ISNVD 2017 in Italy

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

Re: ISNVD 2017 in Italy

Postby cheerleader » Wed May 24, 2017 3:42 pm

Hi M.A., Rogan and Cece--

The science is taking a long time, but the fact that Dr. Zamboni's Brave Dreams results will be published later this year is actually a good thing. Dr. Zamboni wanted to wait to make any announcements, until all of the neurologists and vascular specialists had a chance to review the blinded study information. He explained why in a live presentation at the Veith Conference in November last year.
http://ccsviinms.blogspot.com/2016/11/d ... reams.html

The Brave Dreams trial is a scientifically robust, double-blinded, placebo controlled trial. It is currently embargoed--meaning we will not know specific results until it is published in a peer-reviewed journal. Because it is an interdisciplinary study involving neurologists, interventionalists, vascular and imaging specialists, it is going to take a lot of work to get the results vetted by all, and written up in a manuscript everyone agrees to. Dr. Zamboni stressed that this is essential, in order to have the science taken seriously and published.

What we do know--this was a six center study throughout Italy. 200 subjects started the year long study, 125 people completed it. They were mostly RRMS and some SPMS (under 5.5 EDSS) who were investigated, treated (or not if they were in the sham control) and followed a year through completion of this study. There were primary endpoints, which Dr. Zamboni explained were OBJECTIVE. This means that these changes were not subjective, or based on patient's feelings, but were measurable by approved medical instrumentation. These objective measurements included volume of bladder, visual acuity, timed walking and manual dexterity, as well as MRI lesion consideration. All of these measurements were looked and compared during 3, 6, 9, and year intervals. The first paper will report on these primary endpoints after treatment, and will hopefully be available next June.

As Dr. Zamboni stressed---this type of trial is unique and should become the gold standard for MS treatments. NO drug trial has ever been weighted and measured in such a precise, objective way.

To the patients, Dr. Zamboni asked us all to "be patient". There will be more coming on how CCSVI treatment improves perfusion and cerebrospinal flow, as well as how it helps with depression, memory, fatigue, and cognition. This research is more "like an opera"--it is going to take cross-disciplinary collaboration and cooperation. Across disciplines and countries.


The ISNVD continues to grow in scope and outreach. This year's meeting will have published info to share in the coming month or so. I'm thrilled that the Nedergaard Lab and the Kipnis Lab (both of whom I introduced to the ISNVD) are continuing their own independent search into the connection of CCSVI and lymphatic cleansing of the CNS.

Alitalo is one of several scientists exploring this new world. Working independently, several other researchers, including Maiken Nedergaard of the University of Rochester and Jonathan Kipnis of the University of Virginia School of Medicine, have also shown that lymphatic vessels extend into the brain.
The discovery is much more than a historical footnote. It has major implications for a wide variety of brain diseases, including Alzheimer’s, multiple sclerosis, stroke and traumatic brain injury.

Alitalo, Nedergaard, Kipnis and others have found evidence that when the systems malfunction, the brain can become clogged with toxins and suffused with inflammatory immune cells. Over decades, this process may play a key rolein Alzheimer’s disease, Huntington’s disease, Parkinson’s disease and other neurodegenerative illnesses, research suggests. “This is a revolutionary finding,” Nedergaard says. “This system plays a huge role in the health of the brain.”
https://www.washingtonpost.com/national ... df9e0fc6d9

I find it easier to communicate without innuendo and confusion on Facebook and thru my blog. Lots of updates on the science here https://www.facebook.com/CCSVI-in-Multi ... 796282297/ and here http://ccsviinms.blogspot.com I'm sorry not to be around this forum as often, but life has continued for our family. Jeff and I are very thankful to all of the researchers who continue this work, and Jeff is still happy he was the first treated at Stanford. I hope all are well.
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: ISNVD 2017 in Italy

Postby Cece » Sun May 28, 2017 7:27 am

http://www.medlink.com/scripts/mpdf/pri ... ryid=19127

A report from ISNVD? It's a detailed 11 page overview of CCSVI, with pages of citations, by Dr. Zivadinov and Dr. Jakimovski of the University of Buffalo.
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