New Wheelchair Kamikaze Post on the Current State of CCSVI

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

crushed velvet dwarfism

Postby 1eye » Wed Jun 16, 2010 7:10 pm

The humble plumber... I think I've heard of him... Isn't his name Joe? I waited a long time (this is a long, thought-provoking thread). I thought I would see it. Somebody picking up on the Kitchen Counter-Analogy. It is the ideal Antidote to the Kitchen Analogy, only with a brand-new marble Counter-Analogy. My brain is like a Kitchen... If you can't stand the heat stay out of my head. I've been out of it for years. But as Geoge Leroy Tirebiter once said "it hasn't affected my appetite." I don't think he won the election either. Not humble enough. Waited for the electrician but he never showed up... All Hail Julius and John.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby babiezuique » Thu Jun 17, 2010 7:25 am

Thank you Fernando for this very acurate epistemology link! I studied philosophy here in canada, and i did a special seminar were we studied Khun and popper... This, morning i will go to buy these books and read them while i'm in Katowice! Leaving next saterday... I'm going to meet the new gereration;)

Now, my brain does not allow me to be able to compete intellectually with you.... but i hope i'll get better and fight with the ones who should shut up ( instead of dying...because you know it will take time...before somes do...)

Thank you again Fernando;)
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Postby 1eye » Thu Jun 17, 2010 9:39 am

>So why is buffalo's control goup for ccsvi 25%. Hmm well 5% could be these >benign msers, family members push it up, but like a lot of their numbers >dunno.

I think it's possible to hit a cluster of CCSVI, just as it is possible to find whole countries and small islands with MS prevalence different from neigboring what-have-you. Robert Zivadinov's test must be gone into in much more detail than has been seen in press releases, for anyone to make claims about its numbers. The claims simply cannot be supported.

It is possible to attempt to do science and politics that way and I think attempts have been made to try to limit any real decision-making to that trial, I think because of xenophobia or Not Invented Here or some cultural difficulty like language, though for someone who speaks so much Latin, a doctor should be very Italian-friendly. I have certainly only heard the scare story about lost travellers from one source.

CCSVI is probably accompanied by other venous abnormalities, and in my opinion many systems besides the CNS can be affected by it, although in that case it is not likely cerebro-spinal. My father had type 2 diabetes, with strokes and congestive heart failure thrown in. Oh, and along the way he also had 'diabetic' neuropathy. I think there were probably some vein issues in my grandmother on his side, who had strokes too. My mother's side contributed to the heart disease, which she and both her parents died of, all of them in the 60 range.

But she was also on dialysis for kidneys that were lost to vasculitis. My siblings are even better. One lupus, one MS :-), one rheumatoid arthritis, one vitaligo, and for good measure a case of CLL. Not exactly originators for this species. And of course being good catholics, only one of us don't have kids.

Maybe it's just that, but he didn't seem to have any problems until lately. There goes late-onset again. I say it again, once we pass on our funky genes, we can have not much effect on species survival, so individual survival becomes a good trick.

But I am really being facetious when I mention childlessness. Of course there's more. He was born with hydrocephalus, which is an over-production of spinal/brain fluid. He was one of the first recipients of surgery for it that worked, 45 years ago, and he had it not much after he was born. It was a plastic (I think) tube that drained a brain ventricle either to his body cavity or to his spine, inside his right jugular vein, I always thought it was to his heart, but lately there has been discussion about it among my siblings, and now I'm very unsure.

The last time they looked, he didn't need it anymore. But just lately he's been having sudden unexplained seizures. If I was an insurance adjuster and I saw any of us coming, I'd run the other way.

I think there is going to be a lot of family CCSVI, and of course it multiplies the prevalence of CCSVI among 'normal' people by the population increase, at least in our family, if we all have it.

But most of us live in Canada, where you are not even allowed to be tested.

This may turn into a good thing, for the wrong reasons of course. Doctors sometimes don't even bother to carefully read all of the available literature. Yet I have heard it said that all three diagnostic techniques need to be used to get the full thoracic picture (DU, MRV-3d, and the old gold standard, inky fluoroscopy). Yet there are some patients who have only had the last.

There other tools, like the DU catheter, the cutting balloon, probably many more. Stents are a small maneageable part. But like all good medicine, it is not a trivial thing to understand, even with a *very* open mind. I might wish that people with closed minds wouldn't try. But they may occasionally be redeemable. I do wish skepticism wasn't so often combined with the closed or defensive mind. A really closed mind cannot even be skeptical, because I think skepticism implies willingness to change your opinion, not blind faith in it.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
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Posts: 2852
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

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