Dr Haacke's website is soliciting volunteers !!!!!!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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CRHInv
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Post by CRHInv » Wed Oct 21, 2009 5:08 pm

Sharon, thanks for explaining!
I am hoping for stents 11/10. After I get through that I will look into signing up too.
Way to go to all who have volunteered!
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.

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ozarkcanoer
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Post by ozarkcanoer » Wed Oct 21, 2009 5:13 pm

OK, so here's one of the top neuroradiology guys at Washington University School of Medicine and Barnes/Jewish Hospital. I have a mailing address for him I found online. Do I just sit right down and write him a letter ??? Will he even read it coming out of the blue !!!!??? And what a great name he has, LOL.

......................................................


DeWitte Talmadge Cross, III, MD
Current Position
Professor, Radiology
Division of Diagnostic Radiology
Neuroradiology Section
Professor, Neurological Surgery
Director, Interventional Neuroradiology, Barnes-Jewish Hospital and St Louis Children's Hospital

Specialty Areas
Endovascular Neurointerventional Surgery (ENS)
Interventional Neuroradiology
Neuroradiology
Neurovascular Disorders
Radiology

Awards

Listed in Best Doctors in America, 1996 - 2009 (Best Doctors, Inc)

Listed in America's Top Doctors, Castle Connolly Medical Ltd, 2001 - 2008

U.S. Navy Commendation Medal, 1987

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cheerleader
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Post by cheerleader » Wed Oct 21, 2009 5:18 pm

Ozark...
that's exactly what I did- just started writing docs "out of the blue" with the Zamboni research. I used e-mail. Every one of them responded. Not all positively, but it only took one interested Dr. Dake. Now there is so much more information. Send links to the Jacobs/Un. Buffalo press release, the Zamboni research and Dr. Haacke's new site. Name drop. Haacke is huge in the radiology world....Dake in the endovascular world. Keep it short and sweet- you'll get responses. I promise!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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bestadmom
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Post by bestadmom » Wed Oct 21, 2009 5:26 pm

Ozarkcanoer,

Check your pm's. I just sent you the email I send out and I've gotten some responses. I hope you do too. Go for all of the ones you can find on the school's website. It's important to get them talking.

Michelle

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ozarkcanoer
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Post by ozarkcanoer » Thu Oct 22, 2009 5:42 am

Well it's Thursday morning and I went to ms-mri.com and the "be a volunteer button NO LONGER WORKS !!!! Either the responses yesterday were just too much for them to handle or there is some other glitch. Well I guess it is good that some of us got to respond. I am going to continue to keep an eye on this. I am also mulling over how to approach someone at Washington University School of Medicine.

Ozarkcanoer
dxed Jan 2008, RRMS, Copaxone

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Needled
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Post by Needled » Thu Oct 22, 2009 5:47 am

Hi Ozark, I just tried it, and mine still works. Are you at a different computer than you were yesterday? My PC at home does some stuff differently than the one at work. For example, I can't some videos and pictures at work that people post, but I can see them at home. And there's some stuff at work that appears differently at home.

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ozarkcanoer
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Post by ozarkcanoer » Thu Oct 22, 2009 5:50 am

:oops: :oops: I just tried again and it works now... :oops: :oops:

Maybe I made a mistake or maybe they just disabled it for awhile :D :D

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Inge67
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Post by Inge67 » Thu Oct 22, 2009 6:30 am

Great Tip!

I just signed up and posted this news also on the Dutch forum about CCSVI.
Hopefully this helps Dr. Haacke to convince parties to join in his research.

I got an e-mail from him yesterdag evening in which he told me that he will be visiting Europe in November to try to get some sites there to get involved. He especially mentioned the Free University in Amsterdam. I am a patient there and hopefully he will convince them to join in the project!

Things are developing very quickly he said. Todays post is a pretty good example of that! :D

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cah
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Post by cah » Fri Nov 06, 2009 7:02 am

Seems that on Dr. Haacke's website, the "be a volunteer"-Button is gone. I hope this is because he has already enough. Can anyone with contact to Dr. Haacke check why?

Just decided to be a "control" volunteer, if that's possible from germany. If not, well... never went on a trip to the states before... :wink:

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ozarkcanoer
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Post by ozarkcanoer » Fri Nov 06, 2009 7:05 am

cah... go to the "contact us" link on the front page of Dr. Haacke's website. This website seems to change daily and it becomes confusing even for me to follow..... and good luk !!!!!!!!

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cah
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Post by cah » Fri Nov 06, 2009 7:12 am

But the "contact us" site doesn't say that they're looking for volunteers... so there has to be a change, I think?

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ozarkcanoer
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Post by ozarkcanoer » Fri Nov 06, 2009 7:13 am

cah.. I'll go check... BRB

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ozarkcanoer
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Post by ozarkcanoer » Fri Nov 06, 2009 7:15 am

OK cah... go to the "Research Protocol" button.... I wish those guys wouldn't keep changing their website, LOL.

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cah
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Post by cah » Fri Nov 06, 2009 7:21 am

Ok, I've found it. The "be a volunteer"-Button was much more prominent, though.

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ozarkcanoer
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Things are moving along !!!!

Post by ozarkcanoer » Sat Nov 07, 2009 6:49 am

I visited my PCP yesterday and explained the MS-MRI procedure to him and gave him a couple more CCSVI documents. My PCP (who is very well respected in St. Louis) said "this is the first time a patient ever came to me and presented information that I just don't know anything about" !!! He gave me the OK and faxed Dr. Haacke's research coordinator the pertinent information. I have a form to take to the lab for the GFR procedure. I have Fedexed my latest brain MRIs to Detroit and they confirmed that they received them.

My husband and I have reservations at The Inn on Ferry Street on Dec 6th and 7th. It's very close to Gr. Haacke's facilities.

Anyone from Detroit ????

I amm "rarin to go" !!!!!!!!!

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