What happened to this forum???

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

Postby concerned » Fri Aug 06, 2010 10:23 am

Certainly pro-CCSVI studies and news items are posted over and over again. Is that ruining discussion here? Is repeating mantras about 'stopping progression' clearing up muddy waters for you and helping you get to the truth?

So it's settled, say something once, why say it again? (to paraphrase David Byrne)
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Postby LivabirdsHubbie » Fri Aug 06, 2010 10:34 am

concerned,
that is very true... so it would be good if the skeptics stop going on about the 1 death, which they say was due to liberation where in fact the family has already said it was the blood thinner not the procedure.
But they keep on and on about this 1 case, even grows over time to 2 cases as published by the Swedish study...

I do agree that both positive, negative and indifferent results should be posted
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Postby concerned » Fri Aug 06, 2010 10:38 am

So they would have been on blood thinners and that would have killed them without the procedure then? Or is it best to do the procedure without blood thinners?
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Postby MrSuccess » Fri Aug 06, 2010 10:41 am

px - remember that PM you sent me ? :wink: Class Act that I am ..... I won't forward it to - you know who -

You guy's have made my day :o



Another person I wouldn't want in a foxhole with me . :twisted:



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Postby LivabirdsHubbie » Fri Aug 06, 2010 10:51 am

concerned wrote:So they would have been on blood thinners and that would have killed them without the procedure then? Or is it best to do the procedure without blood thinners?


It was an existing condition according to the family, the blood thinner sparked it off, yes of course the liberation procedure at this time was why they were on blood thinners, but the same thing would have happened if they were to have a stroke or whatever reason they would be put on the blood thinners
The family if you have read it, has come out and said as much

With your logic, you can blame everything on being born, because without that this would not have happened
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Postby Cece » Fri Aug 06, 2010 10:57 am

concerned wrote:So they would have been on blood thinners and that would have killed them without the procedure then? Or is it best to do the procedure without blood thinners?

What 'them'? You are talking in the plural, but there was one death. The coroner stated the death was not a result of the procedure. According her boyfriend jerkbutt's post here at thisisms, she was on two blood thinners. I think people who are scared about the death should know that doctors do not normally prescribe more than one blood thinner in conjunction with the procedure.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby malden » Fri Aug 06, 2010 1:31 pm

Cece wrote:...I think people who are scared about the death should know that doctors do not normally prescribe more than one blood thinner in conjunction with the procedure.


Yes they do... for example aspirin with warfarin (Coumadin) or Plavix. Its more then one blood thinner in the same time.
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Postby Cece » Fri Aug 06, 2010 2:35 pm

Malden wrote:
Cece wrote:...I think people who are scared about the death should know that doctors do not normally prescribe more than one blood thinner in conjunction with the procedure.


Yes they do... for example aspirin with warfarin (Coumadin) or Plavix. Its more then one blood thinner in the same time.

I'll look into this then, thanks. My impression from what jb posted was that it was that the doctor hadn't know about one of the blood thinners (he offered the advice to make sure your doc knows what you're taking)...but I am not sure about that.

Back to the topic at hand...let's run those folks who derail threads right out of town...but not me, please. :lol: 8O :wink:
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Rose2 » Fri Aug 06, 2010 3:52 pm

Plavix is not a blood thinner. A blood thinner affects the fibrin clot ability. Plavix works on the red cell to make it 'slick' like a teflon coating so that it will slip past obstructions, small areas, etc.
Coumadin and aspirin both work on the clotting factors.
I have taken both at the same time. Actually I have taken all 3 at the same time.
MDs seem to be across the board on what they are prescribing post treatment. Every patient and need is different.
Especially with blood factors.
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Postby concerned » Fri Aug 06, 2010 4:02 pm

Cece wrote:
concerned wrote:So they would have been on blood thinners and that would have killed them without the procedure then? Or is it best to do the procedure without blood thinners?

What 'them'? You are talking in the plural, but there was one death. The coroner stated the death was not a result of the procedure. According her boyfriend jerkbutt's post here at thisisms, she was on two blood thinners. I think people who are scared about the death should know that doctors do not normally prescribe more than one blood thinner in conjunction with the procedure.


I was using 'them' and 'they" as gender neutral terms because, well, it's 2010. Didn't mean to imply that more people died from liberation-related blood thinner use.

Dictionary.com
Long before the use of generic he was condemned as sexist, the pronouns they, their, and them were used in educated speech and in all but the most formal writing to refer to indefinite pronouns and to singular nouns of general personal reference, probably because such nouns are often not felt to be exclusively singular: If anyone calls, tell them I'll be back at six. Everyone began looking for their books at once. Such use is not a recent development, nor is it a mark of ignorance. Shakespeare, Swift, Shelley, Scott, and Dickens, as well as many other English and American writers, have used they and its forms to refer to singular antecedents. Already widespread in the language (though still rejected as ungrammatical by some), this use of they, their, and them is increasing in all but the most conservatively edited American English. This increased use is at least partly impelled by the desire to avoid the sexist implications of he as a pronoun of general reference. See also he1 .
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Postby Cece » Fri Aug 06, 2010 5:02 pm

concerned wrote:I was using 'them' and 'they" as gender neutral terms because, well, it's 2010. Didn't mean to imply that more people died from liberation-related blood thinner use.

On this particular matter there has been misinformation out there and I do not want anyone here to mislead anyone on this.

Rose2, thanks for the info, I've wondered how these work. I must confess I earlier thought that a blood thinner literally thinned the blood.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby concerned » Fri Aug 06, 2010 5:58 pm

Okay, well I wasn't trying to mislead anyone. I know that there was 1 death at least somewhat related to the procedure, and some other emergencies, and I think so does most everyone else here.
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Postby garyak » Sat Aug 07, 2010 12:45 am

I am another that wished I had discovered TIMS waaayyyy before May of 2010. I have learned vast amounts of valuable information here including hearing of the clinic that did my diagnostic testing 2 weeks ago.
This is a forum though, that should continue to welcome healthy debate because that will make this site much more valuable and credible.
Obviously this needs to be done in a civil way.
I feel my level of understanding of ccsvi, testing for it and venoplasty ,especially through Dr. Sclafani's thread , is infinitely greater than what I knew just a few months ago.
Every day I try to get on here for a while and sometimes for hours. I recommend it to all I meet with MS.
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Postby Billmeik » Sat Aug 07, 2010 4:19 am

I would say this forum is a more honest representation of the conflict in the medical world over ccsvi than the facebook world. I mean it's crazy the things doctors say for and against ccsvi. Why not patients?
Really it's good news that the honeymoon of early work is over and this is getting real criticism. It's like a new theory gets shot at by a firing squad and if it lives then it might be true. Taking some bullets now. Real world.
Debate not dogma.
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Postby jimmylegs » Sat Aug 07, 2010 4:48 am

debate is welcomed but in some cases the respect is gone and by the tone of many posts i've seen, there are quite a few users on thin ice re their accounts.
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