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Press Release- A good summary of event in Bologna

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

Press Release- A good summary of event in Bologna

Postby cheerleader » Tue Sep 08, 2009 8:13 pm

This was released to press on the 8th, I received it from the press office and it's up at Fondazione Hilarescere site. Again, I WISH (like all of you) we had copies of the Liberation results that will be published in the Vascular Journal next month...I do not have firm numbers to share, and that is frustrating. It's one thing to make statements, and another to have concrete numbers to back them up. I also wasn't able to hear the MS Liberation patients do their interviews, but they were all Italian, and from a quick check on google news, it looks like this was only covered by the Italian press...I had hoped we'd get some wire coverage, but that may be coming. My comments are in ( )
cheer

I'll have my notes and the back and forth from the conference within the next day-

PRESS RELEASE
Bologna, Tuesday Sept. 8, 2009
FONDAZIONE HILARESCERE
Venous Function And Multiple Sclerosis
International Coterie

Four main points concerning the relationship between CCSVI and MULTIPLE SCLEROSIS were covered by several experts at a Meeting in Bologna. All the investigations that gave an answer to these 4 fundamental points were coordinated by Prof Paolo Zamboni who discovered CCSVI and its association with Multiple Sclerosis; in some other cases, research was carried out in cooperation between Prof Zamboni and major foreign Universities.
1) What is the origin of the extracranial cerebral vein stenoses which characterize CCSVI?
2) Are there advanced diagnostic systems capable of identifying which changes are caused by CCSVI in the central nervous system?
3) Can CCSVI be treated and how?
4) Can CCSVI therapy improve the clinical outcomes of MS and affect its prognosis?


Venous Function And Multiple Sclerosis is an international coterie of experts who met in Bologna on September 8 to discuss these issues from the perspective of neurologists – who have developed the scientific body of knowledge on MS – and the vascular and neurological surgeons who have further investigated these topics following the discovery of CCSVI. All investigations were coordinated by Professor Paolo Zamboni who discovered CCSVI and its association with multiple sclerosis.
This first study was conducted by an Italian research team composed of the vascular surgeons’ group headed by Professor Paolo Zamboni from the University of Ferrara and the neurologists’ group from the Department of Neurosciences of the Bellaria Hospital in Bologna headed by Dr. Fabrizio Salvi.
Fondazione Hilarescere is a foundation specially set up to provide adequate means and resources for research into medical and scientific insights aimed at fully understanding and curing diseases which are still partly unknown.
Fondazione HILARESCERE, chaired by Professor Fabio Roversi-Monaco, was set up on an initiative of Fondazione Cassa di Risparmio in Bologna.


THE MOST IMPORTANT ANSWER OF ALL:
endovascular therapy has led to a decrease in the number of disease relapses, a marked reduction in the number of active brain and spinal lesions and also a clear-cut improvement in the patients’ quality of life.

Prof. Paolo Zamboni headed a study where, together with Dr. Fabrizio Salvi, he was able to show that in patients with the clinical form of Relapsing-Remitting MS – which is the most common – there is a drop in the number of active lesions which persists up to 18 months after surgery. The percentage of active lesions falls from 50% to 12%, thus showing that the additional treatment of CCSVI reduces the aggressiveness of the disease. This finding is further confirmed by the number of patients who showed no relapses after endovascular surgery. In the 2 years before surgery, acute multiple sclerosis attacks were found in 50% of the recruited patients, while in the 2 years following surgery 73% of the patients had no more attacks, with a change in the clinical course of the disease. In all these patients also cognitive and motor activities – assessed by means of an outcome measure called MSFC - are significantly and persistently improved while the same is not true for patients with the progressive forms of the disease. In the latter, however, progression was stopped and the patients’ quality of life improved.
________________
The experts discussed, provided data and gave an answer to all 4 fundamental questions:
1) What is the origin of the extracranial cerebral vein stenoses which characterize CCSVI?
3 scientists answered this question from different perspectives: Professor Byung B. Lee, Georgetown University School of Medicine di Washington DC, showed that the malformations found in CCSVI are (MIGHT BE, IN MY OPINION) congenital truncular malformations which therefore certainly precede the development of Multiple Sclerosis. For this reason they cannot be regarded as a consequence of Multiple Sclerosis. Prof. Lee showed in which phases of the venous system development the malformations observed in CCSVI may appear. Byung B. Lee is the Chairman of the World Consensus Conference which gathers vascular experts from 47 countries and recently approved a scientific update on venous malformations in Montecarlo. (1)
Professor Giulio Gabbiani, Centre Médical Universitaire di Ginevra, demonstrated that there are no auto-immune phenomena in diseased veins thus excluding that the malformations found in CCSVI result from Multiple Sclerosis. (THIS WAS THE CHICKEN/EGG CLINCHER) He showed the results of a study which provides a histologic comparison between the walls of the veins affected by CCSVI-MS and those of normal subjects. Furthermore, at molecular level, CCSVI veins are structurally different from those of the control subjects, thus confirming the approach of the Montecarlo Consensus Conference. Prof. Gabbiani is one of the most important world experts in microscopic vessel wall morphology. (2)


