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CCSVI is ineffective, this is according to the doctor, Dr. Zamboni's, own research. This once promising treatment for multiple sclerosis simply doesn't work. Dr Zamboni came to this conclusion after doing a double blind study to rule out the placebo effect, and found that the procedure does not cure or even help with the symptoms of MS.
Unfortunately, so many of us effected by multiple sclerosis, were counting on this simple procedure to work - at least a little bit. The seemingly miraculous experiences for some were more likely the result of wishful thinking or the placebo effect. We wanted it to work, so it kinda did, for a little while. The effects didn't last, however.
All the people who spent thousands of dollars, traveled thousands of miles, spent many hours, all in the hopes that this would be the one thing that "cured" their MS, are left with a treatment that doesn't really help them.
Many scientists and researchers stopped other more promising studies to try and prove Dr. Zamboni's theory (you can read about the procedure here). The hours they could have been following those other studies were wasted on an unproven treatment. Dr Zamboni has now published a paper in the JAMA (Journal of the American Medical Association) conceding that "Venous PTA has proven to be a safe but largely ineffective technique; the treatment cannot be recommended in patients with MS."
I think we can speak for many MSers, that we hoped that this would be a treatment that solved the mystery of what caused multiple sclerosis and ultimately eradicated it. It's turned out to be one that we can confidently and disappointingly say that no, it is not a treatment for MS. Check that box off.
I'm a little sad that it didn't work, because I think Dr. Zamboni was sincere in his wish to heal his wife of this devastating condition. If only it were that simple. Open up your veins and all is well - and as a result you continuously improve from day to day. I guess it was one of those "too good to be true" moments.
I have to admit, we considered trying to get the procedure done for Cir, however, because of financial reasons, we weren't able to - and as it turns out, that was a good thing. The article snippet below suggests that many doctor patient relationships were fractured as a result of the "liberation treatment".
Doctors suggested that patients wait for more research to be done, and patients were impatient to finally have something that appeared to work, accused their doctors of not wanting to help. We did talk to our doctor and he was interested but not impressed, letting us know that he thought CCSVI is ineffective. We have a good relationship and knew we couldn't get it done anyway, so we waited to see what would happen.
"Many of those same neurologists, though, saw their relationships with their patients fractured as belief in the liberation therapy took hold in the community of patients and their families in Canada, parts of the United States, and farther afield. Doctors advising caution against a procedure that hadn’t been proved to work or even to be safe were derided as standing in the way of innovation to protect their own practices."
Cir and I would love to see a cure, and I'm sure many others feel the same. I do think, though, that we will be a little skeptical when we hear the next treatment that comes along. We'll at least wait to see what happens. It's so easy to pick up on the hope that something like this will come along. In this day of social media, it's also easy to get scammed when people will put anything out there just to make a buck.
I don't believe Zamboni did that. I just think he shouldn't have rushed his findings to the public without doing more research to prove his theory. We want a cure, however, we also don't want to be taken advantage of either. I hope other scientists a researchers take this into account before making claims that are not fully proven.
What do you think? Do you still feel that CCSVI is ineffective or do you still think it's a viable option?
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Cir & Akrista
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