Don't Dismiss CCVSI Yet, Expert Says

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Don't Dismiss CCVSI Yet, Expert Says

Postby Cece » Mon Jun 10, 2013 2:32 pm

http://www.medscape.com/viewarticle/805565

Still addressing delegates during the joint CMSC/ACTRIMS meeting, Dr. Rae-Grant emphasized the importance of not dismissing the possibility that CCSVI really does work.

"What if we're missing something? What if there is a vascular piece to this? What if there's a subset in which this means something? What if we're throwing the baby out with the bathwater?" And what if, down the road, it becomes clear that "we missed it," he said.

Neurologists should not be dismissive of a therapy that a good proportion of their patients are interested in and may even want to try, he added. "We can't throw it out; we don't have the data yet to dismiss it."
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Re: Don't Dismiss CCVSI Yet, Expert Says

Postby 1eye » Mon Jun 10, 2013 5:39 pm

Does the phrase: "wrong side of history" mean anything, or are we all merely more Internet floobydust? :wink:
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Re: Don't Dismiss CCVSI Yet, Expert Says

Postby cheerleader » Tue Jun 11, 2013 8:27 am

Dr. Rae-Grant has been working with Dr. Fox at the Cleveland Clinic for a couple of years on their CCSVI studies...they found intraluminal malformations, new valves in autopsied jugular veins of pwMS, and flow irregularities using multi-modal techniques. These researchers know there is something there....but they do not have the means or expertise to deal with venous malformations. Nor do they understand what treatment might provide. It was pretty brave of Dr. Rae-Grant to admit this at an MS conference. Dr. Steinman pretty much did the same thing on my FB page yesterday. He's not a venous specialist...his quote, "I'm not a surgeon. I'm doing what I can with my expertise."

So, CCSVI exists, but neurologists don't understand it. And that took four years and millions of dollars for them to discover. When Drs. Dake, Siskin, Zamboni, Sclafani, Hubbard and a host of others have been prepared to work with them and show them perfusion and blood flow changes after venoplasty.

Agree, 1eye...it's the wrong side of history, and while they fiddle, more lives are being burned up.
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Re: Don't Dismiss CCVSI Yet, Expert Says

Postby AMcG » Mon Jun 17, 2013 12:27 pm

This is another non-neurologist and non-vascular scientist making very sensible observations. The same was true of Trevor Tucker and Clive Beggs who both made very compelling presentations.

Elsewhere researchers can understand CCSVI but not neurologists. And they think of themselves as the 'intellectuals' of the profession!
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Re: Don't Dismiss CCVSI Yet, Expert Says

Postby newday » Mon Jun 17, 2013 3:18 pm

Dr. Alexander Rae-Grant is a neurologist. He was my neurologist in Pennsylvania until he moved to Cleveland.
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Re: Don't Dismiss CCVSI Yet, Expert Says

Postby MrSuccess » Mon Jun 17, 2013 3:34 pm

CCSVI 101 : [ heart ] --------- [ brain ] -----><----- [heart ]

>< = CCSVI

It's that easy to understand . Fix >< .
This cannot be done using DMD's.

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Re: Don't Dismiss CCVSI Yet, Expert Says

Postby Cece » Mon Jun 17, 2013 4:46 pm

newday wrote:Dr. Alexander Rae-Grant is a neurologist. He was my neurologist in Pennsylvania until he moved to Cleveland.

Did you ever talk about CCSVI with him, or did this predate CCSVI? Did he seem reasonable or empathetic?
It's good to see anyone take a stand against the usual neurologist "talking points" regarding CCSVI
No one, including us, including them, should discuss CCSVI as if the data is in when it isn't.
Last edited by Cece on Tue Jun 18, 2013 8:27 am, edited 1 time in total.
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Re: Don't Dismiss CCVSI Yet, Expert Says

Postby newday » Tue Jun 18, 2013 6:48 am

Hi Cece. It predates ccsvi but he was always talking about the research. I tried to email him but Cleveland would only give me a snail mail address. I guess I should follow through with that.
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Re: Don't Dismiss CCVSI Yet, Expert Says

Postby newday » Tue Jun 18, 2013 3:29 pm

My plan was/is to share my own ccsvi intervention and outcomes with him as I was treated at Georgetown in 2010.
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Re: Don't Dismiss CCVSI Yet, Expert Says

Postby Cece » Tue Jun 18, 2013 3:54 pm

newday wrote:My plan was/is to share my own ccsvi intervention and outcomes with him as I was treated at Georgetown in 2010.

I think it could only help for him to hear personally from patients he's known. It's all individual anecdotes, sure. But he knows you, and would be happy for you if you are doing well regardless of whether or not he accepts the basic concepts of CCSVI.
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Re: Don't Dismiss CCVSI Yet, Expert Says

Postby erinc14 » Wed Jun 19, 2013 8:05 am

if your feet are suddenly warm after years of being like ice would that be anecdotal if they could feel it ?
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Re: Don't Dismiss CCVSI Yet, Expert Says

Postby drsclafani » Thu Jun 20, 2013 2:48 pm

erinc14 wrote:if your feet are suddenly warm after years of being like ice would that be anecdotal if they could feel it ?

it is anecdotal. Anecdotal only means that it is an individual response, not part of a series in a trial.
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Re: Don't Dismiss CCVSI Yet, Expert Says

Postby Cece » Thu Jun 20, 2013 6:48 pm

I was thinking that if what Dr. Sclafani says is correct, then case studies would be anecdotal, and those can be published and peer reviewed and don't fit my understanding of anecdotal.
But I thought, I should google that first.
an·ec·do·tal [an-ik-doht-l, an-ik-doht-l]
adjective
1. pertaining to, resembling, or containing anecdotes: an anecdotal history of jazz.
2. (of the treatment of subject matter in representational art) pertaining to the relationship of figures or to the arrangement of elements in a scene so as to emphasize the story content of a subject. Compare narrative ( def 6 ) .
3. based on personal observation, case study reports, or random investigations rather than systematic scientific evaluation: anecdotal evidence.

And case studies are listed specifically as an example of anecdote. Huh.
http://dictionary.reference.com/browse/anecdotal
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