Shot down in CO

mrhodes40 · Post by **mrhodes40** » Fri Nov 13, 2009 4:20 pm

Well the documentary is coming out soon and will be available so they may get a few more calls

Whaddaya think??

jamit · Post by **jamit** » Fri Nov 13, 2009 4:47 pm

I don't see why you need to start bugging anybody. Why as a patient would you want to run around promoting this when the data eventually will speak for itself along with peer reviews and other articles. After all you may think it is all clear cut, but many things may appear that way and more data is still needed.

BZW I have submitted my data to Stanford and am waiting for a date with them and will have the surgery, but I sure would have wanted to wait for better data if I was just diagnosed. Now having had MS for many years and having researched this and other treatments for years I am fine with my choice, but I would not recommend this for newly diagnosed.

ozarkcanoer · Post by **ozarkcanoer** » Fri Nov 13, 2009 4:59 pm

jamit... I know from personal experience that patients advocating for their own health, just like all of us on this CCSVI forum, means somebody WILL LISTEN.... the squeaky wheel and all that. I have been running around like a chicken here in St. Louis talking to scientists and doctors about CCSVI. THEY DID NOT KNOW ABOUT THIS BEFORE I TOLD THEM !!!!! Before cheerleader learned about Zamboni and talked to Dr. Cooke and Dr. Dake about Zs research, CCSVI was NOTHING among neurologists. The idea of venous involvement in MS was suppressed in the 1980s. We patients are the ones who are suffering. To coin a phrase : "YES WE CAN" !!!!!!!!!!!!!

I commend everyone who spreads the word. The more people know about it the more attention it will get and the faster it will be accepted or rejected. Just think of 1000 neurologists and vascular disease experts talking about the possibilities instead of just 10 !!!!!!

chrishasms.... Sorry you got shot down. I'm hoping things will turn around for you soon !!

Sharon · Post by **Sharon** » Fri Nov 13, 2009 6:21 pm

Chris -

I am taking a different view point on the people at Anschutz ( and by the way, I had emailed the cardiology dept all of the research early this summer.) You may think you were shot down - but they listened. They may not be willing to test or treat you..... for right now, that is okay. You put the research in their hands (again!). I have done the same with the MS neuros at Anschutz -- and I have asked about CCSVI in a public forum. My point is, the Anschutz Center has the info -- we just have to keep reminding them to review it. There are many more doctors in Colorado -- right now I am focusing on the interventional radiologists.

It is great that you took the time and effort to get an appointment.
Sharon

chrishasms · Post by **chrishasms** » Fri Nov 13, 2009 9:04 pm

GiCi · Post by **GiCi** » Sat Nov 14, 2009 5:42 am

chrishasms wrote:Hey I am my own best advocate. I see no reason to expect a doctor to contact me about anything so I went and stepped out of the box myself rather than relying on a bunch of docs who have their pockets being lined by big pharma.

chrishasms, I think you should not openly make such accusations!
GiCi

chrishasms · Post by **chrishasms** » Sat Nov 14, 2009 8:49 pm