Cerebrospinal Drainage Not Tied to Multiple Sclerosis

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

Postby CaptBoo » Sat Feb 12, 2011 7:55 pm

Deleted, good night.
Last edited by CaptBoo on Sat Feb 12, 2011 8:21 pm, edited 1 time in total.
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Postby CCSVIhusband » Sat Feb 12, 2011 8:08 pm

dreddk wrote:Perhaps the logical explanation is, as the study and other summise, ccsvi does not cause ms. However, this does not mean it does not exist in those with long term ms ie ccsvi is a symptom of ms. This would explain the fatigue relief etc felt by those who have the liberation treatment.

The issue then would be- do the the benefits of treating a subset of ms symptoms outweigh the risks?


Going from a 6.5 to a 0.0 on the EDSS is just a relief in fatigue? or some other "subset of symptoms".

Huh ...
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Postby CD » Sat Feb 12, 2011 11:50 pm

My thoughts on this thread fwiw:
Do we really care what other people have to say about what we say or do? No we don't, and we shouldn't even let it bother us in any way. Let it go. We are free to do what we want.

We can have the CCSVI procedure whether we have MS or not. It is for clearing out the problems in our veins. If we had a blockage in our leg, a vascular surgeon would jump on it asap. It is unhealthy to have blockages anywhere in the body.

So forget the MS for now, we have venous problems, either born with them or acquired. They worsen over time in some people. Some people have no symptoms until autopsy, just like MS, but we are calling it vein problems in the jugulars and Azygos because that is exactly what it is all about.

Even children have pediatric MS, perhaps they don't have to suffer like we did. One day they will probably treat young children or at least test them. We know we are pioneers. Someone has to try this besides mice, or red Chinese hamsters. One day the world may be free of MS because we had free will and tried a procedure we believed in.

People go into drug trials and have bad results. Then they tweak this or that and it gets fast tracked. These people volunteer to be pioneers too. They don't even know the side effect, we do with CCSVI. We read and educate ourselves, we take our time, and we make a choice to go for it. That is our right. It is not fair to argue over our decision. You make your own decision, and you live with it.

Bad veins must be cleaned out and fixed or we will be worse off, like with a leg blockage. We need help, and some great IR's MD's are helping us fix our bodies.

If some people don't believe, who cares? If some don't want to be fixed, who cares, If some people are too young or too old and will wait, or not have it done, who cares. It is their choice to pick whatever drug, treatment, or no treatment at all. This is our treatment.

Those that don't believe or want to argue, what for? We don't need your approval. We are getting the procedure preformed by some great doctors. You don't have to get it. We want it though.

Maybe you can't afford it or have no ins, or just want to keep with the medication you take now, that is your choice. This is not a tug-a-war to see who wins. This is real, for us who believe in CCSVI.

We don't need to be validated by anyone. Especially by those that wish to disprove every person who has the procedure is wrong. We don't think you are wrong about what or if you smoke, drink, take DMD's or other drugs, eat read meat all day long, etc. That is your choice. Let us have our choice. Let us be.

I realize that many of you are very scientific, or only believe in statistics or clinical trials. Personally I think it is awful to do a sham procedure by picking that person's name out of a hat on the O.R. table.

"Physician do no harm." Yet that is what the NMSS, big Pharma and the Neuro's would like us to do, and pay for it too. I don't think the first heart and liver transplant patients had sham procedures. JMO

This trials are all to please some countries and some PhD's that this procedure CCSVI, which has been pushed around for over 100 years - out of the picture of helping people.

Just treat them with drugs and they will be quiet. WRONG! This will not be going away any time soon. So either get on the same page, or put down the book, because those of us that believe in this procedure don't need your approval, just like your treatment does not need our approval.
Stepping down now off my soap box.
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Re: Cerebrospinal Drainage Not Tied to Multiple Sclerosis

Postby Leonard » Sun Feb 13, 2011 12:28 am

scorpion wrote:This seems pretty decisive.

http://www.doctorslounge.com/index.php/news/pb/17787


Strictly speaking, the article is probably not wrong. But at the same time it is not the full truth either. And therefore not completely honest with us, at the least not if we read it in our particular context. Perhaps it is not very honest either with the normal audience for these papers ...

I am a big believer in ccsvi and in the liberation treatment, and in fact have been liberated 3 times. And I also believe that there is a high correlation between narrowing in the draining veins and the occurance of MS. There, the article is wrong. There is ample evidence of this, the world round.

But I do believe that MS itself is not caused by the venous abnormalities as such. But that it is caused by an insufficient feeding of the brain cells with glucose. ccsvi may indirectly contribute to create a low glucose condition but for example the hardening of the veins at mid age may also become very important for the onset of MS.

