Connecting the Dots Between Multiple Sclerosis and CCSVI

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

Postby North52 » Thu Oct 07, 2010 4:37 pm

Lyon wrote:North52,
As a skeptic I've gained a Dick Dastardly sort of reputation and I've come to hate asking questions because a lot of people are convinced that I live to prove the CCSVI theory wrong.

Still, I noticed that you mentioned having venous angioplasty 5 months ago and also wrote in this thread's first post
North52 wrote:Much of what I have written about was precipitated by the most severe exacerbation I had (and am still having) in my 10 years with MS.
and I'm just wondering if I'm not reading something correctly?


Lyon,

I am not sure what exactly you are questioning. Perhaps I should reword what I said. I was diagnosed with MS about 10 years ago. I had venous angioplasty in May of 2010. The worst exacerbation in my 10 years with ms started about 4 weeks ago. I have read many of your posts and I think we need more posts with your degree of skepticism.
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Postby Lyon » Thu Oct 07, 2010 5:05 pm

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Postby Cece » Thu Oct 07, 2010 5:34 pm

Dick Dastardly, you are right, it is important to remember that relapses are possible after the venoplasty.
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Postby Lyon » Thu Oct 07, 2010 5:42 pm

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Postby Cece » Thu Oct 07, 2010 5:47 pm

I am saying that relapses are possible even after successful venoplasty. POSSIBLE. It is not that big of a win, DD.... :)

It's why Zamboni recommends continuing to take immunomodulators. We just don't know. Even in CCSVI theory, it's possible that the immune system has been permanently altered as a result of overexposure to the brain; it's possible that iron remains in the brain from before the venoplasty that the immune system will clean out and cause an attack.
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Postby Lyon » Thu Oct 07, 2010 6:06 pm

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Postby North52 » Thu Oct 07, 2010 6:06 pm

Lyon wrote:
North52 wrote:I am not sure what exactly you are questioning. Perhaps I should reword what I said. I was diagnosed with MS about 10 years ago. I had venous angioplasty in May of 2010. The worst exacerbation in my 10 years with ms started about 4 weeks ago. I have read many of your posts and I think we need more posts with your degree of skepticism.
North
I appreciate your saying that and thank you for your openness.

I guess that could mean that you've restenosed or any number of things but I just wanted to make sure that I was putting 2 and 2 together correctly and that you were relapsing after venous angio.

Thanks again!


Lyon,

Yes, I did relapse after angioplasty but I do not think there was a restenosis. At angio, they found two lesions, an 50% stenosis of my azygous and a 100% stenosis of my left brachiocepahlic (aka innominate) vein. They ballooned the azygous but the IR did not want to attempt to balloon the brachiocephalic as this was all very new. I am booked Albany to attempt the ballooning of the brachiocephalic but the chances of success are not likely very good. FYI, I had definite improvement after ballooning the azygous alone. I think this relapse is just because I still have CCSVI. I am a firm believer.

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Postby Cece » Thu Oct 07, 2010 6:14 pm

Lyon wrote:We're a long way from knowing one way or the other but all the other bull about altered immune systems and iron aside, if people still have relapses after "successful" venoplasty, that would fall well within the needless risk, waste of time and money category.

Not if a very very few people have relapses post-venoplasty, far fewer than would be expected if no intervention had been done.

North52, do you know why the brachiocephalic ballooning would not have good chances? I am not even sure where the brachiocephalic is.

Lyon, it's ok to take the win, you know. You made a good point. Plus we both know this is overall not a game.
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Postby North52 » Thu Oct 07, 2010 6:26 pm

Cece wrote:
Lyon wrote:We're a long way from knowing one way or the other but all the other bull about altered immune systems and iron aside, if people still have relapses after "successful" venoplasty, that would fall well within the needless risk, waste of time and money category.

Not if a very very few people have relapses post-venoplasty, far fewer than would be expected if no intervention had been done.

North52, do you know why the brachiocephalic ballooning would not have good chances? I am not even sure where the brachiocephalic is.

Lyon, it's ok to take the win, you know. You made a good point. Plus we both know this is overall not a game.


Cece,

The left jugular and the left subclavian vein join to form the left brachiocephalic vein. The stenosis is probably due to scarring from the radiotherapy I had to my chest when I was 17 years old for a cancerous tumour there. The IR said that his experience with lesions of this type was that they were difficult to get through.
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Postby Cece » Thu Oct 07, 2010 6:32 pm

At least they will give it a try, maybe it will work. Hope so. So it's not that it's in the brachiocephalic that makes it hard, but the type of lesion.
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Postby MrSuccess » Thu Oct 07, 2010 6:33 pm

North52 - thanks for clarifying your CCSVI position . Long time TIMS readers know full well that there will be a mixed and -at times - frustrating Liberation result.

Long time TIMS readers also know that some very super smart medical practicioners are making inroads and gains - everyday - .

Each person that undergoes the Liberation procedure ADDS to the growing body of evidence ...... and takes part in helping develope the most effective method of CCSVI medical intervention .

Some say ...... Why is there so many methods of CCSVI treatment ?

The answer is ........ it is to everyones advantage that different methods and procedures be performed ...... and the results studied .




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Postby Lyon » Thu Oct 07, 2010 6:44 pm

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restenosis, clots, etc.

Postby 1eye » Thu Oct 07, 2010 6:50 pm

One thing that IS happening, is people (like me) with progressive disease who have not had a remission for 10 years or so, are having improvements. Another thing that IS happening is that people with primary progressive disease (I know one of them, at least) who have *never* had a remission. are having improvements. *Some* of these people are having restenosis, and clots.

Some of those people are having such an obvious reinstatement of their symptoms, they trace the 'relapse' to the appearance of the clot or restenosis.

Once the 'remission' has been experienced, it is obvious to patients and doctors alike that what can be done once can be re-done, and of course it remains worth the big bucks to get more blood Liberation.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Thu Oct 07, 2010 6:55 pm

I could be happy with that sort of success, Lyon.

North, I'd be discussing your original points, but they are a bit beyond me. From what I could tell, it was a thorough analysis!

1eye, it's true, I think something remarkable is happening, that has not happened before in the history of this disease. An absolute breakthrough. Can't wait to see what will be proven in the year ahead.
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Postby Lyon » Thu Oct 07, 2010 6:59 pm

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