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CCSVI
CCSVI or chronic cerebro-spinal venous insufficiency was coined by Dr. Paolo Zamboni, Director of the Centre for Vascular Diseases at the University of Ferrara in Ferrara, Italy. Basically it is a condition where your venous (veins) system is not able to remove the oxygen-poor blood from your central nervous system or CNS.
The syndrome usually happens in the jugular veins, both internal and external. It can also happen in the azygos vein.
What happens exactly?
Dr. Zamboni found that in all of the MS patients he tested, these veins were malformed in some way. There was either a blockage, stricture, or a problem with the valves not operating properly.
This is not to say that all MSers will have this condition. But according to Dr. Zamboni's small trial, there are definitely a significant number of MSers who share this possible cause of multiple sclerosis. Is this a coincidence? I don't know.
Dr. Zamboni was able to see the vein problems using doppler sonography. He saw, in particular, something called venous reflux, where blood flow from the brain actually went backwards. This caused “bad” blood to be pushed back into the brain. As you can imagine, this is not a good thing.
What happens as a result of this condition?
As a result, there are several things that can happen. One, a condition called hypoxia, is when the body is deprived of oxygen. In this case, the brain, or cerebral hypoxia. This can result in cognitive disturbances and decreased motor control.
Another thing that can happen as a result of this are increased iron deposits in the brain. This accumulation of iron in the brain tissue is thought to be the reason for the little white spots which show up in MSers. Something that every one with multiple sclerosis knows about so well.
And unfortunately, there has been a recent update about this treatment. Dr. Zambino - after doing more research - has found that CCSVI is ineffective for treating MS.
Can CCSVI be treated?
According to Dr. Zamboni, it can and he has. He's been able to treat several patients with multiple sclerosis, including his wife.
His wife, Elena Ravalli, is the inspiration and reason behind why he started research in to the cause of MS. CCSVI is the result of that research. His labor of love may be what some see are the beginnings of finding a cure for many who suffer with debilitating symptoms of multiple sclerosis.
The Liberation Treatment
After testing his wife and several other people with MS, he and the other doctors on his team came up with a procedure to open up the veins. They call the operation The Liberation Treatment.
The simple operation is similar to angioplasty in that a balloon is threaded up through the veins. When it reaches the blockage or stenosis, it is inflated. This causes the area to widen and allow normal blood flow to begin.
Of course, with any operation, there are risks. For the small number of patients who have had the procedure done, results are very favorable. His wife had the operation three years ago (as of 2009) and she has not had a relapse since then. She is in what you might call a permanent remission.
Several other MSers who had the treatment are also relapse free and their symptoms have been reduced as well. Some report great improvement almost immediately if they suffered from fatigue and brain fog.
Some still skeptical
There are many neurologists who are skeptical about CCSVI being the “cause” of MS that has eluded everyone for so long. The MS Society of Canada and the one in the US have encouraged patients to not have testing or treatment for the condition. They say that there is not enough evidence yet to say that this is a cause.
Many MSers are not listening to this advice, however, and are searching out doctors who are interested in the findings and who might perform the procedure on them. Dr. Dake, who is Chief of Cardiovascular and Interventional Radiology at Stanford University School Of Medicine in Stanford, California, has been doing testing as well as performing the operation for people with multiple sclerosis. The results have been nothing short of promising.
If you want to read about people who have undergone the procedure under Dr. Dake's care, check out the “This is MS” site. They are tracking the progress of MSers who are currently being treated.
And here's a link to the Facebook fan club for CCSVI. (Clicking link will open a new window). We're keeping a close eye on the developments.
If it sounds like we are hoping that this treatment will work, then you guessed right. We're not doctors, of course, but we still have hope that one day there will be a cure for MS. And if this is the cause of even a small number of people with this disease, then it should be explored.
Who's doing it and where?
The studies are continuing in several places. Here are just a few:
- Paolo Zamboni
Director of the Centre for Vascular Diseases, University of Ferrara, Ferrara (ITA), He discovered and described this condition in MS patients in Italy. - Dr. Michael Dake
Chief of Cardiovascular and Interventional Radiology, Stanford University School Of Medicine in Stanford, CA (USA)
He was the first surgeon to accept Prof. Paolo Zamboni’s suggestion to operate on stenosis associated with CCSVI - Dr. John Cooke, MD, PHD,
Professor of cardiovascular medicine, Stanford University School of Medicine - Robert Zivadinov
Director of the Buffalo Neuroimaging Analysis Center, New York State University, Buffalo (USA)
One of the greatest experts in pharmacological trials for multiple sclerosis and efficacy measures using MRI.
~from This is MS
For a more complete list, go to the This is MS Forums. (clicking here will open a new window).We'd also love it if you use the form below to let us know what you think about this promising study. Sharing your experiences will help others decide if this might be a possible treatment for them, as well.
Here are a few questions you might consider addressing in your submission. You can answer them all - that would be great. Or just the ones you feel comfortable answering - that's okay, too.
- Did you get the treatment?
- Where did you get it?
- Who did your treatment?
- Do you feel that it was a success?
- What types of improvements have you seen?
- How long after treatment did these improvements occur?
I'm sure you can probably think of several more We're excited to see more about this treatment – are you?!
Have You Tried CCSVI for Your MS? Would You Like to Try it?
Share your CCSVI story for treating your multiple sclerosis here. How has it helped you or how do you feel it will help you?
Share your story, tips, and advice about CCSVI with other MSers here. Or talk about why you think it should be available for people with MS.
<-----Go from CCSVI - Part 1 back to New Cause of MS
<-----Go from CCSVI to What Causes MS
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