Did Stanford cancel it's study?

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

Did Stanford cancel it's study?

Postby lucky125 » Thu Apr 01, 2010 12:13 pm

I just came from my hematologist at Georgetown. He told me that Stanford is not going forward with it's study because there was a third adverse event.

Sounds far fetched to me. Anyone know anything about this?

I realize this is also the place where my own vascular surgeon informed me 4 days before my angioplasty that 2 people had DIED at Stanford. I had to set him straight.

We are far away over here on the east coast. Clearly news can get lost in translation as it crosses the country.

Please correct me if I'm wrong!
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
User avatar
lucky125
Family Elder
 
Posts: 173
Joined: Wed Dec 02, 2009 4:00 pm
Location: USA

Advertisement

Postby fogdweller » Thu Apr 01, 2010 12:33 pm

This is not an authoratative answer, so please anyone with first hand knowledge please weigh in.

That said, I don't think Stanford ever had a study. What stopped was Dr. Dake's willingness or ability to do the procedure at Stanford because of two adverse events (probably not technically "adverse events" because they did not occur in the course of a study.) One was a stent migrating to the heart necessitating open heart surgery, the other was a brain bleed secondary to taking cumadin which was part of the post-operative protocol.

A third event is possible since a stent breaking loose and migrating elswhere, for example to the heart, could happen as long as stents are in place out there. In fact, since the walls on veins could concievably expand and the stents loosen up, that would be a concern long term, but I have not heard of any such thing.

Cheer, do you know of anything at Stanford other than those two?
User avatar
fogdweller
Family Elder
 
Posts: 412
Joined: Tue Dec 08, 2009 4:00 pm

Postby cheerleader » Thu Apr 01, 2010 12:50 pm

Dudes...
rumors be gone :wink:
I spoke with Dr. Dake last week, the study is on. He's getting all the ducks in a row, and is quite excited. He has already selected the people to be involved, and is not recruiting. He does not want any more information divulged on line, and after the year he's had, I can understand why. Let's let Stanford be. There will be more information in the future, but unless your "sources" are speaking with him regularly, please let's not spread rumors on here.
thanks,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5031
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby fogdweller » Thu Apr 01, 2010 12:53 pm

Sorry. Didn't mean to spread rumor. I tried to clearly state the limitations of my knowlege. When I do that, people, please don't give it any more authority that I state.
User avatar
fogdweller
Family Elder
 
Posts: 412
Joined: Tue Dec 08, 2009 4:00 pm

Postby Rokkit » Thu Apr 01, 2010 12:56 pm

Thanks Cheer. I'm really glad he's moving forward. When I had my procedure, I was so looking forward to my 1 year follow-up so I could see how much more Dr. Dake knew about CCSVI. Lately, I'd been wondering if he was going to know anything new at all. It helps a lot to know the crazy uncle in the woodshed is forging ahead.
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 3:00 pm

Postby cheerleader » Thu Apr 01, 2010 1:01 pm

Rokkit wrote: It helps a lot to know the crazy uncle in the woodshed is forging ahead.


OK...I'm gonna share. Who can sue me? It's the truth...

You know, that quote was made off the cuff to someone he considered a friend. He also told that friend he was "off the record" and he could not speak "to the press." He trusted his friend to respect that, and then he sent that friend to me for an on the record interview. I was not a patient (no hipaa law regarding giving my name), I was a patient advocate. When the WSJ article showed up (with his pic, no less) with quotes that were never meant for press, we knew something was up. Low and behold, ANOTHER Stanford press release five days later, written by a reporter who had never written anything about MS before...but just so happened to know Mike Dake.

arghhh!!! Let's leave this man alone. He's a brilliant doctor, good guy and wanted to help people. No good deed goes unpunished.....
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5031
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby ozarkcanoer » Thu Apr 01, 2010 1:02 pm

Thank you cheer !!! You are very encouraging about Stanford. We are lucky to have you and Dr Dake.

ozarkcanoer
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby lucky125 » Thu Apr 01, 2010 1:16 pm

Thanks for clearing this up, Cheer. I didn't think that my doc could possibly know more that the people here, but I needed to be sure.

Sorry for causing any alarm!
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
User avatar
lucky125
Family Elder
 
Posts: 173
Joined: Wed Dec 02, 2009 4:00 pm
Location: USA

Postby Rokkit » Thu Apr 01, 2010 2:03 pm

cheerleader wrote:When the WSJ article showed up (with his pic, no less) with quotes that were never meant for press, we knew something was up.

Yeah the article sure gives the appearance that the reporter interviewed Dake on the record. Wow. Nice ethical reporting. These guys are ruthless.
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 3:00 pm

Postby ozarkcanoer » Thu Apr 01, 2010 2:22 pm

Many pundits are worried about the loss of newspapers in the USA and elsewhere. After seeing all the biased "news" stories in "news"papers about MS I am not worried. I get my news from Jon Stewart and Stephen Colbert, LOL. Oh, and the New York Times.

ozarkcanoer
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby Vhoenecke » Thu Apr 01, 2010 3:18 pm

God bless Cheer and Dr. Dake :D
User avatar
Vhoenecke
Family Elder
 
Posts: 332
Joined: Sat Dec 12, 2009 4:00 pm
Location: Rosetown, Canada

Postby catfreak » Thu Apr 01, 2010 5:28 pm

I will be going back to Stanford for my 1 year check-up. I know I could go somewhere else but I want to stick with Dr Dake. I am seven months out from the procedure and that means just 5 months til my 1 year! So hard to believe.

Thank you Cheer for all you do!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 3:00 pm
Location: Mississippi

Postby gibbledygook » Fri Apr 02, 2010 2:53 am

Ditto!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
User avatar
gibbledygook
Family Elder
 
Posts: 1414
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Postby CRHInv » Fri Apr 02, 2010 7:51 am

Me too!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
User avatar
CRHInv
Family Elder
 
Posts: 402
Joined: Sun Aug 30, 2009 3:00 pm
Location: Chandler, AZ

Surfing CCVI

Postby jerkbutt » Sat Apr 03, 2010 7:46 pm

As Hollys Boyfreind aka Husband for 13 years Im just curious about all these statements and rumors.Holly did it for research she was desperate for sympton relief from her progressive ms.She told me many things about her feelings.she was happy about going to stanford for this trial of stents or ccsvi.She hated this @@@@@@ disease.To me she was Chuck Yeager of expermental piliots.I Miss Holly Its not fun coming home from work to a empty house.If you need info on Holly e mail me.Take care everyone have faith.John aka jerkbutt[/b]
User avatar
jerkbutt
Getting to Know You...
 
Posts: 15
Joined: Wed Dec 16, 2009 4:00 pm

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service