This Is MS Multiple Sclerosis Community: Knowledge & Support

The dogs are barking, but nobody's home. Again.

Does someone think it believable, that 'MS' causes congenital malformations? That anything much has been "proven" in these hastily contrived papers, aimed at saving some already lost income

I don't refer to the Buffalo crowd, or to Haacke or Simka. I suppose controversy makes the wheels go round and many further studies and dinners out are warranted. I continue to believe that ever-scarcer research money is being squandered, trying over and over to disprove the truth, while people die daily of CCSVI.

One of them could be a Shakespeare or a Darwin. Has the value of life gone so low? I hope the next conference on CCSVI is not held by a hostile crowd, but by people willing to roll up their shirt-sleeves, not worried about funding.

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

Many media outlets have obituaries [ sp ] pre-written and ready to go .... in the event someone rich and or famous ... bites the dust

Proof of this ..... is when someone jumps the gun ..... and rolls out the Obit ...... and then ...said person .... turns out to be alive and kicking .

There is a huge competition to be FIRST .... in any media information .

Mr. Success is of the belief ..... that the negitive ECTRIMS media reports
........ were constructed well in advance of the conference ......

No matter what proof or facts or information CCSVI proponents provided the assembled audience.



Mr. Success

My two cents:

This conference is more or less a breakthrough for CCSVI.

A skeptic confirms, that CCSVI is highly associated with MS ( Early 24% -> Late 92%).

If you take venous problems in legs, they start approx. in the age of 20 and will increase over decades. The same timing like in MS.

R.

I guess I'll just never understand how MS could cause CCSVI since it manifests itself in so many different ways that don't necessarily seem related to me (narrowing of a vein vs. fault valves vs. missing veins vs pressure of bones vs etc.)

I agree with Motiak, if MS caused CCSVI then CCSVI would not be likely to present in the incredibly variable ways in which it does.

To me a more logical explanation would be that ms and ccsvi share a common cause. This would explain why some people without ms have ccsvi an vice versa

“Surgery is not recommended at this stage” Dr. Paulo Zamboni, Ferrara, Italy, said during his presentation.
I find this statement a little confusing, did he not operate on his wife.
Is he telling us to wait.

Without access to Dr Zamboni's full statement I choose not to read too much into this comment. There is no way to determine context or his full intent without it.

In other venues I have heard him say "clinical trials are needed" and/but "patients should be treated on a compassionate basis".. both project calm and sound advice. "Primum non nocere"..First, do no harm.

Percutaneous Endovascular Procedure Proven Safe and Tolerable in Patients With MS: Presented at ECTRIMS
By David S. MacDougall

GOTHENBURG, Sweden -- October 17, 2010 -- A minimally invasive endovascular treatment for chronic cerebrospinal venous insufficiency (CCSVI) has proven safe and well tolerated in a small group of patients with multiple sclerosis (MS), according to a report presented here at the 26th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS).

CCSVI is a condition characterised by multiple strictures at the level of the main extracranial cerebrospinal venous outflow tracts that may interfere with normal venous drainage. CCSVI has been implicated in the pathophysiology of MS, but the association remains unproven and controversial.

A group of 15 patients with MS were enrolled in a longitudinal pilot study of endovascular treatments described here on October 14 by Paolo Zamboni, MD, Vascular Diseases Center, University of Ferrara, Ferrara, Italy.

All subjects had CCSVI as previously determined by magnetic resonance imaging (MRI) studies, and were treated with standard disease-modifying MS therapies. Half of the patients received immediate endovascular treatment and the other half received delayed endovascular treatment 6 months after study enrolment.

Endovascular treatment consisted of selective venography of the cerebrospinal vasculature complemented by percutaneous balloon dilatation when indicated. All patients were prospectively evaluated with sonography, MRI, and clinical examinations for up to 12 months following endovascular treatment.

No serious adverse events were observed during the study. One patient developed a transitory vasovagal syndrome about 1 hour after endovascular treatment.

Restenosis occurred in 29% of the patients (2 in the immediate endovascular-treatment group and 2 in the delayed endovascular-treatment group) between 3 and 12 months after endovascular treatment. No significant worsening of MRI or clinical features was observed in either group following endovascular treatment.

The T2 lesion number decreased significantly in the delayed endovascular-treatment group during the time between initial study enrolment and the 6-month follow-up after endovascular treatment (P =.0227).

Additional and larger studies are needed to determine the potential role of endovascular treatment in the treatment of patients with MS, Dr. Zamboni concluded.

Funding for this study was provided by Hilarescere Foundation.

[Presentation title: Endovascular Treatment for Chronic Cerebrospinal Venous Insufficiency in Multiple Sclerosis. A Longitudinal Pilot Study. Abstract P508]


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Seen on:

http://multiplesclerosis-beta2kimo.blog ... vi_17.html

Look who posted the link, that should tell you all you need to know about the bias that article presented.

Zamboni (and a whole lot of other doctors) know they're on to something big here ... he wants clinical trials to verify it. That is what's needed for "science".

In my opinion, the medical tourism is definitely hurting the CCSVI cause. Have the Polish doctors found nearly the amount of azygous problems Zamboni's RESEARCH found? No ... so they're not doing something right ... and patients are having something missed as a result that if Zamboni's team had treated them most likely would have been found.

Go Local ... but privately, I'm confident, Zamboni would tell you to get treated by a reputable doctor - locally, because this is a breakthrough.


Let people like the one who posted this link wait ... but don't forget, he wants his mother at the front of the line for treatment when time comes. He's said so himself.

