spread the word!

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

spread the word!

Postby onesickrace » Tue Jan 26, 2010 1:52 pm

nothing major yet.... but just proves to those out there that if you make the calls and get the emails, people will respond! its at the very least a step in the right direction i am leaving the doctors name off so he and his office dont get over flowed with calls/emails.. but i did get his name from this list thanks to "bucks"

http://members.sirweb.org/

sorry, im just excited to hear back form someone, as ive left voice mails with nearly 20 different offices around the indianapolis area and not heard back from anyone else.


Dear Lee,
Thank you very much for your information. Until alerted by you, I was completely unaware of this work. After reading the articles I think that it would be premature to begin testing everyone with MS for venous outflow problems. While very encouraging, these preliminary studies do not meet the standard that would lead to the widespread adoption of this therapy. It is also not clear how best to treat the venous narrowings for optimal long term results. We will need to wait for the randomized studies before we will know the answers to these important questions.

I am sure you are wondering how you might be able to benefit from this procedure. At this time, your best bet would be to find a site that is performing a clinical trial and go there for evaluation and treatment. You may end up randomized to the non-Rx group which is a chance you would have to take with any “experimental” therapy. While we perform venous angioplasties virtually every day, this is not an indication that we can justify at this time. Insurance would not cover it and the hospital would not let me perform the procedure without pre-authorization regardless of how good and idea you and I think it is.

Again, I thank you for educating me on this important development. I will be talking to our Neurologists to see if there is interest in perhaps becoming part of one of the multicenter trials. Lead time for this kind of project is a year or more, so I doubt we will be doing it anytime soon.
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Postby shye » Tue Jan 26, 2010 4:24 pm

Great work onesickrace !
Thanks for posting this.
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