Dr. Dake's study not beginning yet

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

Post by blossom »

this is wonderful news. dr. dake being the first dr. in the usa to pay attention to ccsvi and do the procedure will never be forgotten. now, finally he can get back in the ballgame in a bigger way. anyone fortunate enough to be in his trial i truly wish you all the best. i can't wait to hear all the success stories.

we're getting closer. thanks to all these great doctors and cheerleader's CCSVI ALLIANCE.
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coach
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Post by coach »

I think I know of a young man whose parents my husband and I have met. His parents got the info from me and made the contact with Dr. Dake and his office. I think he is included. At least he had gotten asurance that he was. Hope it works out for him. He lives in Reno.
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magoo
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Post by magoo »

Hi everyone,
I just got off the phone with Alex (Dake's assistant) and she asked me to come here and tell everyone that this information is incorrect. The trial has not begun. I am so sorry to be the bearer of bad news. I want more than anyone for my hero Dr. Dake to begin to prove the link between CCSVI and MS. Unfortunately, Alex says it is not happening yet. She has been swamped with calls and feels terrible about having to explain this is not true.
Please don't shoot the messenger:0(
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
Cece
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Post by Cece »

That is disappointing! Did she give any indication of when it would begin?

I checked back, on the Facebook site it was someone saying that "it was reported at today's CCSVI-MSketeer meeting that local people are being called and scheduled to come in and begin Dr Dake's much anticipated clinical trial!!" and then a discussion of his trial design. :( :(

I'll change the header of this thread to reflect the news. Thanks magoo. Sorry Alex....
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MrSuccess
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Post by MrSuccess »

let's all check and double check our sources before making any future ground breaking announcements . :idea:

facebook posts ........ not really a good source .......

as for MSkateers ....... same thing applies.



The road to Hell ...... is paved with good intentions .



Let us be more careful ..... in advancing CCSVI news.



Mr. Success
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HappyPoet
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Post by HappyPoet »

Mr. Success,

Cece does an absolutely fantastic job with all she does here. She has brought more research and information to TIMS-CCSVI than you or I could ever hope to bring. She always strives for perfection and works diligently to always show both sides of an issue, to be balanced in her posts. She explains complex processes and theories in ways that I, with significant cognitive disabilities, can understand, and she is always available to answer questions. She has the highest standards and strongest morals and ethics of anyone I know, and she covered everything that needed saying in her last post -- she deserves our support and thanks.

Cece, as Tony the Tiger would say... "You're doing GRRRRRREAT" :D
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MrSuccess
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Post by MrSuccess »

Pam - I agree with all you say . You do not have to bring to my attention all of Cece's good deeds and good work.

Sometimes in the effort to help and promote Dr. Zamboni's great discovery ....... some research and homework ...... get's overlooked as
we rush to spread the good news.

So ...... a lesson for us all ........... Be Cautious ......


I think that's a fair comment , and Cece knows my opinion of her and the great work she does....




Mr. Succcess

See hoew easy it is to make mistakes ? :wink:
Cece
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Post by Cece »

Did you hear that the "mouse model" is actually a mouse model, aka a cute little mouse that knows how to vogue? ;)

HappyPoet and MrSuccess both know that I hold them in high esteem. Being cautious is a good take-away, I think.
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MrSuccess
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Post by MrSuccess »

mice ... mice ... mice .... :roll:

Lot's to look forward to .... can I ask .... the mice thing .... Who is this experiment aimed at convincing ?

Why bother with choking the little buggers ..... we have plenty of Test Subjects already . :wink:

Anyway ....... we all learned something important ...... no matter what information you are given ........ try to verify it .

I'm starting to take on the appearance of the CCSVI Police :wink:



Mr. Success
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CureIous
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Post by CureIous »

Cece wrote:That is disappointing! Did she give any indication of when it would begin?

I checked back, on the Facebook site it was someone saying that "it was reported at today's CCSVI-MSketeer meeting that local people are being called and scheduled to come in and begin Dr Dake's much anticipated clinical trial!!" and then a discussion of his trial design. :( :(

I'll change the header of this thread to reflect the news. Thanks magoo. Sorry Alex....
Sorry you got victimized by the facebook monster, I'm sure it will kick off soon enough though so all the well wishes stand! That's one of the problems with FB, people seem to regress back to High School days when it was "did you hear" or "they heard". We recently went through a very similiar situation here, when a young girl, who was a friend's granddaughter, was killed crossing the railroad tracks. I heard from young, and old alike EXACTLY what happened, trouble is, they were all wrong, at least according to the eyewitness that was there. Tried to set the record straight, but by then, facebook, the comments section under the newspaper article, all replicating the "facts", it was quite incredible to watch the "facts" get out in such timely fashion, (even my new neighbors who've lived here two weeks "knew" what happened almost instantly) all except those from the source, the eyewitness(es). Anyways, it will happen, that much we know, just call this a premature celebration, the pre-party.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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cheerleader
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Post by cheerleader »

Just to clarify-
We're pretty careful on the FB page Marie and I administer. That was a post made by another person, not me or Marie...and I didn't bring it over here because I hadn't verified it. Jeff was up at Stanford last week, and now we know exactly what's going on, but have been asked to keep online talk to a minimum until all system's go.
OK? Thanks,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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bretzke
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Post by bretzke »

Does anyone know the estimated cost of the Stanford study?

$6,000,000 sticks in my head, but I know that can't be right...

Brian
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