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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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Cece
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PostPosted: Wed Dec 22, 2010 12:52 pm 
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erin, blossom, were you able to get the interview to play?
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erinc14
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PostPosted: Wed Dec 22, 2010 1:16 pm 
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Cece wrote:
erin, blossom, were you able to get the interview to play?
nope :(
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Cece
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PostPosted: Wed Dec 22, 2010 1:25 pm 
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did you try mag00's instructions for disabling the HD part?
http://www.thisisms.com/ftopicp-147610.html#147610

I did a quick search but it's not turning up on any other outlets, just the vimeo one.
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Lyon
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PostPosted: Wed Dec 22, 2010 1:35 pm 
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.


Last edited by Lyon on Sun Nov 20, 2011 4:54 pm, edited 2 times in total.

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scorpion
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PostPosted: Wed Dec 22, 2010 1:41 pm 
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Lyon wrote:
Cece wrote:
did you try mag00's instructions for disabling the HD part?
http://www.thisisms.com/ftopicp-147610.html#147610

I did a quick search but it's not turning up on any other outlets, just the vimeo one.
I wasn't able to get it to play on this old computer so I tried my son's superfast gaming/video computer which did better but still stopped from time to time, but at least was able to watch it.


I couldn't get it to play either.
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erinc14
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PostPosted: Wed Dec 22, 2010 1:49 pm 
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i'll keep trying or get my brother to help me. windows 7 seems to be a problem often :?
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concerned
PostPosted: Wed Dec 22, 2010 2:01 pm 
NHE wrote:

I'm certain that there will be a plethora of papers published on CCSVI. However, if someone has a demonstrable problem with their veins, then why should they not be allowed to get them treated?




NHE


Well if Zivadinov is correct, upwards of 1 in 4 people have a demonstrable problem problem with their veins. Should they all be treated?

NHE wrote:
In addition, where is the "proof" that MS is an autoimmune disease? Nearly all of the journal articles that I've read over the years state that MS is believed to be of autoimmune origin. Moreover, the following statement was just published in a review paper in the journal Neurology...


I have no stakes in MS being of autoimmune origin. My mother has never taken any DMD's and I have absolutely no personal experience with any of that. I don't like big pharmaceutical firms, or big business generally for that matter. I post here because CCSVI and the hype surrounding it has affected my life in a huge way in the past year.
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scorpion
PostPosted: Wed Dec 22, 2010 2:14 pm 
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concerned wrote:
NHE wrote:

I'm certain that there will be a plethora of papers published on CCSVI. However, if someone has a demonstrable problem with their veins, then why should they not be allowed to get them treated?




NHE


Well if Zivadinov is correct, upwards of 1 in 4 people have a demonstrable problem problem with their veins. Should they all be treated?

NHE wrote:
In addition, where is the "proof" that MS is an autoimmune disease? Nearly all of the journal articles that I've read over the years state that MS is believed to be of autoimmune origin. Moreover, the following statement was just published in a review paper in the journal Neurology...


I have no stakes in MS being of autoimmune origin. My mother has never taken any DMD's and I have absolutely no personal experience with any of that. I don't like big pharmaceutical firms, or big business generally for that matter.


Sure concerned. Maybe we should just start calling you pharmacerned??? :wink: You know I am messing with you! So any suggestions how I can get this thing to play on my computer??? Also my two cents on the question about should people be allowed to get their veins treated if there are demonstratable problems is that first we need to prove that having a "different"venuous system is really a problem. I mean we want to make sure connections are not being made where there are none. Ok off to a Christmas party!!
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Cece
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PostPosted: Wed Dec 22, 2010 2:17 pm 
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If you could play the interview, scorpion, Dr. Sclafani does say he sees these vein malformations, "mostly in multiple sclerosis patients," that he doesn't see otherwise....
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scorpion
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PostPosted: Wed Dec 22, 2010 2:33 pm 
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Cece wrote:
If you could play the interview, scorpion, Dr. Sclafani does say he sees these vein malformations, "mostly in multiple sclerosis patients," that he doesn't see otherwise....


Great. Now how about 20 of us go to him for testing(10 of us with MS the other 10 without) and have him tell us which of us have MS and which do not. If he can do that he will have my attention. After that he still needs to prove that the malformations in some way contribute to the worsening of MS but he will at least have the first step out of the way.
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Cece
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PostPosted: Wed Dec 22, 2010 2:52 pm 
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He is not a neurologist, I don't think he will be telling anyone they have MS? He has however been telling people if they have CCSVI or not. The doppler testing is done at King's County Hospital. Perhaps they would need a (grumble) IRB passed before allowing the testing you suggest! Anyway it doesn't seem to be his focus. Perhaps another investigator will try this.
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drsclafani
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PostPosted: Wed Dec 22, 2010 10:38 pm 
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Lyon wrote:
Cece wrote:
did you try mag00's instructions for disabling the HD part?
http://www.thisisms.com/ftopicp-147610.html#147610

I did a quick search but it's not turning up on any other outlets, just the vimeo one.
I wasn't able to get it to play on this old computer so I tried my son's superfast gaming/video computer which did better but still stopped from time to time, but at least was able to watch it.

I appreciate that, like other pro CCSVI'ers, Dr Sclafani admits that we need to use caution and that nothing has been conclusively proven regarding the theory of CCSVI but he ruins it by saying pretty much that venoplasty has shown to be efficacious with acceptable risk so the operation should continue to be performed in the meantime.

One is left wondering...."if venoplasty has shown to be efficacious with acceptable risk, why run clinical trials and if clinical trials haven't been done, how can a responsible person say venoplasy is efficacious with acceptable risk and should be done"??


venooplasty is efficacious and safe. However that is a general term. with respect to ccsvi, there needs to be much work to determine who benefits, how to treat, how to do surveillance, how to handle technical challenges, what if any anticioagulation is necessary, what is the role of stents, i could go on and on

So until these practical matters are addressed, i am saying that a randomized trial is premature.
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drsclafani
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PostPosted: Thu Dec 23, 2010 11:42 am 
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scorpion wrote:
Cece wrote:
If you could play the interview, scorpion, Dr. Sclafani does say he sees these vein malformations, "mostly in multiple sclerosis patients," that he doesn't see otherwise....


Great. Now how about 20 of us go to him for testing(10 of us with MS the other 10 without) and have him tell us which of us have MS and which do not. If he can do that he will have my attention. After that he still needs to prove that the malformations in some way contribute to the worsening of MS but he will at least have the first step out of the way.


are you ready for your angiogram. And how will we pay for this. i am willing to forgo my fee are you willing to put up some of your money?
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garyak
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PostPosted: Thu Dec 23, 2010 5:59 pm 
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I will make popcorn now.
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esta
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PostPosted: Thu Dec 23, 2010 6:23 pm 
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bring it on

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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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