Dr. Zamboni's website

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

Dr. Zamboni's website

Postby Sharon » Fri May 15, 2009 1:10 pm

I have received an email from Dr. Zamboni in answer to my request for access to his presentation at the 2009 Charing Cross Symposium.
I do not think he would mind if I share this information
thank you for the Forum interest in CCSVI. The origin of such a new window open on MS is get back of 8-9 years, or more. We are preparing, thanks to the generousity of Hilarescere Foundation, a web site in order to spread information among people. The address could be http://www.hilarescere.org, there will be links publications materials info etc available for everybody. Everybody will download info at the time in which it may become public. Again thank you very much for your interest,
Regards,
Paolo Zamboni, MD PhD

The website is not up and running yet.

The presentation materials from the syposium will be available through Charing Cross at the end of May. They will notify me when it is available online.

Sharon
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Postby Loobie » Fri May 15, 2009 1:28 pm

Thanks Sharon. I hope the CCSVI express just keeps rolling.
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Postby cheerleader » Fri May 15, 2009 1:37 pm

Thanks for sharing, Sharon!
The Hilarescere Foundation will make its big roll out soon, they're probably coordinating the site's debut to go online around the same time. I'm glad Dr. Zamboni is making reference to the many years of research he'll be sharing with the public in the near future. Woot!
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http://ccsviinms.blogspot.com
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Postby alta » Fri May 15, 2009 1:53 pm

Thanks for sharing Sharon.
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Postby Sharon » Fri May 15, 2009 2:30 pm

I keep wondering what all the neurologists are going to say when this info gets legs and starts moving - and what about the drug companies? :roll:
So many things to rethink!!!!
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Postby peekaboo » Fri May 15, 2009 2:56 pm

this is great! Can't wait for Dr Z to go public! I just wonder how far reaching and fast his information will go...like Sharon said to neuro's ? thats where we all started the MS trail...
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Postby Loobie » Fri May 15, 2009 3:12 pm

I know one neuro that's going to find out real soon as soon as I ask him to fax my records out for my July 13th appt. at Stanford!!!!!!!!!!! :D Big 'ol Woot! I was thinking July was next month (think I was nervous? 8O ) and when I talk to Angela I'm going to try and change it to June, but if it stays July 13 then that's fine too! That's what I get for taking the call in my freaking car on the way home from work and not being at a desk with a calendar! Hoo-wah.
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Postby peekaboo » Fri May 15, 2009 3:23 pm

yippie loobie
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Postby mrhodes40 » Fri May 15, 2009 3:51 pm

I keep wondering what all the neurologists are going to say when this info gets legs and starts moving - and what about the drug companies?
So many things to rethink!!!!


I can almost not imagine it........the millions of dollars in lost drug revenue directly let alone the pipeline. I have a deep sense that there will be a profound sense of shock followed by strong denial that his "can't possibly" be it........... the normal stages of grief and I mean that most soberly and seriously.

The shock we felt at diagnosis I believe will be similar to what they will feel; a profound sense of impossibility and a need to make it go away.

It is going to be very VERY hard for them, which will get in the way of assessing it fairly. I am positive that for some years we will all be encouraged to use both suppressives and be assessed for surgery, as they will not believe in it 100%

for a while I expect a hybrid of the two ideas: CCSVI and autoimmune ideas as some kind of co factors.

look out snarky alert!!----

Shoot it's been decades they've been trying to show an actual autoimmune antigenic target without success but they BELIEVE anyway.......... and that has never stopped them from treating us with suppressives; why would they stop recommending that wonderful super great approach now?? :lol:

sorry I could not help it; that is not at all professional........... :roll:
I can ask forbearance based on unsuccessful suppression in myself. :oops:
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 chrishasms » Fri May 15, 2009 3:51 pm

123
Last edited by chrishasms on Sun Dec 06, 2009 12:44 pm, edited 1 time in total.
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Postby mrhodes40 » Fri May 15, 2009 3:53 pm

ANd wow, how excting is that great hilarescere launch!! Yeah!!

those ahead of the cureve are going to be glad I believe.
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 peekaboo » Fri May 15, 2009 4:02 pm

I bet that Dr Dake will have well over 10 guinea pigs this summer :D
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Postby Sharon » Fri May 15, 2009 8:45 pm

I am glad I am going to Stanford soon - I am afraid that the NIH, the insurance companies, the drug companies, the neurologists are going to try to blockade this research when it becomes more known. IMHO there are going to be many MS'rs out there that will not be able get treatment let alone the tests completed.
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Postby peekaboo » Sat May 16, 2009 8:54 am

Chris wrote
Well I am going to book my travel package tonight. I can't believe I am doing this. I just can't believe it.


Way to go....it is Euphoric isn't it?
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Postby cheerleader » Sat May 16, 2009 9:23 am

Sharon wrote:I am glad I am going to Stanford soon - I am afraid that the NIH, the insurance companies, the drug companies, the neurologists are going to try to blockade this research when it becomes more known. IMHO there are going to be many MS'rs out there that will not be able get treatment let alone the tests completed.


Sharon...I worry about this, as well. However, insurance companies will actually save money in the long run. The MRV is about the same cost as an MRI and can be done at the same time. And an endovascular procedure is expensive, but will keep many other costs of down for patients, especially "symptom management" drugs. I can already see the day when Jeff will no longer need provigil, antidepressants, baclofen, etc. (I won't even mention the immune modulating drugs, because I fear big pharma will try to keep them as standard care, however patients do not have to continue if they choose not to.) Physical therapy costs, hospitalization costs, long term care, disability...all of these costs will be lowered. This is an argument that will appeal to all insurance providers, private and governmental.

Because this is now an international venture- once the research and results are public knowledge- I hope there will be pressure from patients and doctors worldwide to provide care for all MS patients. Medicine must serve the patients...not the doctors and insurance providers. Charitable foundations and universities may be able to help the uninsured. A grassroots effort in the US: lobbying congress and our new first lady (who personally understands the devastation of MS) might turn the tide.

There will be much work ahead, but it's not impossible. Just difficult. Like having MS.
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http://ccsviinms.blogspot.com
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