The third presentation was about whether – genetically speaking – these malformations have any correlation with the findings so far obtained from the genetic study of MS. Prof. Alessandra Ferlini, Director of the Institute of Genetics at the University of Ferrara, discussed this point by presenting the promising results of a pilot study. (3) (THIS DISCUSSION WAS SO OVER MY HEAD, I FELT RETARDED, BUT THEN DR. D TOLD ME HE HAD TROUBLE WITH IT, AND I FELT MUCH BETTER....)

2) Are there advanced diagnostic systems capable of identifying which changes are caused by CCSVI in the central nervous system?
This is the second question addressed at the Meeting. Professor Mark Haacke, Director of the MRI Istitute for Biomedical Research in Detroit (4,5,6) and Professor Bianca Weinstock-Guttman, Neurologist at the Jacobs Neurological Institute (7) showed new magnetic resonance (MRI) parameters linked to CCSVI which might in the future bring about a true revolution in the way of diagnosing MS. These new parameters include: quantification of iron deposits and volume assessment of intracranial veins and CSF. (THIS PRESENTATION WAS FAN FRICKIN-TASTIC, AND BROUGHT IT ALL HOME....HAACKE IS BRILLIANT, HE INVENTED SWI TECHNOLOGY)

3) The third question that was answered at the Meeting was: Can CCSVI be treated and how? Innovative minimally-invasive endovascular repair techniques were discussed on account of the findings obtained by Dr. Roberto Galeotti (8), Head of the Interventional Radiology Section at the University Hospital of Ferrara who was the first in the world to perform this type of surgery, and Dr. Michael Dake, Chief of Cardiovascular and Interventional Radiology at Stanford University School of Medicine (California), who was the first to treat CCSVI outside Italy.
The most important finding is safety. At 2-year follow-up no major complications were observed. All surgical procedures were performed on a day hospital basis. Statistically, this treatment decreases pressure in the cerebral veins in a highly significant way, thus showing its enormous anti-inflammatory potential. (8)
The risk of re-stenosis is 16 times higher in the jugular veins than in the azygos vein, thus pointing to the need for more sophisticated and efficient tools to approach the former. Research will make such tools available during 2010. (THIS IS BASED ON LIBERATION PROCEDURE, NOT STENTING....THE JUGS WANT TO CLOSE BACK DOWN...ZAMBONI IS LOOKING INTO STENTING AND OPEN SURGERY FOR THE NECK.)

4) The fourth and fundamental point is whether CCSVI therapy can improve the clinical conditions of MS and affect its prognosis.
Dr. Fabrizio Salvi from the Bellaria Hospital in Bologna was the first Neurologist who studied the clinical correlations of CCSVI treatment in MS patients together with Prof. Paolo Zamboni. The patients enrolled in this study were 120 from all clinical classes, but only the results of the 65 subjects who are over 18 months from surgery will be reported in order to describe the outcome with the greatest possible accuracy. Generally speaking, patients treated with endovascular therapy showed a decrease in the number of disease relapses, a marked reduction in the number of active brain and spinal lesions and also a clear-cut improvement in the patients’ quality of life. The findings of this investigations will soon be published in detail on the Journal of Vascular Surgery. (8) (SHOW ME THE MONEY!!!! I WANT NUMBERS, PEOPLE!)



