Controversy continues to surround MS liberation treatment

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

Postby Cece » Sat Dec 11, 2010 9:31 am

Anecdotally I'd say we hear the most stories from people who had benefits but lost them; then next we hear from people who had lasting benefits; then least we hear from people who had no benefits or have since continued to progress. That last group is smaller than the others but it is a matter of great concern to me.
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Postby Lyon » Sat Dec 11, 2010 9:41 am

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Postby Loobie » Sat Dec 11, 2010 10:02 am

CCSVI just needs to be studied and tracked and we can all bloviate all we want until results are published. I agree with a lot of the stuff on here. I was one of the first on this board to have it done with a case of semi-advanced MS (not the first by any means, Marie et al take that prize). I most definitely saw improvements during the first six months. I really don't see anymore active improvements but some of the improvements are still with me as evidenced by the fact that I don't need my cane anymore.

However, despite having wide open jugulars, I have still gotten weaker in my legs despite an exercise regimen that is part my own and part supervised by my MS physical therapist.

I mean if the improvements would have continued, there's no way I'd have retired; butd I did. But it does feel different now. Progression doesn't seem to be as fast as it was that's for sure. I am almost of the mindset that the CCSVI procedure most definitely did beneficial things to my own disease in terms of how it was progressing and all of that. So it's almost like we eliminated the CCSVI issue, it helped certain things that the CCSVI was obviously aggravating, but now I still do have MS and MS progression. It's just not in the areas that were aggravated by clogged jugular veins. It's obvious to me that maybe it really helped my balance out, but did nothing for what is making my legs get weaker and have less endurance. It helped with the severity of my dizziness, but didn't eliminate it completely.

Bottom line is I'm glad to have done it to be in the camp of leaving no stone unturned; and it did give me benefits I feel I wouldn't have had had I not done it. I just don't think we really know what's under that particular stone with any kind of definity.

Just like the CRABs, this procedure really helps people new to the disease. Can I get an extremely large DUH here? Bottom line is, scientifically, we still don't know shit about what it really does. We still can't draw a definitive correlation between fixing it and what it really does medically. We only know people feel better and when living every single GD day with MS, that's enough to get on a plane, spend a bunch of money and get passionate about it. I did it and would do it again.

I think we all need to realize one thing. We'd all do ANYTHING to get rid of our MS. This isn't just 'anything' like "hey I heard eating asphalt will help MS patients" since there are some obviously respected physicians talking about it. But it's all still conjecture, just like the autoimmune model, until someone can show a causal relationship between fixing it and measurable disease progression. I don't want to talk about lesions. I have very, very few yet I'm an EDSS 5. I know other people with literally hundreds who ae a 2 or less, it's progression that matters to the patient, not lesions.
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Postby Lyon » Sat Dec 11, 2010 10:21 am

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Postby bruce123 » Sat Dec 11, 2010 6:51 pm

Lyon wrote:[ Something is obviously different about the systems of people with MS. The first sign of something worthy of consideration MUST show a difference between the general population and people with MS and that has yet to be done.


Lyon, I agree with your post but I want to emphasize one point.

I work in the field of scientific research and I agree that research is critical to move forward. My problem is with the direction of the research.

What would happen if some doctor started to remove the fingernail of the baby finger on the left hand of MS patients and in a large number of these patients there were significant, life changing improvements in their condition. Would it make sense to study how the fingernails of MS patients are different or would it make more sense to assume that fingernails are just fingernails and study why it helps MS patients when we remove their fingernail.

It is a silly example I'll admit, but scientific research that is not asking the right question is a waste of time, and time is not our friend.

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Postby Cece » Sat Dec 11, 2010 7:22 pm

Lyon wrote:Were you also taking into consideration the numerous people we've heard from who haven't experienced benefit, or have even gotten worse, who remain convinced that "once more venoplasty" or a second opinion to "make sure nothing was missed the first time" or "give it a few more months"? At what point do they get placed in the "not positive" column?

Just my observations, Lyon!

I would think people who have improvements but lost them might be more likely to return to social networking as they make plans for a second treatment, that could be an additional consideration. But I didn't take any of it into consideration, you can't measure the unmeasureable, I was just saying my observations (perhaps imperfect) of what's reported here (also perhaps imperfect) was that the largest group is people with improvements who lost them; then people with improvements who kept them; then people with no improvements or continued progression.
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Postby Lyon » Sat Dec 11, 2010 9:16 pm

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Postby Cece » Sat Dec 11, 2010 11:37 pm

Lyon wrote:The vast majority of the time you are the enemy of these kind of "seems like" non-science responses and in fact most of the time you show to have the objective viewpoint you often speak of.

Lyon, that almost seems a compliment
Then again occasionally, like this time, you throw in a baseless, blatant advertisement for CCSVI which almost seems more of an infraction, coming from someone who is known to be sometimes objective.

alas, no one is perfect :wink:

although I do not like the characterization of my observations as being "baseless." My observations are based on no more -- and no less -- than what I have read here over the last many months.
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Postby Loobie » Sun Dec 12, 2010 6:41 am

The social network statement is SO spot on. I spend way more time over on Facebook than I do here as I communicate much more with folks who have already had the procedure done as that's the camp I fall into now.

There are lots and lots of folks on there who've been all over the world to get this done; I mean Egypt, Kuwait, Poland, Bulgaria, San Diego, lots of places. While there are still some great stories over there, there are lots of stories of people who have improved and then started seeing stuff again. It's just the nature of the beast as I alluded to before. We haven't found it all yet that is for sure. But improvements are improvements and there isn't one MS'r in the world who wouldn't take six months of relief if there was a chance.

It is obvious to me that messing with our CCSVI has an effect on MS; sometimes very profound as is the case in our old friend Mel who basically doesn't have MS anymore (at least in terms of outward expression of symptoms). But I was just watching a video this morning from a gal who had absolutely astounding results. She is having some issues again, but is also having issues in her veins as evidenced by thrombosis in her angio'd area.

So is that thrombosis blocking flow and making the MS poke it's head up again in her? I can't say for sure but it's awful hard to watch someone you've watched literally do EVERYTHING (bungee jump, skydive, etc) since her procedure when she used a chair transiently before and then start having MS issues but also thrombosis in the affected area. When I say hard, I mean hard not to make a connection with that and progression and MS problems. However, since there aren't published studies if falls into anecdotal. But it is very compelling to watch an anecdotal correlation like that and not buy into it. But we're too "broad" in our view yet. We are still at the point of 'bad or good' rather than pointing to mechanisms of action and the like. Joan, who does mountains of research can draw many more lines to studies and stuff than I can so I may be speaking somewhat ignorantly, but there we are.

I sure hope these first studies open the flood gates because this needs some serious study; it really does.
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Postby Lyon » Sun Dec 12, 2010 9:43 am

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Postby CCSVIhusband » Sun Dec 12, 2010 12:14 pm

don't let them drag you down into the mire Cece ... 50ish more days ...
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Postby jimmylegs » Sun Dec 12, 2010 2:27 pm

agreed. methinks this mire is waxing a shade hypocritical, although i have not done the power analysis on my data to say that with confidence ;)
i believe the original post relates to how new brunswick is choosing to spend half a million dollars of its health care budget.
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