Anyone contacted prof. Zamboni? : Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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Anyone contacted prof. Zamboni?

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BBE

Post subject: Anyone contacted prof. Zamboni?

Posted: Fri Oct 09, 2009 3:25 am

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Joined: Sat Sep 05, 2009 3:00 pm
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Location: Slovakia

Did anyone here contact prof. Zamboni? Does he answer on questions? Is he performing any diagnosis or surgery on demand or doing research only?

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sou

Post subject:

Posted: Sat Oct 10, 2009 2:19 am

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Joined: Sat Dec 20, 2008 4:00 pm
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Location: Greece

Hi.

From a short email conversation we had, he made clear that he would treat patients after January, when his trial ends, provided that everything goes well in the trial.

My radiologist has phoned his team several times asking about detailed instructions on how to perform the Dopplers, but they are very cautious and reluctant to give away any information. It seems that January is the milestone.

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

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DIM

Post subject:

Posted: Sat Oct 10, 2009 2:57 pm

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Sou If you don't mind may I ask you what type of MS are you suffering from, how many years, what EDSS level and finally are you going to visit Prof. Zamboni and have the doppler test?
We - the Greeks - are so close to his team but you are probably the first and only MSer that tries to contact him, I believe it is worth the effort!

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BBE

Post subject:

Posted: Sun Oct 11, 2009 1:51 am

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Ok, I recieved an answer from him yesterday.
He said there will be a study with midterm followup after endovascular
treatment of CCSVI published on the J of Vascular Surgery next December and that we should wait for it because any detail will be explained. I am not sure but next December means December 2010 to me.

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sou

Post subject:

Posted: Sun Oct 11, 2009 2:12 am

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Joined: Sat Dec 20, 2008 4:00 pm
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Hi.

Well, next December seems to be December 2009, not 2010. Can anybody clarify it? I think that this study was approved for publishing in August and it takes 3-4 until it is published, not 1 year.

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

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LR1234

Post subject:

Posted: Sun Oct 11, 2009 7:36 am

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Location: California

Gosh, I hope its Dec 2009 I don't think I can stay on top of the MS until 2010!

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radeck

Post subject:

Posted: Sun Oct 11, 2009 7:58 am

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The entire CCSVI forum has been waiting for this paper, and the assumption since the Bologna conference had been that it would be published this month (October). This was apparently a misunderstanding, so that December of this year must be it. It is very unlikely that it would get delayed by 14 months, more likely 2 months.

I wonder what caused this delay though...if it was indeed submitted in August that is a long referee process! Also I find it a little odd that they would claim at the conference (which was in Sept) that it would be out in Oct. Could be that the referee requested some major changes and that they're working on these right now, but this is just speculation.

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BBE

Post subject:

Posted: Sun Oct 11, 2009 8:46 am

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I don`t know, but has this already been published here on forum ? (from Zamboni)

Objective: Chronic cerebrospinal venous insufficiency (CCSVI) is a vascular picture characterized by combined stenosies of the principal pathways of extracranial venous drainage, including the internal jugular veins (IJVs), and the azygous vein (AZY), with development of collateral circles and insufficient drainage proved by increased mean transit time in cerebral MRI perfusional study. CCSVI is strongly associated with multiple sclerosis (MS), a neurodegenerative disease considered autoimmune in nature. Aim of this study is to evaluate the safety of CCSVI endovascular treatment and the influence on the clinical outcome of the associated MS. Methods: Sixty-five (65) consecutive patients affected by CCSVI subdivided by clinical course of MS into 35 with relapsing remitting (RR), 20 with secondary progressive (SP), and 10 with primary progressive (PP), underwent percutaneous transluminal angioplasty (PTA). Mean follow-up lasted 18 months. Vascular outcome measures: postoperative complications, venous pressure, patency rate. Neurological outcome measures: cognitive and motor function assessment (MSFC), rate of MS relapse, rate of MRI active positive enhanced gadolinium MS lesions (Gad+), QoL MS questionnaire. Results: Endovascular treatment of CCSVI was feasible in Day Surgery with a minor and negligible complication rate. Postoperative venous pressure was significantly lower in the IJVs, and in the AZY as well (p<0.001). The risk of restenosis in the IJVs was higher as compared to the AZY (IJVs patency rate 53%, AZY patency rate 96%, respectively: OR 16, 95% CI 3.5-72.5 p<0.0001). Clinical outcome measures of MS were significantly improved by CCSVI endovascular treatment, especially in the RR group: rates of relapse- free patients passed from 27% to 50% postoperatively (p<0.001), and that of MRI Gad+ lesions from 50% to 12% (p<0.0001); MSFC at one year improved significantly in RR (p<0.008), but not in PP or SP; finally, physical QoL improved significantly in RR (p<0.01) and in PP patients (p<0.03), with a positive trend in SP (p<0.08 ). Mental QoL showed significant improvement in RR (p<0.003) and in PP (p<0.01), but in SP did not. Conclusions: PTA of venous strictures in CCSVI patients is safe, and especially in patients with RR clinical course demonstrated to positively influence clinical and QoL parameters of the associated MS respect to preoperative assessment. Restenosis rates are elevated in the IJVs but very promising in the AZY, suggesting the need to improve endovascular techniques in the former. The result of this pilot study warrants a subsequent randomized control study.

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Sarahbellum

Post subject: Journal of Vascular Surgery

Posted: Sun Oct 11, 2009 5:12 pm

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Location: east coast

Journal of Vascular Surgery does NOT list any articles by Zamboni or about CCSVI in publication pipeline....

