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

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Postby Lyon » Mon Jan 24, 2011 2:47 pm

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Postby Lyon » Mon Jan 24, 2011 3:16 pm

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Postby 1eye » Mon Jan 24, 2011 3:53 pm

"We need to work together to encourage a united message for the MS world," said Burks.


Too f-ing late.

I've never seen a stupider more bellicose example of working against working together than madman Rose and the self-glorifying nonsense he calls a blog.

If he ran things, people would work together only by accident, and be jailed as soon as he became aware of it.

Give us a break, and don't rub salt in by passing on the observation when you see any journalistic mistakes like quoting him. Quoting Osama Bin Laden would be more appropriate and enlightening.
"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 Lyon » Mon Jan 24, 2011 4:19 pm

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Postby Cece » Mon Jan 24, 2011 4:43 pm

During the session, Zamboni suggested the evidence of the many observational studies might be sufficient to convince interventionalists and MS experts of the treatment benefits, but the perception right now is that only a randomized, controlled, clinical trial will be good enough to convince the neurological community. Dr Martin Leon (Columbia University, New York), a member of the panel discussing the treatment, agreed. While registries might work, a randomized, controlled trial is needed to convince everybody, he said

I am not sure why we need to convince the neurologists. "Registries might work"? Bring on the registries. I believe as the IRs gain skill at the CCSVI procedure, the neurologists will see the benefits in their own patients. Progressive patients are the most clinically convincing, if functions expected to be lost forever are regained.

Thanks for linking to this, Lyon. Lots of ISET info in there.
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Re: Should interventionalists treat MS?

Postby NHE » Mon Jan 24, 2011 4:51 pm

Lyon wrote:I hadn't noticed the lone comment earlier.

Dr Rose wrote:# 1 of 1

January 24, 2011 02:37 (EST)



Colin Rose

"CCSVI" is junk science.
There are now at least four published studies using magnetic resonance angiography showing the "CCSVI" does not exist. Blockages in neck veins of any sort do not raise intracerebral pressure and, therefore, cannot cause brain pathology. The "liberation" treatment, dilation of internal jugular stenoses, is a very profitable scam.

No more time or money should be wasted on this charlatanry


Both you and Colin Rose should know better. Magnetic Resonance Angiography (MRA) examines the arteries. Of course it's not going to pick up any problems with the veins. That's pretty obvious. It's likely that Mr. Rose is just using this medical terminology in order to sound authoratative.

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ccsvi

Postby zinamaria » Mon Jan 24, 2011 5:09 pm

The topic of this thread is misleading. Interventionalists, such as Dr. Sclafani, are not treating MS, they are treating CCSVI.

z
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Re: ccsvi

Postby IHateMS » Mon Jan 24, 2011 5:13 pm

zinamaria wrote:The topic of this thread is misleading. Interventionalists, such as Dr. Sclafani, are not treating MS, they are treating CCSVI.

z


where is the like button?
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Postby blossom » Mon Jan 24, 2011 5:53 pm

zinamaria-you said it right. if it happens to improve symtoms they named ms then it is a good thing also.

you would think the ones who have failed miserably in treating what they call ms would be thrilled that treating ccsvi helps some of us that have the symptoms they call ms. after all, haven't we all heard this stated to us some time or another, that we are here for you-we want to help.

ok, if they really want to help, why don't they put their money where their mouth is. who cares if it's a ir, a vasc. dr., a chiropractor or even a neuro. as long as there are positive results. oh, it slipped my mind, most neuro.'s feel it's their way or no way.












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Postby Lyon » Mon Jan 24, 2011 6:17 pm

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Postby CCSVIhusband » Mon Jan 24, 2011 6:24 pm

Who cares?

What's your point with this thread?

Ask the people around the world (thousands now) who have had CCSVI liberation ... see how many would recommend it to others with venous issues and MS ...

I think you'll find a bunch of very satisfied customers - and customer feedback - regardless of "GREAT" improvements in MS symptoms or not ...

