CCSVI Losing steam?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI Losing steam?

Postby Bruce11940 » Mon May 17, 2010 10:25 am

After I put my girls to bed at night,I usually spend a couple of hours browsing the web looking for info on ms. I read about new treatments, therapies, etc.

Recently, CCSVI seems to have exploded onto the scene. I became really excited reading the blogs and watching you-tube videos of all the people who have had corrective procedures done.

Recently though, it seems people are backing off the rhetoric.

Is the CCSVI rocket crashing back down to earth or, if you'll permit me to extend the metaphor, can it now assume a low earth orbit.

Believe me...no one wants this to work more that me but I may be setting myself up for major disappointment if this fizzles out.

Anyone share these concerns?
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Postby lumpc1 » Mon May 17, 2010 10:52 am

i do not share these concern as it is the real deal i very high #'s. I had a M/C wreak in 1985, two months later I had MS extreme whiplash, in my case I am certain this applies and I am running out of time as I see it. I think it is gaining all the time.
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Postby BooBear » Mon May 17, 2010 11:59 am

Bruce, I can empathize with your caution. I would encourage you to read all the papers, links, and user input you see on this site.

I have done quite a bit of independent research as well. I will tell you that I have seen definite similarities with other iron- based brain diseases and MS- some of the symptoms are idential. Also, if you are familiar with the Swank diet (which bans red meat for the first year), you will see that people did feel better (myself included- I was on it for two years and have just resumed again)- could it be because you are taking less iron in (and therefore less to remain in the brain due to the reflux?)?

At the end of the day, people are getting the treatment and seeing real results. Real, tangible results. I have not had any real results yet dispite a myriad of treatments, so I figure I can't go wrong here. Besides, if I have blocked veins responsible for draining blood out of a major organ, I think it is a good idea to get that fixed anyway, right? How can it be a bad thing?

Keep reading, keep believing, keep speaking. The more of us that talk, the harder it will be to shut us all up.
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Postby sbr487 » Mon May 17, 2010 12:05 pm

I have posted Dr. Swank's link on the other thread. It looks as if Dr had inkling of the blood flow issue and directed his treatment in that direction.
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Postby jackiejay » Mon May 17, 2010 2:55 pm

yes, Bruce...I've noticed the same thing as you.......maybe it's the lull before the storm, so to speak....hope that's what it is....
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Postby 1eye » Mon May 17, 2010 3:03 pm

nope, it's full speed ahead
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Hope66 » Mon May 17, 2010 3:40 pm

jackiejay wrote:yes, Bruce...I've noticed the same thing as you.......maybe it's the lull before the storm, so to speak....hope that's what it is....


That's what I'm hoping for too J...but I'm in Canada so it's been pretty much full steam ahead here...at least in terms of people who have some power talking about it, debating it etc.

I do wonder what the "tipping point" will be (to borrow a concept from Malcolm Gladwell).

Be well,
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Postby Cece » Mon May 17, 2010 3:54 pm

Hope66 wrote:That's what I'm hoping for too J...but I'm in Canada so it's been pretty much full steam ahead here...at least in terms of people who have some power talking about it, debating it etc.

I do wonder what the "tipping point" will be (to borrow a concept from Malcolm Gladwell).

I find it's exciting to be in on the ground floor of what could be such a transformative discovery. I first heard about ccsvi it November and came onboard in January and even in that short time there has been much progress!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby ndwannabe » Mon May 17, 2010 5:09 pm

Cece wrote:I find it's exciting to be in on the ground floor of what could be such a transformative discovery. I first heard about ccsvi it November and came onboard in January and even in that short time there has been much progress!

Same here! I even don't mind being a ginnea pig :lol:
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Postby thornyrose76 » Mon May 17, 2010 6:30 pm

If the theory is hogwash why are people that have had the treatment, that have noticeable mobility problems, remarkably better some 24 hours after having the procedure? These are peoplle that have posted the before and after footage online, there aren't many mind you but nonetheless there there. It's impossible to fake it, if you've had issue with your mobility you cn easily pick up on the fact that it's legitimate, the improvements. check 9gabbycats on youtube, and there is another, a blog, the link is found thru thisisms-before and after footage.
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Postby jackiejay » Mon May 17, 2010 6:46 pm

I don't think it is hogwash at all. In fact from what we know already, it seems to make perfect sense and there is a definite link to MS. I think we are just sort of in limbo while more facts (studies,etc.) and protocols are in place before CCSVI testing and treatments are the norm. I think that there is definite hope for that to happen in Canada....just going to take a bit of time...which can be very frustrating.
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Postby Billmeik » Mon May 17, 2010 7:23 pm

Im getting the treatment but my logic is still based on putnam from 1936 and could easily be proven untrue. I believe if you clamp the veins on animals they'll get ms but with each passing day and no report I wonder...
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Postby Cece » Mon May 17, 2010 7:33 pm

Billmeik, do you know of any doctors doing the animal research? It really ought to be done.
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Postby cah » Mon May 17, 2010 8:38 pm

If you think that CCSVI looses steam or if you're in need of new brain food, look at the transscript of the workshop that Dr. Zamboni held on April 24:

http://csvi-ms.net/files/sardinia_ws_20100424.pdf

Dr. Zamboni et al describe what's going on now and there are quite a few interesting things in it, such as:

Dr. Zamboni wrote:I have found something very interesting that the institute that proposed the interferon and had the curiosity to see that, aside for the immunomodulators factor, there is also a vascular one and neurologists have always had the idea that there is this vascular aspect, so I think they are ready to understand this.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby Liber8 » Mon May 17, 2010 8:55 pm

I think a lot of us forget of the # of people in the medical community that have friends and family that have had this done. Even Drs have had it. And look at the Tracking Thread. I am not saying that everyone should have this done, but I have had this disease for over 16 years and this makes the most sense out of anything I have seen along the way. I didnt jump at the questionable therapies along the way. It took me about 12 hours of research on my computer to realize (at least in my mind) that this is very very promising.

I hope the best for you all in your journey and hope to see you on the Tracking Thread.
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