Maybe it is 12/2010...

http://www.jvascsurg.org/inpress

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"Sara Bellum"
sarabellum2009@gmail.com

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radeck

Post subject:

Posted: Sun Oct 11, 2009 5:20 pm

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Joined: Mon Feb 16, 2009 4:00 pm
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Seems like those who went to the bologna conference would know best about the date. Cheer? BBE, where did you find this abstract?

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cheerleader

Post subject:

Posted: Sun Oct 11, 2009 5:43 pm

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Joined: Mon Sep 10, 2007 3:00 pm
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Location: southern California

radeck wrote:

Seems like those who went to the bologna conference would know best about the date. Cheer? BBE, where did you find this abstract?

http://www.fondazionehilarescere.org/eng/stampa.html
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.

we were told October 2009 in Bologna...apparently now it is Dec. 2009.

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

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cheerleader

Post subject:

Posted: Sun Oct 11, 2009 6:14 pm

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Joined: Mon Sep 10, 2007 3:00 pm
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Location: southern California

I understand the frustration and sense this is taking too long: but it was only last December Dr. Zamboni's paper defining CCSVI was published. Here is a list of his recent publications...the man is working as fast as he can. Our frustration should not be directed at him-

Quote:

P. Zamboni. The Big Idea: iron-dependent inflammation in venous disease and proposed parallels in multiple sclerosis. J R Soc Med. 2006;99:589-93

P. Zamboni, E. Menegatti, I. Bartolomei, R. Galeotti,A. M. Malagoni, G. Tacconi, and F. Salvi. Intracranial Venous Haemodynamics in Multiple Sclerosis. Current Neurovascular Research, 2007, 4, 252-258

E. Menegatti and P. Zamboni Doppler Haemodynamics of Cerebral Venous Return. Current Neurovascular Research, 2008, 5, 260-265

P. Zamboni, E. Menegatti, R. Galeotti, A. M. Malagoni, G. Tacconi, S. Dall'Ara, I. Bartolomei, F. Salvi. The value of cerebral Doppler venous haemodynamics in the assessment of multiple sclerosis. J Neurol Sci. 2009;282:21-7

P. Zamboni, R. Galeotti, E. Menegatti, A.M. Malagoni, G. Tacconi, S. Dall’Ara, I. Bartolomei and F. Salvi.
Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. J. Neurol. Neurosurg. Psychiatry 2009;80;392-399

P. Zamboni, R. Galeotti, E Menegatti, A.M. Malagoni, F. Mascoli, S. Dall’Ara, I. Bartolomei, F Salvi. Rationale and Preliminary Results of Endovascular Treatment Multiple Sclerosis, The Liberation Procedure. In R.M. Greenhalgh, Vascular and Endovascular Controversies Update, BIBA Publishing, London 2009

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]

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.

B.B. Lee, Washington Dc, Usa; John B. Bergan, La Jolla, Ca, Usa; Peter Gloviczki, Rochester, Mn, Usa; James Laredo, Washinton Dc, Usa; Dirk A. Loose, Hamburg, Germany; Raul Mattassi, Milano, Italy; Kuroshi Parsi, Sydney, Australia; J. Lionel Villavicencio, Bethesda, Md, Usa; Paolo Zamboni, Italy.
Guidelines For Diagnosis And Treatment Of Venous Malformations. A Consensus Document Of The International uni0n Of Phlebology.
International Angiology, Vol 28 Aug 2009

ECTRIMS PRESENTATIONS 2009
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
.

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

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

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radeck

Post subject:

Posted: Sun Oct 11, 2009 7:08 pm

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Joined: Mon Feb 16, 2009 4:00 pm
Posts: 398

Thanks Cheer, I was wondering where the abstract came from that BBE posted. Obviously it's not Zamboni's fault if the referring is delayed! I don't think anybody here could ever fault the man for anything to be honest :-)

Sorry if my post seemed to cast suspicion on him and his team. I'm sure they're just trying to make sure that the science is as solid as possible.

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BBE

Post subject:

Posted: Mon Oct 12, 2009 2:04 am

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Joined: Sat Sep 05, 2009 3:00 pm
Posts: 63
Location: Slovakia

I have got the abstract from http://docente.unife.it/paolo.zamboni (PUBBLICAZIONI)

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radeck

Post subject:

Posted: Mon Oct 12, 2009 8:18 am

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Joined: Mon Feb 16, 2009 4:00 pm
Posts: 398

BBE wrote:

I have got the abstract from http://docente.unife.it/paolo.zamboni (PUBBLICAZIONI)

Great find! The abstract gives us a good guess for what to expect. Relapse rate goes down from 50% to 27% (there's a typo in the abstract I hope, as it says from 27 to 50), which is informative because in this paper (http://www.fondazionehilarescere.org/pdf/CX.PDF) it said that it was fourth after surgery of what it was before, but Fig 3 seemed to disagree with this and agrees with the new abstract. Also, the so-called "patency rates" is informative. I think they say how often re-stenosis occurred. Patency rate of 53% means re-stenosis occurred in 47% of patients. This is what I had been waiting to hear because from the fact we knew before that all patients with relapses had re-stenosis (which is not cited in this abstract by the way) doesn't follow that none of the other patients had re-stenosis. Indeed now we can guess that about 20% of RRMS patients had re-stenosis without relapse.

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