Barre google de traduction indispensable!
1. What is CCSVI?--
CCSVI is Chronic Cerebrospinal Venous Insufficiency. Some people are born with this--it is caused by truncular venous malformations. Blood drainage is slowed thru the brain and spine, leading to slowed perfusion, hypoxic injury (low oxygen) and iron deposition in brain tissue. It gets worse as the body ages. Dr. Zamboni discovered this process in the internal jugular veins and azygos veins in 100% of people with MS and named it. Here are all of his research papers:
Here are other supporting papers:
2. How do I know if I have it?--
Here are the testing protocols:
The doctors are learning more everyday,
3. Why isn't this all over the news? Why aren't there celebrities talking about this?
In the US, most of our media outlets are run by large international corporations who have a vested interest in maintaining the status quo. Most celebrities have very close relationships to their neurologists, and many celebrities have sponsorship dealings with disease modifying drug companies. Because CCSVI is seen as an entirely different way of looking at MS, and the diagnosis and treatment involves vascular doctors rather than neurologists, it is viewed as a threat to the status quo. Do not expect celebrities of US media to report on this story anytime soon.
We do not need to worry about finding celebrities. They will learn about CCSVI on their own. We need to worry about bringing the research to more doctors. Take the research papers to vascular surgeons and interventional radiologists.
4. Where can I get tested and treated?
In the US, there are currently a few locations able to test and potentially treat:
Studies are ongoing at Georgetown University and Buffalo Neuroimaging Analysis Center
Referred testing at the Hubbard Foundation in San Diego and testing and treatment at Albany, NY Medical Center
Bring the research to your local university and interventional radiologists and see if you can find someone in your hometown to test you.
There are international sites currently set up. My advice has always been to stay local to your home...because treating CCSVI is NOT a one step process. You will need follow up and after care, and return visits to monitor for restenosis. My husband has been to Stanford 4 times since his procedure last year. Can you afford to go overseas four times in one year? The doctors that are working with Dr. Zamboni and corresponding with him and each other are Dr. Simka in Poland, Dr. Sinan in Kuwait, Dr. Vogl in Frankfurt, Dr. McDonald in Canada, Dr. Sclafani in NY and others.
5. What can I do to help myself and others?
a. Please print out the research papers and get them to doctors. Take them to your general doctor. Take them to local universities. Take them to interventional radiologists. These are the people who will study CCSVI and write and publish in peer reviewed journals. We need research papers. We do not need Oprah, Montel, Annette, Neil Cavuto, Richard Cohen, or any other celebrities or people with MS. We need practicing and publishing doctors. If you do one thing, do this---print out the papers and take them to doctors.
b. Fund CCSVI research. The doctors studying and treating CCSVI have no help from the government or the MS Societies. They need us to help them raise money. Here are places ready to take your fund raising ideas and energy:
(Please add below if I have missed any researchers, and I will amend this note)
Here's the Hamilton info---GREAT press:
Here's info on the MStery parties to fund BNAC research (thanks to the Nolans)
Here is the Blocked Veins Research Group in Canada---extremely active group:
c. Learn how to speak CCSVI---understand the science behind Dr. Zamboni's discovery. Read the notes (you can print them out) and learn why a it is necessary to go thru ALL of the differential diagnoses BEFORE a neurologist can claim you have MS. Vascular disease is a differential diagnosis. Learn what compassionate treatment means, and see if you qualify. Read the links to the research papers. Read Dr. Schelling's writings. See why this discovery is not new, but merely 150 years old. Learn why EAE in mice is NOT MS in people.
Here are the notes starting on the last page---
d. Find a local CCSVI group--look on Facebook, on the internet. If you have a local group, please post below. Find your friends and neighbors looking into CCSVI research, diagnosis and treatment. Learn about local protests, activities, fundraisers....reach out into your community and find new friends. Go Local!
e. Your personal experience is YOUR POWER. Talk to local reporters, share your stories with each other online and in person. Make videos, write songs, host fundraising events, design t-shirts, get creative. Reach out to other MS patients. Share the information with them. No one needs to "convert" anyone into believing about CCSVI (please don't get into arguments on NMMS pages) ...it's just about sharing knowledge. People may or may not be interested. That's their choice. Your choice is how you share this information.
f. TAKE CARE OF YOUR HEALTH NOW--even before CCSVI testing and treatment, there are many things you can do to live a vein healthy life:
***Move as much as you are able. Exercise- whether it is a stationary bike, seated exercise, water aerobics or yoga- is good for your circulatory system and will keep blood flowing.
***Try to limit stress. Cortisol, the hormone released when we stress out, closes down blood vessels (called vasoconstriction) Prayer and meditation can really help. Laughter actually opens blood vessels up! Try to find joy everyday...with your children, pets, funny movies, good books.
***Alcohol is OK...but only small amounts. A glass of wine opens up blood vessels a bit...but any more than one drink becomes constrictive.
***Get some sun on your face. Vitamin D helps the body utilize oxygen and is a vasodilator. If you have no sun in your area, try a sun lamp and take a vitamin D supplement.
***No more smoking. Sorry. Cigarettes are vasoconstrictors- they close up blood vessels and can make stenosis worse, That's why we've seen so much about smoking and MS in the news lately. Cigarettes actually slow down the immune system...so you'd think they'd be good for MS, if MS was autoimmune! But cigarettes are linked to MS progression. In the CCSVI paradigm, that's because they inhibit good blood flow.
***Look into inclined bed therapy. Raise the head of your bed about 4-6 inches. Use a 2x4 board underneath the head of the bed. The jugular veins are the only exit route for blood from the brain back to the heart when we lie down flat. If you sleep tilted up a bit, your vertebral veins can help out. Don't use pillows, this will crimp your neck. Use a board under the bed. It may take a few nights to get used to, but we've been doing it for awhile.
Andrew Fletcher has a thread on ThisIsMS on Inclined Bed Therapy-
***For more information, and to read the science and research behind all this, check out my Endothelial Health program I made up for Jeff- link below. Lots of these things are common sense and part of an overall healthy lifestyle....but it's always good to understand the science behind it.
hope these help-
Worth the Repost!! Multiple Sclerosis Tied to Iron in Brain Studies Point to Cause, Location of MS Brain Damage
Videos from the CCSVI Liberation Day Rally on Parliament Hill in Ottawa September 20 2010.
As more videos are found, i will keep updating this note.
Patrick Farrell YouTubes:
False Creek Healthcare in Vancouver BC received IRB approval to start their CCSVI / MS “Flow Quantification Study”
Dr. Mark Godley said: “Recently, there has been some controversy about vein blockage in patients with MS. This study is to provide the groundwork to help see if there really are differences in MS vs. normal people.”
The study is funded by the False Creek Healthcare Centre. It is not part of the Hubbard National IRB.
This is a huge first step to prove the existence of CCSVI, to help tear down roadblocks. Their first study will create an important foundation to help move us a giant step closer to having full access to CCSVI treatment in Canada.
They will be seeking volunteers right away. Your total time commitment for the simple blood test and MRI will be about 3-hours.
I was just talking to Dr. Godley, and he said things will start moving fast.
More details to follow soon on their websites.