UPDATE to list of studies and doctors

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

UPDATE to list of studies and doctors

Postby suzq77 » Thu Apr 22, 2010 7:41 am

Hello all!

I'm trying to gather data on where studies are happening in the US for the Interventional Radiologist I'm working with. I need doctor names, contact info, etc.

So far, I know there are open/pending studies at Stanford, Georgetown, Buffalo and Albany and possibly Baltimore and Detroit.

I also know of someone who had the procedure done in Philadelphia by a Dr. Boone.

I'm ding my best to cobble everything together, but there is so much info out there - and not in one, neatly cumulative location.

Any help would be greatly appreciated!

Thanks,
Susie
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Re: UPDATE to list of studies and doctors

Postby Rokkit » Thu Apr 22, 2010 7:52 am

suzq77 wrote:So far, I know there are open/pending studies at Stanford, Georgetown, Buffalo and Albany and possibly Baltimore and Detroit.

That's the problem. Lots of things pending, nothing actually happening. Causing me to wonder how pending any of these things really are.
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Postby mshusband » Thu Apr 22, 2010 8:12 am

Haven't we made it clear why we SHOULDN'T post doctors names?

I know everyone is anxious to get this done reading the results of people like Livabird ... but posting doctors names is almost guaranteeing they'll get closed down ... and then NOTHING will be happening - not even PENDING.

Come on people ... let's get on the same page and do this through private messages and stuff ...

EDIT - I don't know SuzyQ77 from anyone ... (and I'm not saying she is - BUT) for all I know she could be someone from Biogen looking for Doctor's names and contact information to call their hospital and get them shut down as soon as she gets ahold of it. MAYBE she has good intentions ... who knows (do you KNOW her)? We've got to be careful though - because even if they're not posting ... others can see it.

That's all I'm trying to warn about folks ... this is the internet, and once that information is out there ANYONE can get it (for good, and for bad).

Take heed ...
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Postby frodo » Thu Apr 22, 2010 1:37 pm

mshusband wrote:Haven't we made it clear why we SHOULDN'T post doctors names?

I know everyone is anxious to get this done reading the results of people like Livabird ... but posting doctors names is almost guaranteeing they'll get closed down ... and then NOTHING will be happening - not even PENDING.

Come on people ... let's get on the same page and do this through private messages and stuff ...

EDIT - I don't know SuzyQ77 from anyone ... (and I'm not saying she is - BUT) for all I know she could be someone from Biogen looking for Doctor's names and contact information to call their hospital and get them shut down as soon as she gets ahold of it. MAYBE she has good intentions ... who knows (do you KNOW her)? We've got to be careful though - because even if they're not posting ... others can see it.

That's all I'm trying to warn about folks ... this is the internet, and once that information is out there ANYONE can get it (for good, and for bad).

Take heed ...


Just for the defense of SuzyQ77:
Joined: Apr 13, 2008

Anyway mshusband is right. Let's use no names by now. Maybe is enough to write the city in which the new doctor is located (no hospital names either, of course)

Let's hope that someday we will be able to free all the information with no fear.
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No, I don't work for Biogen

Postby suzq77 » Thu Apr 22, 2010 2:17 pm

I have MS. I've had it for almost 9 years. I am, just like everyone else here, trying to make this happen in my hometown so I don't have to travel far far away to find out that I have CCSVI and get it treated.

I don't work for Biogen. I'm a Recruiter for an HR Outsourcing Firm - if you don't believe me then go here: http://www.linkedin.com/profile?viewProfile=&key=10652431&locale=en_US&trk=tab_pro. And a freelance writer. And a musician. And a wife. MS kidnapped me at the tender age of 24 and I'm fighting it. That's why I asked.

If anyone has any info they'd like to share with me - don't post it here. Just send a message to susieu@gmail.com. Or don't. It's up to you.

Thanks for all of your help and support!
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Postby ozarkcanoer » Thu Apr 22, 2010 2:48 pm

Hi all...

Here is a link where you can find up-to-date information on where CCSVI is being tested and treated :

http://csvi-ms.net/en/content/ccsvi-examination

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