Latest Wheelchair Kamikaze Post on CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Lyon
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Re: Correlation does not imply causality

Post by Lyon »

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Last edited by Lyon on Thu Jun 23, 2011 5:42 pm, edited 1 time in total.
dunkempt
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Post by dunkempt »

This isn't even Canada, which (sorry Canadians) is something of a third world when it comes to CCSVI.
Not as sorry as we are.

-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
Cece
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Re: Correlation does not imply causality

Post by Cece »

Lyon wrote:I was writing and hadn't noticed your post........I hear tar and feathers is THE costume of choice this year!
Would a tarred-and-feathered lyon be a griffin?
Last edited by Cece on Sat Oct 30, 2010 1:35 pm, edited 1 time in total.
Lyon
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Post by Lyon »

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Last edited by Lyon on Thu Jun 23, 2011 5:43 pm, edited 1 time in total.
Lyon
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Re: Correlation does not imply causality

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Last edited by Lyon on Thu Jun 23, 2011 5:44 pm, edited 1 time in total.
Cece
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Re: Correlation does not imply causality

Post by Cece »

Lyon wrote: An emphatic YES!
:D glad you liked it
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NZer1
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Post by NZer1 »

fogdweller wrote
[In my case, no harm done, but I suspect I have restenosis and am havinging trouble getting follow-up. The interventionalists at Pacific Interventionalists do not think that restenosis is something they are likely to see, and others don't want to see me for follow up since I have already been treated by someone else.]
This is a big concern internationally, and is becoming an issue. Be ware who is performing for you and that follow up and multiple treatment is available.
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1eye
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Post by 1eye »

Sorry, Marc, for getting all huffy and attracting the wrong sorts of people to your thread...

I am getting kind of tired of this stuff, so I'm taking a leave from the flammability and spurious insults. I never did feel too comfortable trying to answer in kind. It's a bit demeaning. I don't think I need it right now. I have enough problems without lowering myself to writing things like: 'I guess denying things makes them not so.' Gods of science forbid.

I am sorry for the 'half a brain' comment. I just get impatient with people who have more marbles than me and choose to play tiddly-winks. But it's their own choice after all. Notice I said nothing about those with fewer... I'm always up for a game with them.

How am I doing Cece? Not very well, I guess :cry: Let me know if there's any good satire appears, will you?

Anyway much of this fooforah by local pundits will likely have blown over by the time I poke my head in around here again, though I will probably watch your blog, Kamikaze.

Number one reason people who have been Liberated disappear from the Internet: suddenly they have a life. All the world's a stage, and I'm leaving on the next one. I won't go away mad, really I won't. Or sad. Thanks for the fish. :D
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"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
Lyon
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Post by Lyon »

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Last edited by Lyon on Thu Jun 23, 2011 5:44 pm, edited 1 time in total.
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fogdweller
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Post by fogdweller »

Cece wrote:
fogdweller wrote:The interventionalists at Pacific Interventionalists do not think that restenosis is something they are likely to see
If Zamboni had 50% restenosis, how could it not be likely? Also with the newer more aggressive methods that what Zamboni used and the deviance from the suggested anticoagulants by Zamboni (not antiplatelet like Plavix), I believe it raises the risk of clotting.

To me this is a red flag against Pacific Interventionalists.

Fogdweller, are they willing to see you, they just don't think it's likely to be restenosis? Or are they not willing to see you?

This isn't even Canada, which (sorry Canadians) is something of a third world when it comes to CCSVI. This is the US and people are still falling through the cracks?
It was hard not to be a smart alek when they said they didn't expect it so they weren't lookiong and didn't see any. How can you see any if you don't look? I had sore jugulars for three weeks; some immediate results faded in about three days, and my calf muscels are a little worse than they were before, but otherwise back to about where I was. Dr. Sclafani was concerned and pm'ed me. I won't say more because it was a pm and if he wanted it out there he would have put it on his site, he is incredibly generous about what he is willing to say on a public forum.

As far as my situation, who knows about where I really am, but no luck geting any follow-up so far.

I am not sure why I got the dilsmissive the attitude I got.. Dr. Harris was very proud of the fact that they had trained up under Dr. Haake, and did all this pursuant to Haake procedure, and worked closely with Dr. Haake. From what I can tell Dr. Haake is a PhD expert in MRI with an interest in CCSVI but not the vascular expert that some of our other friends on this site are (imho, Cece, that includes you about a lot of things.) They may be a mill making money off a relatively simple procedure in very high demand. Who knows. I certainly have heard good things about Dr. Arata.
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Post by Cece »

1eye, maybe you are the Scarecrow, he had his brains all along.

fogdweller, I changed what I wrote here into a pm
Last edited by Cece on Sun Oct 31, 2010 7:55 pm, edited 2 times in total.
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MegansMom
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Re: Correlation does not imply causality

Post by MegansMom »

1eye wrote: and the risks are well-known to be minimal and manageable.
If only saying it made it true, that would be wonderful, eh 1eye?

Risks of arterial angioplasty are well known and minimal. For all the reasons stated previously and you continue to ignore, venous angioplasty is an entirely different matter and the safety profile remains unknown.

Sorry Lyon,

VENOUS ANGIOPLASTY has been done safely for many many years.....over 20 years although I cannot be exact. But I have been a nurse 38+ years and its been around most of them.

Originally done for venous stenoses and strictures seen in renal dialysis patients, this is NOT a new procedure or new tools , just a new application. It is considered a safe minimally invasive procedure.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
Lyon
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Re: Correlation does not imply causality

Post by Lyon »

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Last edited by Lyon on Thu Jun 23, 2011 5:45 pm, edited 1 time in total.
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MegansMom
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Post by MegansMom »

Lyon wrote:
MegansMom wrote: VENOUS ANGIOPLASTY has been done safely for many many years.....over 20 years although I cannot be exact. But I have been a nurse 38+ years and its been around most of them.

Originally done for venous stenoses and strictures seen in renal dialysis patients, this is NOT a new procedure or new tools , just a new application. It is considered a safe minimally invasive procedure.
Sorry MegansMom, I didn't say venous angioplasty hasn't been around long, it hasn't been done commonly and when it's been done in the past it's been on patients with no other option.....or are you not hinting that the patients have gone on to live a long life afterwards?
No, this is incorrect. Call a health insurance company if you doubt me. Its considered a very safe procedure. And your implication that it is not does not make it less safe.

Renal dialysis patients who have had venous angioplasty have gone on and lived long lives. Some stay on long time dialysis and some............thousands get renal (kidney) transplants and live long "normal" lives. The angiolasty is merely a small speed bump. My nephew is one. He needed angioplasty during year 1 of his renal dialysis and went on to receive the transplant of his Dad's kidney. They both are doing well by the way and his life expectancy is not influenced by the angioplasty but the Immune suppressive drugs he must be on for the rest of his life.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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whyRwehere
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Post by whyRwehere »

Well, I listened to the morning edition on WBUR and heard nothing, but a lot of boring political talk....
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