bottom line is that Dr. Zamboni created the doppler criteria to appease his Italin ethics committee, so that they would allow him to do the gold standard venography....here is his own description from Dr. Sclafani's thread.



In the end, I'm sure Dr. Zamboni will address all of this himself in medical journals, he sure doesn't need me--- but I felt it was important to address the paper, not the authors or their motivation. Because, as I've learned...it all boils down to the science, anyway.
thanks for letting me go on....
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

In (a partial) answer to your question, a quote from Ursula, from the thread that cheerleader linked to above.