Thanks CCSVIhusband for the reply
Funny how you can take out of context a snippet of a statement.
I wish we could go locally, the waiting is very frustrating up in the great white north.
Chinks are beginning to appear in the armor of our medical establishment i hope.

About this study --> No evidence for cerebro-cervical venous congestion in patients with multiple sclerosis
F. Doepp, F. Paul, J.M. Valdueza, K. Schmierer, S.J. Schreiber (Berlin, Bad Segeberg, DE; London, UK

One thing which Id like to have clearance is this "The decrease of total jugular BVF upon turning into the upright position was less pronounced in patients (173 ± 235 vs 362 ± 150 ml/min; p<0.001), leading to higher BVF in the latter position (318 ml/min ± 242 vs 123 ± 109 ml/min; p<0.001)."

So this means, that there is abnormal flow with MS-patients in jugulars in upright position? But what about supine position, no difference in blood flow..?

I'm really tired of the negative attitude from our Swedish neurologists. It is also difficult to get vascular surgeons/radiologists interested, they refer to our neurologists. After the ECTRIMS meeting, the neurologists MS-association have posted on their website that there is no scientific support for CCSVI and refers to Zamboni, Doepp and the Swedish Umeå study and advise against the treatment. During the meeting the Swedish neurologists contacted the press with old news (probably so nobody would pay attention to CCSVI). Do you have any ideas on what to do?

Open letter of President Prof. Roversi Monaco on recent developments with respect CCSVI after the intervention of Prof. Zamboni to Gotemborg (October 13, 2010) (google translation from http://www.fondazionehilarescere.org/pd ... 101019.pdf)

The Symposium, funded by the Foundation to Charcot 'ECTRIMS Gothenburg (13 to 16 October 2010) was dedicated to chronic venous insufficiency cerebrospinal (CCSVI).
The real conclusion of the Symposium is synthesized by Prof Hommes, Chairman of the Charcot Foundation, and projected to 4000 before Congress, Hommes use a phrase of Thomas Kuhn:
"Only when new phenomena are being shown a stubborn refusal to be harmonized in the existing science ..... may lead to new theories"
The statement is deeply connected with the theme of the nodal addressed during the conference in this year that the central event of one of the most important conferences in the world of MS, was dedicated to CCSVI or pathology of the cerebral venous system described by Italian researchers , with the assistance of its discoverer, Prof. Paolo Zamboni.
The rest of the conference confirmed the claims: independent research has shown 700 consecutive phlebographies performed on patients with multiple sclerosis who also had 97% CCSVI. Prof. Zivadinov also showed that MRI is inadequate for the diagnosis of chronic venous insufficiency cerebrospinal which is clearly identified by ultrasound as a tool used in the "Protocol Zamboni." Were shown and discussed other work against, including national origin, this proves that the scientific debate is intense around CCSVI, and what arouses interest.
The negative results in the absence of appropriate methodologies AISM IMF should lead to a serious reflection before investing € 900,000 of money collected in public squares and used for this purpose, instead, to confront evil and deviant poorly with this protocol. In fact - as stated by Prof. Zamboni - no corrections to the research method deployed by the IMF-AISM, these will be measured by what they knew or wanted to know, not what has been maintained by us. This original sin is so prejudicing possible outcomes have to be forced to resign from the study the discoverer.
Likewise, research supported by some groups for 2.4 million U.S. dollars, using magnetic resonance imaging, to be reviewed in approach or will be insignificant. And everything normal when established beliefs are shaken; not normal, though, and disrespectful of patients, persist in errors in the methodology approved by science.
Especially when the most important contradictor to date of the theory of correlation CCSVI / MS, Dr. Doepp, often referred to by the same associations to support their caution, it was shown in Goteborg embarrassed and did not give any explanation when the prof. Paolo Zamboni, resuming the work of the German counterpart of the last ten years, has demonstrated its system for calculating cerebral venous Doppler flow could lead to errors of up to 40%, thus proving to be an inadequate instrument and questionable.
The latest studies of Prof. Zamboni and Dr. Salvi, supported internationally by Prof. Bakshi, Prof. Zivadinov, Prof. Haacke, Prof. Bianca Weinstock-Guttman, Prof. Lee Byung-Boong, Prof. Ferlini and others, also indicate clearly the close relationship between CCSVI and multiple sclerosis. This is very valid reasons to believe the prof. Paolo Zamboni. To better define the scope and consequences of this association, are now properly required a larger number of studies dimensionally we're doing or planning as represented to the Minister Fazio recently we enjoyed the closeness and dedicated attention.
Recall that the opinion of the Health Council was to consider "the results of 18 months prior experience in the correction of stenosing lesions such as encouraging" and that it was claimed that the remarks made by Prof. Zamboni is "no doubt of interest and worthy of investigation with all the tools that medical research available today." Pending the outcome of the coming years, therefore, first put forward as essential for the confirmation of CCSVI and now - it seems - deemed unnecessary to enact the inconsistency, we must assist in communications marked by almost a relief that "is not the CCSVI cause of MS." Not to say that what you produce scientific evidence and without, with due sincerity, we admit that still need years of work.
We find this attitude is inappropriate in terms of the scientific method is, and even more so, the proper respect for the suffering of the sick. So we want the best scientific and methodological rigor is, in the dutiful care, the utmost respect for the sick.

Prof. Fabrio Roversi-Monaco
President of Hilarescere Foundation
Bologna, October 19, 2010