(note: For those on google docs who would like to see Carol's presentation with pictures---please use this link--not able to copy pics onto Facebook, since they are pdf files---)
link on google docs
Some brief highlights from Dr Robert Zivadinov's presentation titled Venous Involvement
in Neurological Disorders and Aging, and his informal comments about CCSVI research
generally; as reported by Carol Schumacher, June 8 & 9, 2012, Stanford and Orinda CA.
Dr Zivadinov visited Stanford on June 8 to present his most recent findings at
Grand Rounds at the invitation of John Cooke, MD, PhD.,
Co-director of Stanford’s world renowned Falk Cardiovascular Research Center.
Dr. Cooke’s 25 years of research on the endothelial changes expressed in the presence of turbulent blood flow caused by blocked vessels may shed light on the breakdown
of the blood brain barrier that facilitates the pathogenesis of multiple sclerosis and perhaps other neurological disease. http://cvmedicine.stanford.edu/about/facilities.html
Dr Zivadinov has published over 30 peer reviewed papers on Chronic Cerebrospinal Venous Insufficiency,
A condition first described in association with multiple sclerosis in 2008 by Paolo Zamboni, MD of Ferrara Italy.
From Dr Zivadinov’s lecture:
?Seems that Ultra-high field MRI (7 Tesla and higher) has become an important
tool for assessing perivenous association of MS lesions
?International Society of Neuro Vascular Diseases, (ISNVD.org) is working on
consensus report regarding sensitivity and specificity of different invasive and
non-invasive diagnostic methods for diagnosis of venous abnormalities,
indicative of CCSVI. Of the invasive procedures the Buffalo team has found that
Intra vascular Ultrasound (IVUS) may be more sensitive than catheter venography
(CV).
?His view of the association of CCSVI and MS is that CCSVI may interact with
environmental factors, genetic disposition and possibly infectious agents to
combine with an abnormal immunological response which likely perpetuates MS
disease process. CCSVI may be the consequence of MS for some?
?He said there have been more than enough review studies. We need actual FDA
and IRB approved diagnostic and treatment studies. CCSVI is real and it needs to
be studied to understand its role in disease and the value of angioplasty as a
treatment.
?Lots of problems with stents being reported, FDA issued a warning May 10, 2012.
?One of the biggest concerns about angioplasty, besides safety is durability. A lot
of improvements fade after a few months. Is this placebo? restenosis?
?Dr Zivadinov wants more long term safety studies and phase I and II trials before
randomized phase III trials are done. He believes there are too many unanswered
questions before there CCSVI treatment should be offered in open-label, outside
clinical trials.
?People who had azygos vein lesions were more likely to also have Inflammatory
Bowel Disease which is not an uncommon co-diagnosis with MS.
?He also found CCSVI in around 45% of people with other neurological diseases
and a smaller number of healthy controls. This means CCSVI is much bigger than
MS.
?From all the studies they now find:
?many people with CCSVI have no MS ( significant # of those have another neurological disease)
?many people with MS have CCSVI
?Some people have MS and no apparent CCSVI. (It is critical to use multi modal
imaging including IVUS with venography, but even still some have no CCSVI.)
?At this point it looks like CCSVI is neither necessary nor sufficient for MS, Yet a strong association exists.
?The MS patients who have CCSVI are more likely to have progressive disease than those who do not have CCSVI.
?He (and Dr Cooke’s team at Stanford) will be collaborating W/ Dr Hu in Taiwan
(who is a neurologist who has been treating central vein stenosis as a therapy for
neurological disorders.) They will look into the Taiwanese team’s findings that the
jugular veins get more stenosed with age, perhaps leading to age related
neurological disease. (Dr Hu told us at ISNVD that they don't see much MS but
they see a lot of venous disease causing neurological problems)
?He is also starting an important long term prospective study of radiologically
isolated syndrome subjects with the earliest signs of possible future MS, check
them for CCSVI and all his other screening tests to see what changes over time,
and how many go on to convert to CIS and then “full blown” MS. Other doctors
thought that was a critical thing to see what factors contribute the most.
?Dr Dake spoke of his thinking that diagnostic criteria for CCSVI should be thought
of as being on a spectrum. So rather than yes/no you have it or you don't, it's more
like how severe is it and what symptoms is it causing? Dr Z thinks this may
ultimately lead to abandoning term “CCSVI” in the long-term?
?Dr Z is hiring a team of analysts who will data mine the mountains of data they
collected on over 1000 people. They are getting 200 more healthy controls to fill
out their data set. Each researcher will focus on a different area. infectious agents,
environmental factors, genetics etc. They studied each person extensively and
have enough data that can be mined for at least 100 scientific papers on CCSVI.
?He believes this is very important work and deserves urgent financial support.
?He has broken up the analysis studies he plans so people can fund them in small
sized units. Like one funder chose to pay for the EBV analysis for $10,000. They
get naming rights too.
Conclusion:
CCSVI is a real problem, a new way of looking at neurological disease generally. Many more questions than answers but these academically minded doctors are committed to
doing the hard work to find the truth.
The following day, Annette’s fund hosted a vein-and-brain-healthy brunch from Arlene Hubbard’s gluten-free cookbook, Hubbard’s Cupboard. (hubbardfoundation.org)
Arlene and her husband, David Hubbard, MD, wanted to join the Schumachers and hostess, Leeann Brady, in honoring Dr Zivadinov and thanking him for his work. The Hubbards were unfortunately unable to attend the brunch but their warm wishes were felt through
the delicious recipes that were enjoyed by all.
Contact Linda Safron for Information on donating or hosting your own MStery party:
http://msteryatbnac.wordpress.com/2012/05/18/hello-world/
Carol Schumacher is an advisory Board member of the Annette Funicello Research
Fund For Neurological Diseases at the California Community Fund. (AFRFND).
Michael Dake, MD, Robert Zivadinov, MD, PhD, and David Hubbard, MD are members of the
AFRFND’s Science Review Board.
(http://annetteconnection.com/Meet-our-Board-Members.php)
For more information on CCSVI go to ccsvibook.com,
written by AFRFND Science Review Board member, Marie Rhodes, RN.
________________________________________________________________________________
Thanks to Carol and Scott Schumacher for organizing this fund-raising brunch for BNAC, donating their beautiful glass work, and to Carol for her dedication in fostering research and dialogue for CCSVI research.
(Jeff and I were sorry we couldn't come up and listen to the doctors and feast on Carol's delicious food. We had our anniversary that weekend. It's always inspiring to see how the Stanford doctors I contacted four years ago continue to remain commited to this important research. They are not going away!)
Carol and the Bay Area CCSVI MSkateers group are a perfect example of how a local organization can make a difference. And the Annette Funicello Research Fund for Neurological Diseases is helping to fund this research and spread awareness. Thanks to both of these groups and all of the volunteers making this happen! And thanks to all the doctors and researchers continuing to study CCSVI. Joan
Dr. Robert Zivadinov