spreading the ccsvi word

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

Postby Sharon » Sat Oct 24, 2009 8:31 am

bestadmom wrote:
The doctors currently involved in CCSVI are very well known and respected in their fields - published and accomplished. The doctors who have expressed interest are from the same ilk. These doctors are the leaders in their fields, not followers, and we need them to know what is going on


Exactly. It is one doctor at a time. And, it is not only in the neurological, vascular, and radiology community. My chiroprator who has about 50 MS patients and who gives monthly seminars is talking about CCSVI (he has also called and spoke with Dake). I gave the research to my dentist - he is getting the word out--quite a bit of interest from his dental associates; my GP (who also has had conversations with Dake) is spreading the word to her colleagues.

I am in the process of making business cards with the website links on them and my email address for follow-up information. Wish I would have had them the other night.

When the Univ of Buffalo had its press release, I sent out a global email to just about everyone in my contact list with the link to the press release. I asked the contacts to forward the email on to anyone who they thought might be interested. I have spent the last week on the computer---I have new cyber MS friends who found out about CCSVI because of the email. Two MS'rs have signed up for the Univ of Buffalo study; others are reading the research and asking questions; one has called Dr. Dake's office.

I think the saying goes "if you throw pebbles in the pond, you eventually make waves" :) :)

Have a great weekend everyone! I'm off to watch the grandkids play soccer.

Sharon
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Postby bestadmom » Tue Oct 27, 2009 2:28 pm

I posted this for the UK people looking for doctrs and thought you all might to scan it for your outreach efforts.

When we built our list of interventional radiologists to email in the NE, we felt we'd have a better shot of getting someone's attention if they knew Dr. Dake. We mention him in our emails, along with Zamboni, Haacke, and the team at SUNY Buffalo.

Google the name of every doctor on this list and contact the ones in our area. This is a very pretigious group.
http://www.springerlink.com/content/j82 ... pdf?page=1

Addl links:
http://www.northpointdomain.com/aboutus ... id=2&pop=2 (Dr. Dake is on their advisory board)http://www.asnr.org/asnr/excomm.shtml#TOP
http://members.sirweb.org/index.cfm
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Postby Sharon » Wed Oct 28, 2009 10:45 am

On October 27th, Dr.Zivadinov, Univ. of Buffalo was the acting program director for a seminar "Advanced Imaging Techniques in Multiple Sclerosis".
http://www.bnac.net/wp-content/uploads/ ... m_2009.pdf

According to an attendee of the seminar, Dr. Zivadinov's talk on CCSVI had a "cool" reception --- doctors are waiting for further data. Dr. Z plans on having 500 participants in the study by Jan 2010.

The decision by Univ of Buffalo to start reporting testing results in November (instead of waiting until study is over in 2 years) is a smart move. They are keeping the CCSVI data active and in front of doctors - there will be an ongoing two year conversation.

Sharon
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Postby bestadmom » Wed Oct 28, 2009 11:07 am

Boy would I have loved to be a fly on the wall. I'm curious exactly who the attendees were.
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Postby bluesky63 » Thu Oct 29, 2009 7:06 am

Anyone else trying to reach DC-area physicians?
Last edited by bluesky63 on Sat Feb 06, 2010 9:51 am, edited 1 time in total.
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Postby ozarkcanoer » Thu Oct 29, 2009 11:03 am

I have created a "CCSVI packet of information". I am going to distribute these to 10 doctors (cardiologist, PCP, MS neurologists (2), psychiatrist, 3 brain researchers at Washington University, sleep doctor, and a friend with MS). I've already hand delivered the packet to my PCP.

Next Wednesday I have an appointment to meet with Dr. Thomas A. Woolsey at Washington University (Google him !!!!). I will get a chance to meet with many researchers who do research on neurological disorders and hand out 3 more packets, one packet will go to Dr. Anne Cross head of the Trotter MS center and Washington University.

The week after that I have my 6 months check-up with my neurologist and I'll give him a packet. I also see my psychiatrist, he is and M.D., Phd, and also give him a packet (it can't hurt !!!).

I'm doing my best to get the word out in St. Louis.
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Postby daniel » Thu Oct 29, 2009 11:19 am

Hey ozarkcanoer, what does your info packet contain? Can you please upload a copy so that others can bring the same packet to their local doctors?
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Postby ozarkcanoer » Thu Oct 29, 2009 12:05 pm

I printed copies of the following web links, duplicated them at Kinko's, and stuffed them into manila envelops. You will notice the information on Dr. Seven Brenner. He was one of the two eletter responders to Dr. Zamboni's paper, and he happens to be an MS neurologist here in St. Louis Missouri at the St Louis University Medical school. All my contacts are in St. Louis so profiling his response to Zamboni gives my packet a "home-town touch". Please read Dr. Brenner's eletter !!! You will notice I didn't include anything by Dr. Haacke. That is because I discovered he used to be here in St. Louis at Washington University and left in some cloudy circumstances. My contact says he has the greatest respect for Dr. Haackes scientific abilities (Dr. Haacke is a physicist), but there were some reasons that I don't know about that he left St. Louis for Detroit.

----------------------------------------------------


Dr. Zamboni, Italy - Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis http://jnnp.bmj.com/cgi/content/full/80/4/392

About Dr. Steven Brenner, SLU http://neuroandpsych.slu.edu/index.php? ... nner-m-d-2

Steven Brenner, SLU - MS appears to be related to venous flow abnormality of the brain with secondary brain autoimmunity http://jnnp.bmj.com/cgi/eletters/80/4/392#4667

News Release - Neurologists Investigate Possible New Underlying Cause of MS http://www.buffalo.edu/news/10562

Dr. Dake - Medical Director, Cath/Angio Laboratories, Stanford University Medical Center, Stanford, CA http://med.stanford.edu/mcr/2008/dake-0618.html Dr. Dake is doing imaging and catheterization surgery on patients he observes with the CCSVI condition.

This is MS web Forum on CCSVI http://www.thisisms.com/ftopict-8368.html
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