Last Updated on December 12, 2023 by Cathy
NOTE: This is an article I wrote after I had the Chronic Cerebrospinal Venous Insufficiency (CCSVI) procedure back in 2010. I saw a lot of amazing improvements in patients including myself. However, neurologists dismiss any connection between CCSVI and MS because they believe MS is purely a neurological disease. Claiming it is not safe for people with MS, although cardiologists perform angioplasty thousands of times a day across the U.S. for heart patients.
Immediately after the procedure, I was able to lift my left leg which I wasn’t able to do before the procedure. A couple of years later I started going through extreme daily stress which caused my gait to get worse.
Staying stress-free, eating right, avoiding processed foods, and exercising is the way to stay healthy and reverse the effects of MS.
Some of the contacts below may no longer be valid.
Chronic Cerebrospinal Venous Insufficiency (CCSVI – It’s Vascular)
This is a picture of me from the Arizona Heart Institute when I had Chronic Cerebrospinal Venous Insufficiency (CCSVI). This is my left jugular vein with a blockage. You can see where the vein compresses and the blood quits flowing just above a valve.
My cardiologist said my vein was 90% blocked, he also found a 50% blockage in my upper left vein and an 80% blockage in my right azygos vein.
What Is CCSVI?
CCSVI is the reflux of blood in the veins from the brain and spine found in MS patients tested worldwide. The blockage prevents blood from flowing away from the brain causing iron build-up. The more iron deposed in the brain, the more disability, and the more progressive MS is.
Who Discovered This?
In the 1800’s MS doctors thought MS was a vascular disease. Dr. Putnam was at the center of this theory until the 1940s, MS then became an autoimmune disease. After decades, doctors couldn’t figure out what caused the immune system to activate. A doctor in the 1980s discovered the connection of MS being vascular, no one listened until now. Thanks to the internet and patients.
Zamboni?
Dr. Zamboni from Italy went back into the history of MS to help his wife. This is when he discovered the vascular connection. He did an angioplasty on his wife and then did a small study and found 100% of MS patients had a blockage in their veins. My Hero (Joan) discovered Zamboni’s work and pushed to find a doctor in the US, Dr. Dake from San Fransisco.
Dr. Dake scanned and stented the veins in her husband in May 2009, with success. He then started helping other patients, unfortunately, 1 patient had a stent migrate to his heart and had to have emergency heart surgery. A 2nd patient was already on blood thinners for another condition and after having the stent placed she later died.
Nay-sayers try to say it was due to the procedure that killed her, but doctors and her family say it was her other illness. Dr. Dake was then shut down. It’s been a struggle to find other doctors to help and to keep them from getting shut down by the IRB (Institutional Review Board).
Everyone went underground not giving out doctor names unless we “Private Messaged” each other. That’s how I found the clinic I’m going to. There are now a few clinics in the States who are IRB-approved and it’s OK to mention their names.
The Struggle
Neurologists are against this, my neurologist told me I was “wishful thinking”. This is vascular (plumbing) don’t go to your neurologist (electrician) unless he/she is willing to help you. I contacted every radiologist, vascular surgeon, radiologist, and research group to no avail. I was always told “No”… or “Wait for the Trials”.
CBS did a news story in January interviewing Joan Beal (the wife of the first U.S. patient) but was not allowed to air it. You can find Joan’s non-profit organization’s website here: CCSVI Alliance.
Pharmaceutical companies are looking into losing billions of dollars. Including neurologists who get kickbacks for pushing their drugs. The UK had many news stories in June 2010 on the “MS drug fiasco”, drug companies lied about their numbers.
For many patients, it “failed to delay the onset and may even have hastened it” – click here for the link. Many pwMS (people with MS) have decided to stay on their drugs, I had already stopped back in 2004. It was making me worse, I’ve been on an MS diet (which is also a vascular healthy diet).
NMSS gave a research grant in June 2010, except for vascular doctors. In the US – only members of the board received grants.
In Canada, Dr. Freedman (neurologist), who announced “CCSVI is a hoax” received funds. Canada has decided not to fund CCSVI.
The Good News
There are now countries that are helping every MS patient in their country. Countries such as Kuwait, Jordan, Italy. Fortunately, my family doctor has been wonderful and is helping me with my “Liberation”. I found one local vascular surgeon who said he would be my follow-up doctor when I get back.
Stay Local
There are clinics worldwide from Poland to Mexico. Many people have been leaving the States to get “Liberated”. Unfortunately, close to 50% of re-stenosis collapse, and have to go back to see their doctor. Leaving the country also makes it harder to go for follow-up doctor visits.
Facts
This is not a cure it only helps stop the progression of MS. For the majority of people, they have improvements in their symptoms. Some people do not benefit, they have no changes or even get worse. This is new and there have not been enough studies to give true numbers. Everyone has to decide what’s best for themselves.
My Favorite Websites
Joan wanted to continue to help other pwMS so she started this Facebook page. Check the note section, lots of good info. Click here for an easier way to read them. There is a non-profit organization to help raise money for CCSVI research.
This Is MS
MS-MRI
You can join these groups for different locations here.
Check out YouTube for CCSVI and see the many, many successful videos.
Where To Go in the U.S.
Earlier in the year, MOST pwMS were leaving the country to get help. Finally, doctors in the States are catching on. There is a small number of doctors who are now helping, most are still “underground”.
Dr. Dake is getting ready to do a study in San Francisco. (Studies are free and sometimes travel is also paid.) – No longer valid.
Dr. Andrews in Seattle has been IRB-approved.
Hubbard Foundation in San Diego.
I’m going to – Lifeguard VIP, they bought out Arizona Heart Institute there is no website yet. Contact: LifeGuard, some clinics are now accepting insurance. If you’re lucky some insurance companies are paying 100%. – AHI claimed bankruptcy shortly after my procedure and may no longer do this.
Update:
UPDATE 9/2/2010 – HUBBARD FOUNDATION IS NOW IRB-APPROVED NATIONWIDE! This means doctors around the country can use them to do the procedure in their hometowns.
9/11/2010 – Hubbard Foundation scanned someone with Parkinson’s Disease. And they have CCSVI.
9/16/2010 – Hubbard Foundation scanned someone with migraines, they have CCSVI. In a few weeks, they will be testing someone with ALS. – This is getting exciting!
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