Cerebrospinal Drainage Not Tied to Multiple Sclerosis

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

Postby EJC » Sat Feb 12, 2011 2:59 pm

I've been thinking about the posters on this forum who continue to trawl every possible piece of information to try and debunk the theory and progression of understanding of CCSVI.

It used to aggravate me to be honest, I really couldn't understand why they were here to start with....however I've suddenly realised that it actually doesn't matter.

With something as groundbreaking as this theory, there is no such thing as bad publicity, it's all good, it all makes people read the available information, talk to those that have had the procedure and leave them to draw their own conclusions.

What all these naysayers are actually doing is furthering the exposure of CCSVI and creating more pressure on the the powers that be to undertake the clinic trials everyone is after.

I'd be delighted to see this happen.

So crack on boys, you're unwittingly doing the very opposite of what you're trying to do.
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Postby Coolcatcarrie » Sat Feb 12, 2011 3:22 pm

I agree ejc and it used to wind me up too! But I don't give a monkeys what the naysayers say I believed in ccsvi from the beginning and now I have had my procedure I know I was right to! this is the answer! Why waste time arguing it might not be - it is!
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Checking in here

Postby Rose2 » Sat Feb 12, 2011 3:41 pm

I was liberated with 2 stents 1.5 (that is one and a half years ago) years ago.
I was 6.5 on EDSS Scale. Today I am 0.00 on EDSS Scale.
I have my life back.
I have no more pain.
I have no more fatigue.
The big knife in my back is GONE.
I take one baby aspirin per day. I have dropped the $3,000.00/month meds that I was taking.
I required 2-3 outpatient Solumedrol doses (treatments) per year for FLARES the last few years before Liberation.
I have required ZERO Solumedrol since Liberation and NO FLARES.
I searched out Liberation in hopes to stop my progression. I NEVER EXPECTED TO GET BETTER.
YEAH. I THINK I WILL STICK WITH BELIEVING IN CCSVI. ;)
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Also....

Postby Rose2 » Sat Feb 12, 2011 4:10 pm

Also...
I do not believe that anyone who has ever suffered any of the myriad of MS symptoms would or could argue against the possibility or hope that CCSVI (which is a real diagnosis) may help if treated in some part.
Therefore, I do not give these argumentative posts credibility.
I embrace everyone with true questions and doubt. That is healthy and smart.
Energy spent in such a hopeless, endless argument only shows me that they do not understand MS.
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Re: Checking in here

Postby CD » Sat Feb 12, 2011 4:15 pm

Rose2 wrote:I was liberated with 2 stents 1.5 (that is one and a half years ago) years ago.
I was 6.5 on EDSS Scale. Today I am 0.00 on EDSS Scale.
I have my life back.
I have no more pain.
I have no more fatigue.
The big knife in my back is GONE.
I take one baby aspirin per day. I have dropped the $3,000.00/month meds that I was taking.
I required 2-3 outpatient Solumedrol doses (treatments) per year for FLARES the last few years before Liberation.
I have required ZERO Solumedrol since Liberation and NO FLARES.
I searched out Liberation in hopes to stop my progression. I NEVER EXPECTED TO GET BETTER.
YEAH. I THINK I WILL STICK WITH BELIEVING IN CCSVI. ;)
Rose2


I agree with you Rose2. I am only two months out and I feel improvements everyday. Some you don't even think about, big improvements, and tiny ones too.

As long as they are positive improvements I consider myself a success. I went to open a door and it flew open, I had increased strength. Wow! I never even thought of it like that.

Energy, yes, but strength improvement is great. I can open my own jars, the plastic water bottles, my pills with the child-proof caps, etc. Like I said, tiny things you don't think about happen too.

I saved for over two years to get the CCSVI procedure and it was worth it. I have three stents and I am on Warfarin for now. I hope to get reduced to baby aspirin after my three month check up.
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Postby Lyon » Sat Feb 12, 2011 4:38 pm

EJC wrote:I've been thinking about the posters on this forum who continue to trawl every possible piece of information to try and debunk the theory and progression of understanding of CCSVI.
Coolcatcarrie wrote:But I don't give a monkeys what the naysayers say I believed in ccsvi from the beginning and now I have had my procedure I know I was right to! this is the answer! Why waste time arguing it might not be - it is!
Interesting outlooks!