I invite all of you to have a look at this thread http://www.thisisms.com/ftopict-15188.html
I know, the title may sound a bit arrogant, I was in a state of euforia when I found it, but I am convinced that here lies the very crux of what is MS.
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Postby scorpion » Sun Feb 13, 2011 9:19 am

I can not help but wonder if this type of "internet science" is the wave of the future. As the internet reaches more people and increases the power over the way it makes people think and act, will science be replaced with internet bloggers who have it "all figured out"?
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Postby CaptBoo » Sun Feb 13, 2011 9:31 am

So the circle is unbroken. That is fine way to end your thread. The one you started by sharing an Internet blog.
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Postby Lyon » Sun Feb 13, 2011 9:35 am

CaptBoo wrote:So the circle is unbroken. That is fine way to end your thread. The one you started by sharing an Internet blog.
Blog? You might want to look again http://www.doctorslounge.com/index.php/news/pb/17787
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Postby Coolcatcarrie » Sun Feb 13, 2011 9:41 am

Scorpion - why are you so bothered about trying to prove us positive pro-active go-getters wrong??? I don't understand you at all? Because we have tried ccsvi - we already know we're right!! Haha - what a sausage! Just go dig yourself a hole if that's your attitude? X
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Postby Lyon » Sun Feb 13, 2011 9:47 am

Coolcatcarrie wrote:Scorpion - why are you so bothered about trying to prove us positive pro-active go-getters wrong??? I don't understand you at all? Because we have tried ccsvi - we already know we're right!! Haha - what a sausage! Just go dig yourself a hole if that's your attitude? X
.
Wow, that's pretty adult!

coolcatcarrie wrote:Scorpion - why are you so bothered about trying to prove us positive pro-active go-getters wrong???
Is there a right and wrong and has scorpion tried to point that out....REALLY? Trying to point out that CCSVI remains an unproven theory is a far cry from saying that someone/something is wrong.
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Postby CCSVIhusband » Sun Feb 13, 2011 9:59 am

Lyon wrote:
Coolcatcarrie wrote:Scorpion - why are you so bothered about trying to prove us positive pro-active go-getters wrong??? I don't understand you at all? Because we have tried ccsvi - we already know we're right!! Haha - what a sausage! Just go dig yourself a hole if that's your attitude? X
.
Wow, that's pretty adult!

coolcatcarrie wrote:Scorpion - why are you so bothered about trying to prove us positive pro-active go-getters wrong???
Is there a right and wrong and has scorpion tried to point that out....REALLY? Trying to point out that CCSVI remains an unproven theory is a far cry from saying that someone/something is wrong.


I think part of the problem for you, Lyon and scorpion, is the perception that you continue to respond to these type of posts. But you don't respond to posts that ask legitimate questions ... that probes at the real issues.
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Postby Coolcatcarrie » Sun Feb 13, 2011 10:00 am

What i'm trying to say is - that's fine, I don't know your situation but if you guys don't want to try ccsvi then don't - that's absolutely fine with everyone who has believed in it, tried it, and it has worked for - not bothered at all if you don't want to try it - but when we know it works - I fail to see what you are achieving by trying to tell us that it's not real???
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Postby Jugular » Sun Feb 13, 2011 10:22 am

scorpion wrote:I can not help but wonder if this type of "internet science" is the wave of the future. As the internet reaches more people and increases the power over the way it makes people think and act, will science be replaced with internet bloggers who have it "all figured out"?
I highly doubt it but the Internet can accelerate science by allowing for the mass sharing of ideas. Gone are the days where a study like this might generate a few letters to the editor months after publication. Now the feedback is near instantaneous and massive by comparison. Those involved with this sort of research now not only have easy access to these studies, they can also comb through the responses from us bloggers for the odd insight that might improve the methodology for future studies.

More importantly, on both sides of the debate, it's much more difficult these days to get away with poor methodology and over-reaching conclusions. Poor science does not fair well under such scrutiny. Nor does propaganda masquerading as science.
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Postby Lyon » Sun Feb 13, 2011 10:38 am

Coolcatcarrie wrote: - I fail to see what you are achieving by trying to tell us that it's not real???
I give up, you're right, just link where scorpion or I told someone that it isn't real to refresh my memory.......with it in mind that saying it isn't proven isn't saying that it isn't real.
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Postby Coolcatcarrie » Sun Feb 13, 2011 10:56 am

Proof is in the results people are seeing, anyway I'll go away my proof and you keep looking for yours.
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Postby scorpion » Sun Feb 13, 2011 11:19 am

Coolcatcarrie wrote:Scorpion - why are you so bothered about trying to prove us positive pro-active go-getters wrong??? I don't understand you at all? Because we have tried ccsvi - we already know we're right!! Haha - what a sausage! Just go dig yourself a hole if that's your attitude? X
.


What bothers me is seeing people encouraged to get angioplasty 3-4 times and spend $20,000- $30,000 until they see SOME kind of MS symptom improvement. When new people come to this site you want them to believe angioplasty beyond a reasonable doubt improves symptoms of MS however I am sorry but until someone shows me proof that is the case my doubts will continue. Proof, for me, comes from studies showing that CCSVI is more prevalent in MS than in the normal population. Another way to prove that addressing CCSVI is beneficial to MS patients is through long term followup of people who claim they had improvements after angioplasty and sorry this restenosis explanation is not going to cut it. By the way everyone keeps discussing "the proof"people are seeing. How anyone can anyone can make sense out of the countless stories people have posted after their procedure baffles the mind. To say there is some pattern emerging is not true. Some people rise from wheelchairs and run marathons while others notice small improvements in their walking ability after the procedure. Some people do not see results to later. Some people see results than they go away. Some people don't have improvements, than have improvements, than do not again. Some people need three angioplasty procedure to see any improvements. Some people NEVER see improvements. Some people claim to get worse. So what proof and which results?????? :?
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