Finally, Dr. Robert Zivadinov, Jacobs Neurogical Institute di Buffalo, discussed the results of a revolutionary pilot study performed last year where both American and Italian patients were blindly assessed in the USA by means of advanced MRI technology, then submitted to vascular surgery in Italy and followed up during the following year. (9) This study was defined by the patients who volunteered to participate as the study of the 50,000 miles for treatment, because of the many trips they had to take overseas. This study was sponsored by Fondazione Hilarescere.

References:

(1) World Consensus Conference on Venous Malformations, Montecarlo September 4th 2009. This document was approved by experts from 47 different countries and will be published on all most important vascular surgery journals.
(2) G. Gabbiani, M. Coen, F. Mascoli, P. Zamboni. Manuscript in preparation.
(3) A. Ferlini, M. Bovolenta, M. Neri, F. Gualandi, A.Yuryev, F. Salvi, A. Liboni and P. Zamboni. Manuscript in preparation.
(4) Haacke EM, Makki M, Ge Y, Maheshwari M, Sehgal V, Hu J, Selvan M, Wu Z, Latif Z, Xuan Y, Khan O, Garbern J, Grossman RI. Characterizing iron deposition in multiple sclerosis lesions using susceptibility weighted imaging. J Magn Reson Imaging. 2009;29:537-44.
(5) A. V. Singh and P. Zamboni Anomalous venous blood flow and iron deposition in multiple sclerosis. J Cereb Blood Flow Metab. 2009 Sep 2. [Epub ahead of print]
(6) P. Zamboni, E. Menegatti, B. Weinstock-Guttman, C. Schirda, J. L. Cox, A. M. Malagoni, D. Hojnacki, C. Kennedy, E. Carl, M. G. Dwyer, N. Bergsland, R. Galeotti, Sara Hussein, I. Bartolomei, F. Salvi, R. Zivadinov. The severity of altered venous haemodynamics is related to CSF dynamics in chronic cerebrospinal venous insufficiency Submitted To Current Neurovascular Research
(7) P. Zamboni, E. Menegatti, B. Weinstock-Guttman, C. Schirda, J. L. Cox, A. M Malagoni, D. Hojnacki, C. Kennedy, M. G. Dwyer, N. Bergsland, R. Galeotti, I. Bartolomei, F. Salvi, M. Ramanathan, R. Zivadinov. Csf flow and brain volume in multiple sclerosis are associated with altered cerebral venous doppler haemodynamics. Study presented at the European Multiple Sclerosis Congress ECTRIMS Düsseldorf, 9-12 September 2009
(8) P. Zamboni, R. Galeotti; E. Menegatti; A. M. Malagoni, S. Gianesini, I. Bartolomei, F. Mascoli, F. Salvi Endovascular treatment of chronic cerebrospinal venous insufficency. A prospective opern-label study. Journal of Vascular Surgery, 2009, in press.
(9) P. Zamboni, R. Galeotti, B. Weinstock-Guttman, G. Cutter, E. Menegatti, A. M. Malagoni, D. Hojnacki, J. L. Cox, C. Kennedy, I. Bartolomei, F. Salvi, R. Zivadinov Endovascular Treatment for Chronic Cerebrospinal Venous Insufficiency in Multiple Sclerosis . A longitudinal pilot study. Study presented at the European Multiple Sclerosis Congress ECTRIMS Düsseldorf, 9-12 September 2009


Bologna, 8 September 2009
Press Office: Laboratorio delle idee – Francesca Rossini –
Tel.+39-051-273861 – cell.+39-331-6752354 e +39-335-5411331 labidee.ufficiostampa@labidee.it
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Tue Sep 08, 2009 8:26 pm

That is a lot of info Cheer.

