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Canadian television network CTV tonight aired a 20 minute news report on Dr. Paolo Zamboni and the "Liberation Procedure", a surgical intervention he uses to clear the blocked veins he's consistently found in MS patients. Zamboni has come up with a radical new theory regarding the cause of MS, called CCSVI (Chronic Cerebrospinal Venous Insufficiency), which states that MS is caused, in whole or in part, by the abnormal narrowing of the veins that drain blood from the central nervous system (the jugular and azygous veins). I've previously written about CCSVI in two posts, which contain links to pertinent research and other information, here and here.
The CCSVI theory hypothesizes that the blockages found can cause blood to flow back into the CNS, depositing iron in the brain and spine, which leads to nerve cell damage and death. The body responds to this damage with the immune response that has thus far been the focus of most modern MS research.
The CCSVI theory doesn't address some of the distinctive features of the MS population (geographic distribution, male: female ratios, the existence of MS "clusters", etc.) but could possibly explain much of what has been observed about the disease. Furthermore, the vascular abnormalities seen in CCSVI can be corrected surgically, potentially giving people with MS the hope of a safe and effective treatment.
Please keep in mind that despite the enthusiasm that this theory has generated among MS patients, there is still much to be proven. This can only be done through studies that confirm Dr. Zamboni's findings, some of which are already underway.
The link below will take you to the CTV site that hosts the video news report, broken into two parts. Also included on the page are additional segments featuring Dr. Zamboni being interviewed on various aspects of his findings and results. For MS patients, this is must-see TV...
CTV News The Liberation Treatment: A whole new approach to MS
I think that the neurologist from McMaster university said it best... That if this is procedure that helps only 10% or 20% of patients in the long run, it's still pretty damn exciting.ReplyDelete
Do It Youself CCSVi test:ReplyDelete
My wife had 1 MS like episode, and so by definition doesn't have MS, so far, but is being treated for this "just in case"
I am intersted in quickly determining if this CCSVI thing is real or not. i don;t want to wait two years for academics to finish a study. I don't want to fool myself either though.
When I exercise I get flushed evenly all over, but when she runs, her head turns beat red. This seams to be consistent with this whole CCSVI theory. I am interrested in knowing if this might be an easy do it youself sign that CCSVI is occuring in someone.
So my question to you and any of your MS readers is:
During exercise does your head turn significantly more flushed (redder) than your body?
I just wanted to respond to the question above about the DYI CCSVI test. I have always gotten very flushed in my face during exercise (beet red). I always assumed that it had to do with the fact that I am very fair skinned. Not sure about the science here, but who knows. In any case, I would like to get tested for CCSVI.
Thanks for a very informative and useful post! I will try to spread the word to the ms community here in Norway.
All the best, Ann
Marc, didn't you talk to the NIH about CCSVI and get your jugular veins scanned?ReplyDelete
What became of that?
Anonymous #1-I don't think there are any "do-it-yourself" test for CCSVI. Everybody's physiology is so different that there could be literally hundreds of reasons for why your wife's face gets flushed when she exercises. The only way to determine that stenosis is present is through imaging studies, either CT venography, MRV, or Doppler scans. Even with these sophisticated technologies, it takes a trained technician and a top-notch radiologist to determine whether stenosis is truly present.ReplyDelete
Anonymous #2-I did have a CT venogram that found that my left internal jugular is stenotic. The NIH is currently trying to determine whether or not this is relevant to my condition. They had me do an MRI of my neck to determine whether or not these soft tissue abnormalities might be contributing to the stenosis. I think they're going to order more imaging tests, to determine exactly what's going on in my vascular system. I'm hoping to hear from them this week, will keep everybody updated...
I read your blog often. Thank you.ReplyDelete
I've just written one of my own about all this. I am freaked out and mildly resentful. A little hope is a terrible thing.
With regards to the 'red face' theory... I too, since my teens, have had this reaction to aerobic exercise. I was an accomplished basketball player and it was so pronounced that my coaches worried. I am 51 now and was diagnosed 18 months ago. Just sayin'.....ReplyDelete
I agree that we should be careful with the 'do it yourself' diagnosis method BUT.. how many of us have tried to share our symptomatic experiences with our doctors only to have them fall on deaf ears as they did not fall into the auto-immune/ CNS profile? We can not sit back and wait..letters, e-mails, phone calls... even if this only helps 1% of us.. that is 25,000 people!!!
Hi, I love your blog. I, too have ms and will be speaking with my doctor on Monday to see if I can get CCSVI treatment here in Florida (I live in West Palm Beach). I'm not surprised that the MS Society is not being supportive. I've been in a wheelchair for 20 years, just had my fifth book published (go to YouTube "The Self-Empowered Woman"), but (like Dr. Zamboni) was ignored.ReplyDelete
Keep up the good work!
Ms for 10 years, forget the ms society, email me we are organizing. If your doctor doesn't want to help or look into it, get rid of him. we have a paln to hire our own doctor's and train them.ReplyDelete
My wife has MS.We had a requesition from her neurologist to do MRI at Sunnybrook and they refused because there is a study underway.We will have to go to the states to get what is required.We can,t wait for this disease to progress any further.If anyone knows of a hospital or doctor that will perform this test , please let us know. firstname.lastname@example.orgReplyDelete
I have had ms for 25 years and I too am interested in finding a hospital or doctor that will do this test. Please let me know. email@example.comReplyDelete
Marc: IDM , IDM , IDM , with me had the sme procedure, use a pill to make the blood thinner PLAVIX and a pill of Ecotrin. So far so good. I'm not worrying much. Yesterday had my app. with the Neurologist nothing new a total waste of time.ReplyDelete
He told me that shortly MEDICAL marijuana will be legalized for the spasticity (I have to take at least 6 pills sometimes more Baclofen. So will see.
Have a tranquil rest and enjoy the simple pleasures of life, you and I are very lucky have wonderful wives. Hugs
Just to respond about the red face question. Yes my entire turn red when any excersion is done and Yes I have CCSVI also No this did not always happen to me I was very active as a child and into my 20 up to 30ish but when I was about 32 my face and neck would become so red people would ask me about it. My doc says it is nothing but I often thought the same thing you are thinking maybe it is a sign. Thanks for asking.ReplyDelete
This method used by the Dr. Paolo Zamboni is really astounding, because by this way he has achieved to rescue a lot of people around the world who were close to die.ReplyDelete
I hope another doctors start to use this method in a close future.
Hi. My name is Kelly. Did your insurance pay for any of the testing you had related to possible ccsvi?ReplyDelete
Hi Kelly-insurance did pay for my testing and subsequent attempted CCSVI treatment. Not sure what's going to happen the second time around. Also, if you want to ask me a question directly, the best way is to e-mail me at WheelchairKamikaze@gmail.com, especially when commenting on older posts such as this one.ReplyDelete