I think that's the true test. Those with "MS" who were liberated.

Why do you feel YOU should tell people what to do? Considering you have no experience with MS, in combination with CCSVI, and seem to dismiss everyone who has experience with both ... ???

Just curious .... maybe I should change my name to "curious"?
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Postby Cece » Mon Jan 24, 2011 6:26 pm

Lyon wrote:Consider that the following is taken straight from the CCSVI.org site, it's not believable that trying to distance CCSVI from MS is anything more than a smoke screen

To me it's logical to separate the two.

In varicose veins, when they cause skin lesions, you don't say that the IR is treating skin lesions. No, the IR treats the varicose veins.

So with CCSVI, the IR is not treating the lesions of the CNS that constitute MS. No, the IR treats the blockages known as CCSVI.
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Postby scorpion » Mon Jan 24, 2011 7:50 pm

CCSVIhusband wrote:Who cares?

What's your point with this thread?

Ask the people around the world (thousands now) who have had CCSVI liberation ... see how many would recommend it to others with venous issues and MS ...

I think you'll find a bunch of very satisfied customers - and customer feedback - regardless of "GREAT" improvements in MS symptoms or not ...

I think that's the true test. Those with "MS" who were liberated.

Why do you feel YOU should tell people what to do? Considering you have no experience with MS, in combination with CCSVI, and seem to dismiss everyone who has experience with both ... ???

Just curious .... maybe I should change my name to "curious"?


If we want to find success stories we can click on the many posted stories on the CCSVI thread however if we want to read about the cases where "liberation" did nothing there is a single thread at the top of the forum where people are "allowed" to post their results. No one can make heads or tails about what is called CCSVI and the liberation procedure because of the miracle stories of people walking after having no use of their legs for tens years, people running marathons after not being able to run 100 yards, etc. that are skewing reality. The researchers involved hope that the liberation procedure helps alleviate some symptoms of MS, specifically fatigue and cog fog. It looks like the myth of a "miraculous cure" is being perpetuated through the internet and it is a shame because if there is anything positive about being treated for CCSVI how in the world will we ever know????
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Postby cheerleader » Mon Jan 24, 2011 8:17 pm

Bob, Scorpion, whoever wants to hear a doctor who is studying this explain what we know and what we don't know--

Please, listen to Dr. Michael Dake discuss this in our new video--

‎"In my view, venous obstruction is a promoter for MS, like many other things are promoters for MS .... but what has people excited (about CCSVI) is that this promoter is reversible."


www.ccsvi.org
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Should interventionalists treat MS?

Postby concerned » Mon Jan 24, 2011 9:22 pm

NHE wrote:
Lyon wrote:I hadn't noticed the lone comment earlier.

Dr Rose wrote:# 1 of 1

January 24, 2011 02:37 (EST)



Colin Rose

"CCSVI" is junk science.
There are now at least four published studies using magnetic resonance angiography showing the "CCSVI" does not exist. Blockages in neck veins of any sort do not raise intracerebral pressure and, therefore, cannot cause brain pathology. The "liberation" treatment, dilation of internal jugular stenoses, is a very profitable scam.

No more time or money should be wasted on this charlatanry


Both you and Colin Rose should know better. Magnetic Resonance Angiography (MRA) examines the arteries. Of course it's not going to pick up any problems with the veins. That's pretty obvious. It's likely that Mr. Rose is just using this medical terminology in order to sound authoratative.

NHE


Professionals in the field seem to be able to use the MRA/MRV thing interchangeably, as in this article: http://www.aetna.com/cpb/medical/data/1_99/0094.html
which to me, implies that it is the same technology and that it probably would pick up problems with the veins. I think what matters is what your specifically looking at and not how you're looking at it.

Many people still talk about angioplasty in CCSVI (e.g. "Angioplasty for All") Shouldn't they know better, being self professed CCSVI specialists and all?
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