Thanks for posting, the numbers will come soon, we just have to be patient.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby prof8 » Tue Sep 08, 2009 8:27 pm

Thanks Cheer for all the hard work with your research and notetaking. It is fascinating. I am lined up to go see Dr. Dake in Dec.

I am wondering if you would be willing to talk about how much disagreement there was over CCSVI and its connection to MS. I know in another post you commented on how polite and restrained the doctors were as they went back and forth over the material. (unlike online folk!) Did you get the sense that neurologists not specifically involved in the research were open to this idea? Or were they skeptical and protecting their "turf" of the strictly autoimmune theory? More specifically, I am wondering what Dr. Elliot Frohman--a nationally known and bigwig MS researcher and neurologist--had to say. I think I saw his name as chairing one of these panels. Thanks!! :)
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Postby cheerleader » Tue Sep 08, 2009 8:35 pm

prof8 wrote: Did you get the sense that neurologists not specifically involved in the research were open to this idea? Or were they skeptical and protecting their "turf?" More specifically, I am wondering what Dr. Elliot Frohman--a nationally known and bigwig MS researcher and neurologist--had to say. I think I saw his name as chairing one of these panels. Thanks!! :)


Prof-
The neuros were REALLY receptive. Surprisingly so. Dr. Frohman commented that he wants to look at ALL autoimmune diseases from a venous paradigm, I'll go into more detail in my notes, but he is on board with this. The back and forth was more about finer points, but it seemed to me that everyone in the room accepted CCSVI as part of MS, and are fascinated and wanted to learn more. No dissent in the reality of the venous connection...dissent was about how to deal with it in the future. I felt no turf wars, except for one person I met who puts together drug trials...their comment was "If this is true, I'm out of work."
More to come....gotta get ready for the airport
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureIous » Tue Sep 08, 2009 8:47 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:54 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby chrishasms » Tue Sep 08, 2009 8:47 pm

123
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Postby radeck » Tue Sep 08, 2009 9:29 pm

Thanks so much. One thing I'm confused about is that you mention a study by Zamboni and Salvi to be published next month in the Journal of vascular surgery, and that you did not hear any concrete numbers about this studies outcome yet. You also mention a study by the two with quantitative results, i.e. the percentage of active lesions falls from 50% to 12%, and relapse rate going down from 50% in two years to 23%. Are these two studies related?
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Postby cheerleader » Tue Sep 08, 2009 9:58 pm

Mark...no translation...they gave me the English. I'm not that good! Nice interview, BTW...thought you gave a really good overview of the Stanford experience.

Zadeck...those are the same studies...I just wanted the charts with numbers, participants, break down of RRMS, PPMS, etc. The percentages are terrific, don't get me wrong...but I had hoped the research paper might have been made available before press to the participants at the conference.
breakfast!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby guitarguy » Wed Sep 09, 2009 6:09 am

wow dr. frohman was there, he is my doc! Well at least I know when I go in to see him he won't be clueless when I mention this to him.
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Postby mrhodes40 » Wed Sep 09, 2009 6:24 am

Man I am so glad Cheer put her health and body on the line for us so we could all get this material. She assured me she has a great constitution, but, man! 2 14 hour trips over several time zones in 4 days? That is taking one for the team. Hats off and Thanks for doing it

he wants to look at ALL autoimmune diseases from a venous paradigm


this is a little OT but I need to mention it in relation to that comment---my rheumatoiid arthritis was SOOOOOooooo much better on coumadin. Now don't get me wrong, I hated the coumadin and will NOT use that as a therapy,, but it really made me realize that perhaps "thin" blood that gets around better might have something to do with RA. a little more OT, germs make blood sticky......... that is an entire forum of its own of course>

back to the really super cool trip info....
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby javaneen » Wed Sep 09, 2009 6:25 pm

Wow! Thanks Cheer! What would we do without you...where would we be now without all your help, dedication and hard work. I haven't even finished reading it yet...I printed it out for some good reading before bed.

Thanks again!!
javaneen
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Postby ErikaSlovakia » Thu Sep 10, 2009 12:27 am

Thanks Cheer!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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