'the wave of complications breaks'

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

'the wave of complications breaks'

Postby Cece » Thu Aug 25, 2011 12:37 pm

http://www2.macleans.ca/2011/08/25/libe ... ns-breaks/
edited out: quote from the opening of the article with insensitive phrasing
It is almost as if they had not heeded the repeated reassurances of journalists and “liberation” enthusiasts that venous angioplasty and stent installation in major neck veins are routine procedures, of about as much clinical concern as having one’s shoe size measured.

If my husband were going in for a surgical procedure, such as angioplasty of the arteries, I'd be a lot more concerned than if he was off shopping at Payless. Please. It is a routine outpatient surgical procedure, not requiring hospitalization, but it carries the same risks as far as we know of any such surgical procedure. If anyone here is not aware of it, I would be surprised, as we have people posting who have experienced those risks.
(See, for example, this note from neurologists in Erlangen: “…it certainly seems awkward to think of the complex disease MS solely as result of a simple venous outflow obstruction. Yet, the investigation of new vascular concepts as one variable in the pathophysiology of the autoimmune attack seems very worthwhile…”.)

First, the effects of CCSVI are not as simple as this makes it sound, since it has required a physicist's model to demonstrate the focal points of hypertension as two waves combine. But, yes, it is very worthwhile to investigate CCSVI to determine just what role it has in this multifactorial disease. I am convinced from my own experience that it is significant in mine.
Either way, unfortunately, the premature enthusiasm for “liberation therapy” is cold inescapable fact.

I have a not-numb arm, a not cog-fogged brain (after procedure #2), a not dying-of-fatigue body, and a not foot-dropped foot that argue otherwise. If anything, my enthusiasm was not great enough, at least in comparison to the results I've gotten. It is different for everyone, but that is how it's been for me.
Last edited by Cece on Fri Aug 26, 2011 10:31 am, edited 1 time in total.
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Postby sou » Fri Aug 26, 2011 2:17 am

Why does a neurologist mess with conditions outside his field?

I also think we have had enough of that immune b.sh.t. It reminds me of a joke about a woman buying a state-of-the-art washing machine in order to place the wash basin on top of it!

No, no, no, let us not start a flame discussion. I want to beg everybody involved in publishing such articles to have the brain/hands communication thoroughly checked before starting to write.
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Postby jimmylegs » Fri Aug 26, 2011 6:39 am

that sentence made me feel sick and i think that out of respect we should not repeat certain things here.
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Postby 1eye » Fri Aug 26, 2011 4:15 pm

This is disgusting FUD journalism. The comment about "from the world" sounds like something Freedman would say. In fact the article sounds like he had a lot of input. I guess MacLeans might have changed their tune. Too bad; I thought they had one good reporter. Oh well. That's what happens when you only make one phone-call before deadline looms. I have heard there are actually neurologists who don't give you his party lines, or tell you all those lies. You won't see them in the newspapers, though. Science by propaganda, sounds very modern.
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Postby jimmylegs » Fri Aug 26, 2011 4:22 pm

cece? are we going to be keeping this alive?
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Postby Cece » Fri Aug 26, 2011 6:08 pm

Do you want me to edit out the post? Or just lock it off to comments?
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Postby jimmylegs » Fri Aug 26, 2011 7:08 pm

maybe a judicious edit for now?

really, i don't think we should even dignify this source with a response of any kind.

'ware the energy vampire.
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Postby fee001 » Fri Aug 26, 2011 8:47 pm

Hi!

I find your incessant postings on anything and everything regarding ccsvi a little obsessive.

There is good relevant info, and then there is uneccessary info you cant cover the whole worlds info and opinions it is just not possible.

If my son or daughter were diagnosed with ms and came to this section I would be deeply concerned.

Too much info on one subject and the continuous multiple daily postings, would be unhealthy for them.

Relevant well balanced info on pros and cons is good, but a bombardment to the degree that you create is not.

