Dr. Dake's study not beginning yet

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

Dr. Dake's study not beginning yet

Postby Cece » Sun Feb 20, 2011 3:56 pm

EDITED TO ADD: per magoo's post on page 2, from Dr. Dake's assistant Alex, the study has not yet begun.

People are getting called in to begin Dr. Dake's study. This is exciting! He is taking patients with RRMS only, less than 65 years old, with some mobility (enough to get in and out of the MRVs - I am getting this all from a post on Facebook). Because some patients will be treated by Dr. Katzen in FL, that makes it a multicenter trial. One third of patients will get sham procedures. Sham will only go for three months, then they will get real procedures. Results will be measured after that for 2 years. It is a 6 million dollar study. Here is wishing him quick and significant results!!

If anyone knows more and can add to this, please do. Has Dr. Dake taken a position on size of balloon or pressure of balloon? If a patient restenoses during the trial, would they be retreated?
Last edited by Cece on Tue Feb 22, 2011 1:34 pm, edited 1 time in total.
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Postby CureIous » Sun Feb 20, 2011 3:59 pm

Very exciting news Cece thanks for posting. This is about as close to a true double blinded placebo controlled study we can get considering what's involved with the surgery vs. pill popping trials. Fantastic, Stanford pioneers leading the way AGAIN.
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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Postby Cece » Sun Feb 20, 2011 4:07 pm

CureIous wrote:Very exciting news Cece thanks for posting.

gotta give credit, Cheer posted about it yesterday. These sorts of things get missed when they're not a thread of their own, and this is big news. I first started reading here in December 09, so that entire time there has been talk and wait for this study. Very glad to see it happening.
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Postby Shannon » Sun Feb 20, 2011 4:30 pm

OMG>>>OMG>>>OMG!!! I am on the list! :o I got an e-mail from them about a month ago saying that they still have me on the list and that as soon as they get the study going they will contact me. This is very exciting news...I have been waiting and envying everyone here who has already had this done and I am ready to go. Thank you for posting this.
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Postby MrSuccess » Sun Feb 20, 2011 5:52 pm

number of participants has slipped my mind ....

how many ?

This is incredibly exciting to see Dr. Dake finally get to proceed .




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Postby CenterOfGravity » Sun Feb 20, 2011 6:08 pm

This is awesome, and I wonder what the treatment protocol will be. Think of how different it would have been 18 months ago, so much has already been learned about treatment (anecdotally or not, much has been learned and shared amongst the IRs who are the pioneers in this).
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Postby Cece » Sun Feb 20, 2011 6:19 pm

80 people in the study :D
COG, agreed, lots of changes in the last year, & I think when we share our experiences they're anecdotal but when the docs share them, they're clinical evidence
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Postby Shannon » Sun Feb 20, 2011 7:11 pm

I sent Alex an e-mail tonight in response to the e-mail that was sent to me, so fingers crossed I will be hearing something soon. I qualify based on the trial criteria. The only thing not in my favor is distance. I live in Michigan. Does anyone know if they are trying to include the travel expenses as part of the trial?
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Postby MrSuccess » Sun Feb 20, 2011 8:30 pm

Shannon - I hope you are one of the fortunate 80 . Was living in and around Stanford not one of the Dake criteria ?

I seem to remember the short time given for the study results roll out.

This is going to be great .

Once again ..... I hope you get in on this ..... as you have been led to believe.

I am thrilled for you. Post us updates ......if you are allowed .


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Postby ErikaSlovakia » Mon Feb 21, 2011 1:09 am

I am really glad I could read this information.
The dean Mr. Philip A. Pizzo, MD wrote me an letter March 1, 2010 telling me that yes they would do a CCSVI study at Stanford.
It took almost one year but it is here.
Nice :)
I am happy for Dr. Dake and of course all patients!!!
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Last edited by ErikaSlovakia on Tue Feb 22, 2011 4:17 am, edited 1 time in total.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby CureOrBust » Mon Feb 21, 2011 3:40 am

CureIous wrote:Fantastic, Stanford pioneers leading the way AGAIN.
One of my Dr's that performed a venogram & ballooning on me has been talking / attempting to get approval for what sounds like a very similar study, for quite a while; the ethics committee in his hospital held him back. I heard a month or so back that his approval came through :) When he explained his plan for the study to me about a year ago, I think he was talking about patient numbers of 250, I think...
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Postby coach » Mon Feb 21, 2011 4:27 pm

Glad to hear they are moving forward with the study. Happy for Dr. Dake and the patients. Makes me realize how fortunate I was. Some of the first group at Stanford were SPMS so we would have been out of luck. We were already out of options. I know the PP and SP MSers don't seem to do as well but we (at least I) did have some benefits (more energy and fewer headaches and I think no more HBP - am keeping a check on that). Guess I could have tried the novantrone that my neuro recommended. Then maybe I would be on the waiting list for a heart transplant later on. Who knows. Guess I'm being facetious.
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Postby Cece » Mon Feb 21, 2011 4:53 pm

If RR patients are getting the most noticeable results, then it makes sense to limit the study itself to RR patients, just to try and capture results. I don't think it reflects at all on whether or not people with PP or SP should pursue the treatment outside of the study, from the many IRs now performing it. (IMO, everyone with CCSVI should pursue getting it treated, regardless of what the comorbidity is. My own improvements reflect a likely hypoxia of the brain that I had been living with since birth, give or take.)
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Postby Katie41 » Mon Feb 21, 2011 4:53 pm

It's difficult not being able to do what you were destined to do! So happy for Dr. Dake that he has finally gotten the go-ahead! And, happy for all the people who will benefit from his expertise.

One year ago, I took a giant leap of faith and went to Katowice, Poland for the CCSVI procedure, after having been canceled at Stanford, Dec. 2009. If I had waited around for Stanford's study, I wouldn't have been considered for it.......too old.

I'm doing great, now, teaching my very active elementary 4th/5th/6th grade class full-time! I, along with Dr. Dake, am able to continue to do what I was destined to do.

Dr. Dake's early research greatly facilitated the "opening of doors" to treatment in some parts of the world. Here's to his new research opening the doors wide to treatment throughout the MS world worldwide!
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Postby coach » Tue Feb 22, 2011 8:54 am

I didn't mean to imply that I thought it was wrong for the study to limit the participants to only RR ms. I was just saying that I was glad I didn't vascillate about making a decision regarding the surgery and as a result I received the benefit.
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