Until now I would have thought that someone trying to "debunk" and "naysay" would have been working towards that end rather than just saying that it remains to be proven, as we do :roll:
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CD!

Postby Rose2 » Sat Feb 12, 2011 4:51 pm

CD!
So happy to hear of your good reports! Keep it up!
I always considered my MS as a 'look back' disease in that I could look back and see what I had lost in function, lifestyle, etc.
Now, I call my Liberation healing a look back issue also. The other day I was way under the desk plugging stuff into one of those long plug things (?) and then crawled out and stood up. THEN I was shocked. Didn't think twice about going under there to do it but was shocked once I was up on my feet with no help from others or chairs or benches or crawling a long distance to find a push up help. you know.
it took more than a year before I could go back to sitting at a desk chair all day. I was working on my laptop in my recliner now I am back at the desk knocking out work like no one's business. for 10 hours a day!
yep!
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Postby CaptBoo » Sat Feb 12, 2011 5:00 pm

Lyon, to the many of us that have had the procedure and have had improvements, there is nothing left to be proven.
<div>There be no dragons   ...Reese Palley</div>
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Proven!

Postby Rose2 » Sat Feb 12, 2011 5:01 pm

Hey Lyon!
Watch ME Roar!
PROVEN! at least for me. I won't speak for anyone else.
BUT, I WILL speak for myself. and it is Proven.
and don't call me a Placebo. or late for dinner!!
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Postby Lyon » Sat Feb 12, 2011 5:23 pm

CaptBoo wrote:Lyon, to the many of us that have had the procedure and have had improvements, there is nothing left to be proven.

Rose2 wrote:PROVEN! at least for me. I won't speak for anyone else.
BUT, I WILL speak for myself. and it is Proven.
and don't call me a Placebo. or late for dinner!!
As I've said so many times to so many people, I don't and never have had the slightest doubt that you're convinced.

On a different level, how much weight do you think that does or should hold in modern science?
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Back at ya

Postby Rose2 » Sat Feb 12, 2011 5:33 pm

Lyon:
How much do I think my Liberation results should be considered in medical science?
You are kidding, right?
100%.
Why would I not want my positive findings used 100%?
Did I misunderstand your question?
Do you have MS? Do you suffer pain, fatigue, etc, etc, etc. Have you been Scanned? Do you want to be scanned?
It does not hurt anything to at least get the information about your own body if you want it.
Probably just easier to sit there and spout. I understand.
Rose2 ;)
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OOOOH!!

Postby Rose2 » Sat Feb 12, 2011 5:41 pm

OH!
That MODERN Science.!
I get it now. That was the Trick word! Of course I never considered MODERN Science. Duh!
Dumb me. I was considering that old Un-Modern Science.
But what would that be since the Chinese have been practicing Medicine and Science for thousands of years and we keep building on it and using it. ??
Forgive me for being out of your loop if you have listed your MS diagnosis and history before. I am not 'up' on it and am guessing you are without symptoms at this time.
I am happy you are feeling well!
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Postby CaptBoo » Sat Feb 12, 2011 5:48 pm

Lyon, I would never assume that I hold any sway as to how much weight my world shares with your scientitific community. All I know is that today my dog and I climbed to the peak of Moon Mountain and then I cooked a pork tenderloin with mustard and vinagarrette glaze and shared a glass of Cabernet sauvignon with my wife, who I intend to make love with tonight. While you wait for scientific validation, I live.
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Postby JCB » Sat Feb 12, 2011 5:51 pm

Those of us that have been diagnosed and treated for CCSVI will not convince those that don't want to believe. To them we are weak minded people that don't realize that all the benefits we are seeing are in reality a placebo.

Why do they continue to post continuously here I don't know. You would think that they would post on the "skeptics" thread that was started just for them. That obviously wasn't enough fun for them so they poke fun at us weak minded individuals that are getting better. I took a break from TIMS for awhile, I see that they are still here. Same group saying the same things.

Don't get it.
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Postby dreddk » Sat Feb 12, 2011 6:48 pm

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?
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