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Postby MrSuccess » Fri Aug 26, 2011 10:43 pm

you really shouldn't get your medical information from a magazine or

a newspaper . or a tv show , for that matter.

All three of these depend on advertisement dollars to earn a profit.

All three need sensational or contentious story's to sell their wares.

Read them ? Sure. Why not?

More often than not ..... their FACTS are so out in left field ...... it is comedic.

Read respected Journals penned by respected professionals ..........

And laugh off the other stuff.........


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Re: 'the wave of coplications breaks'

Postby NHE » Fri Aug 26, 2011 10:59 pm

Fiona,
If you have no interest in reading about CCSVI, then don't. That's ok. If other members wish to discuss the research or other relevant topics surrounding CCSVI, that's ok too. Criticizing people for discussing research and articles that are of interest to them is not ok however.


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Postby fee001 » Fri Aug 26, 2011 11:49 pm

Hi!

Thats not the point, I am seeing it from a new young impressionable visitor.

Somebody who may have been diagnosed within say 24 hrs.

We've all been there, they are going to want to clue up on a few things, already dazed and probably in shock is it fair for them then to find themself in an area so vast as this has become. to cause them added confusion. I have choice, and experience others less savvy havent and I do object a little to being told how to conduct myself I am 47 I dont need telling what to do.

I do NOT object to others discussing or debating a subject that they are interested in that is NOT my point.

I have made posts on the general board only for that to then become a vehicle to mention ccsvi yet again in a reply, usualy by the same person.

So we are then given no choice is that again fair. I know it is an incredibly tricky area.

Perhaps new visitors should be advised not to take so much on board at once, as doing that is not possible and will cause them added stress.

I do not know what the answers are I just know if I was in a newly diagnosed person shoes, this would cause me a problem.

There is a bigger picture here and it does cause concern



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Postby 1eye » Sat Aug 27, 2011 3:54 am

If someone is recently diagnosed, I would advise them to stay away from the magazine stands, but unfortunately MacLean 's is a staple in both doctors' offices and hospitals, where a lot of us get our medical information. I don't mean from the magazines. I would bet it is a very rare medical waiting room in Canada that has less than one copy of this one. They probably get a discount. Perhaps it is there that the censorship should start, as many of the recently diagnosed have probably read this article: the ones with 'MS', with some interest.

Certainly it was long before the article, but a question in my mind is whether 'Liberated-Man' started calling death a side-effect, before or after a certain disagreement between 'autoimmunity' and chemotherapy? I know several of our collateral Tysabri damage reports have been connected with something similar, as has the delayed heart attack I had, while a registrant at a noted 'MS' clinic.

On the lighter side, prostate cancer has been in the news lately. I saw some of its sufferers on TV last night speaking about thermostatic difficulties, perhaps brought on by the female hormones they had to take. I wondered whether any marital benefits were to be found loitering in the area between a cool hand and a hot flash? Being 57 years young has me considering these matters :)
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Postby sou » Sat Aug 27, 2011 3:57 am

What should be done? Self-censorship so that newcomers are not afraid of MS? Wouldn't that be unfair for the non-newcomers? This has already happened in other forums and, believe me, it was pretty bad.

Or pretend that CCSVI does not exist and go back to the 2000s era? Why is mentioning a condition that explains some pieces of the MS puzzle bad?

This is a fantastic forum where all opinions are welcome. Everybody is a responsible person and mature enough to understand what he/she reads and free to like or dislike any post. We don't need any more restriction than the very obvious that the moderators apply, IMHO.
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Postby 1eye » Sat Aug 27, 2011 4:12 am

sou wrote:Everybody is a responsible person and mature enough to understand what he/she reads and free to like or dislike any post.


Or, in the case of the face-illiterate, to click on "ambivalent". :wink:
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Postby Lyon » Sat Aug 27, 2011 6:56 am

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Last edited by Lyon on Sun Nov 20, 2011 3:47 pm, edited 2 times in total.
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