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Surrey, BC, Canada
DX in '01 with MS; in Jan 02, Told it was PPMS "the good kind" whatever that means.... The progression of my MS has been a long and arduous journey, the last 5 years specifically. I went from complete independance (I drove, went to the mall, movies etc) to the point I am at now. I haven't been to a grocery store in about 3 years (I love grocery shopping), Ikea it has been about 5 years, Costco, at least 5 years - SUCKS!! My DL expired last birthday, and I didn't renew right away for two reasons - I didn't want to drive because of my MS (being responsible) and 2, I couldn't afford the renewal fee (cut my wage by $4 per hour due to the economy, which led to apathy on my part) Married since 1994 to my AMAZING husband, Dan; no kids but we have the freedom to travel - and travel we do!

Tuesday, September 14, 2010

frequently asked questions regarding CCSVI

Here are some of the most frequently asked questions regarding CCSVI and the vascular link to MS. I've reposted them, since we have many new visitors from the NY Times article.
1. What is CCSVI?--
CCSVI is Chronic Cerebrospinal Venous Insufficiency. Some people are born with this--it is caused by truncular venous malformations which impair drainage of the central nervous system. Blood drainage is slowed thru the brain and spine, leading to slowed perfusion, hypoxic injury (low oxygen), reflux of blood, and iron deposition in brain tissue. This process activates the immune system. These venous malformations 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:


Many international doctors are now looking at this condition
2. How do I know if I have it?--
A vascular surgeon or an interventional radiologist is able to test for this condition- since it is a congenital vascular condition which creates neurological symptoms. Here are the testing protocols:

MRV-magnetic resonance venography-

For doppler ultrasound-


The doctors are learning more everyday,

3. Why haven't I heard about this before? 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 that have a vested interest in maintaining the status quo. We are thankful that the NY Times and the Associated Press have reported on CCSVI. Most celebrities with MS have very close relationships with well-known neurologists, and many also 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 seen as a "radical" change in the course of disease diagnosis and treatment. For vascular doctors and those who understand the ramifications of venous congestion in the body, Dr. Zamboni's findings are not radical, but actually make sense.
In Canada-there has (thankfully) been much press. CTV took the lead by producing many news and TV features on CCSVI. There are many Canadian politicians becoming involved, since the government must approve any testing and treatment of CCSVI. In Italy, the head of the CCSVI society is a celebrity. She is the widow of tenor Luciano Pavarotti-and she has brought a good deal of media, attention and fundraising to CCSVI.
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, and there is referred testing and treatment at the Hubbard Foundation in San Diego and testing and treatment at Albany, NY Medical Center. There are many more private doctors testing and treating, and we have learned (the hard way) to keep their names private.
My best advice is to bring the research to your local university vascular departments and to private interventional radiologists and see if you can find someone in your hometown to test you.

There are international sites currently set up for a fee, if patients need to travel. My advice has always been to stay local to your hometown...because treating CCSVI is NOT a one step process. You will need follow up and after care, and return visits to monitor for restenosis. 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. There is a learning curve in detecting and treating jugular and azygos stenosis, and the doctors are working with each other.
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 vascular 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:
Fund the researchers who are looking to diagnose and treat pwMS directly. Skip the middle man. Here is an earlier post--


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 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---work your way backwards...lots of good info

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:
***Eat a heart healthy diet! Lots of good leafy greens, fruits and veggies. Limit saturated fats (like red meat) and stick to lean, white meat protein. Fish is a terrific choice. Stay clear of man made fats and anything the has too many ingredients (like overly processed foods.)

No fructose corn syrup or transfats. Eat a good, whole food diet- like the Best Bet Diet or Dr. Swank's MS Diet.
***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.

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