Harry Z continued.......

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

Postby Lyon » Mon Feb 01, 2010 4:29 pm

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Postby MS_mama » Mon Feb 01, 2010 5:56 pm

Lyon, you ask what is the "science" of CCSVI, and you mention a few points. However you haven't touched upon the study in which people with MS had the procedure done and had some reduction in disease activity. Granted, there are some flaws with that study, but to simply ignore the data that the study provides because of the flaws would be disingenuous.

To be fair I think we can say that there is some limited evidence that CCSVI intervention *may* alleviate some symptoms of MS, and it *may* (although the evidence is more shaky on this one) affect the course of the illness itself. This based on Zamboni's study of the people who underwent the Liberation procedure.

Obviously we need some more concrete evidence and I for one am not opposed to placebo trials. It's not "unethical" to deny people *in a trial* surgery for CCSVI because people signing up for the trial will have full informed consent and will only sign up with the knowledge that they may have a sham procedure. It's part of the whole scientific process. And I'm trying to find the reference but apparently there were some surgical procedures that, in the past were pushed through because it was considered unethical to deny them to people, and therefore placebo trials were not conducted. When the placebo trials were finally done, these surgical procedures were stopped because it was found that they were not more effective than placebo, and furthermore, exposed patients to risks.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby Lyon » Mon Feb 01, 2010 6:27 pm

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Postby shye » Mon Feb 01, 2010 6:29 pm

I think MSHusband says it best

CCSVI is a condition all its own irregardless of MS that SHOULD BE TREATED as it is found. YES, it may have a high correlation to MS ... and may actually be the cause of MS. But it is, for all intents and purposes right now separate


All we have to do is get tested properly, and if stenosed, get angioplasty (and stents if needed). This is a procedure already being done in persons without MS, check any of your teaching hospitals if you want confirmation.

Then some one (such as this site) has to keep tabs on who with MS had procedure, for what reason, and then keep tabs on how procedure helped/did not help the MS.

So it is just acess to interventional radiologists familiar with the CCSVI protocol that is in our way--and it appears many on this site are overcoming that obstacle.

I think we are fortunate that Zamboni made the connection with MS--but I see no reason if you want the procecure not to get it IF you indeed are stenosed; having MS is NOT criteria for having the procedure-having stenosed veins is. The correlation can come later.
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Postby robbie » Mon Feb 01, 2010 6:57 pm

Lyon is your wife curious at all whether she has CCSVI?
Had ms for over 19 years now.
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Postby Lyon » Mon Feb 01, 2010 7:08 pm

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Postby CureIous » Mon Feb 01, 2010 7:12 pm

We've been having this same conversation in differing shades of grey since I came here last July. Then there's always the inevitable "more research/testing is needed". That's covered too. It reminds me of reporters, who grill politicians say, then getting the "no comment" answer, ask the question slightly different, only to hear the same answer. Won't be long now and we'll be talking turkey when results from real studies start to trickle in... And I once again, will eat my hat and those around me if they have them, if there's "100% correlation" found. In fact we should have a pool, just like Monday Night Football, what is the % going to be??? I say 87.569 just to sound smart and not 88%.

:)

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby jr5646 » Mon Feb 01, 2010 8:16 pm

Mark > my vote is 98.9999999% correlation - hahaha The remaining folks are now considered misdiagnosed and do not have MS...

Let me digress for a sec. - I truly believe they will have a future entry in the DSM IV for those folks addicted to forums - esp. for ones who like to hear themselves talk.. err - I mean type. LOL We'll have to witness arguing over the data next.. geez - no "further" comment
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Postby CureIous » Mon Feb 01, 2010 8:41 pm

jr5646 wrote:Mark > my vote is 98.9999999% correlation - hahaha The remaining folks are now considered misdiagnosed and do not have MS...

Let me digress for a sec. - I truly believe they will have a future entry in the DSM IV for those folks addicted to forums - esp. for ones who like to hear themselves talk.. err - I mean type. LOL We'll have to witness arguing over the data next.. geez - no "further" comment


Be very very careful, from what I understand, stuff happens on the internet when we are asleep, unconfirmed at this point ;)
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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