Just found this topic - I applaud your activism, rssugg!! And I'm especially interested in the few responses you've gotten, since I also live in NC. Can you post the names or PM me? Thank you! (Also, may I post on the NC CCSVI Facebook page news of your outreach?)
I had some success in reaching out to a local research/teaching hospital’s chief of vascular surgery with the email below (slightly amended). I found her name and email on the hospital’s website, and addressed it personally. I received an immediate response, and learned that a vascular surgeon in the department, Eric Mowatt-Larssen (to whom Magoo referred on page 1) is working on an IRB proposal for a CCSVI study, but approval is probably many, many months away. (BTW, he's signed up to attend Dr. Sclafani's July 26th CCSVI symposium!) For those who can afford to wait, and who qualify for the study, that’s a bit of good news. Meanwhile….
Once the CCSVI Alliance website is up and running later this month, I'll send emails or letters to many IRs/vascular surgeons with a link to that site. I'll tailor those letters not to studies or research, but to diagnosis and treatment of CCSVI, and the business as well as humanitarian aspects. (For those who respond, I'll underscore the necessity for proper education on the latest CCSVI techniques and protocols.)
I'm also planning to attend some local NMSS functions, prepared to speak up about CCSVI and hand out info to those with open minds and interest.
EMAIL Subject: CCSVI Screening (Chronic Cerebrospinal Venous Insufficiency)
Hello Dr. Shortell,
Ten years ago I was diagnosed at Duke with secondary progressive multiple sclerosis, and I’ve been keeping up with research developments since then. In my opinion, by far the most promising and exciting news in the past decade is the discovery by a team of Italian doctors of impaired blood drainage from the brain in many MS patients (due to so-called Chronic Cerebrospinal Venous Insufficiency, or CCSVI, involving one or both interior jugular veins and/or the azygos vein), and the frequent dramatic reduction in various MS symptoms which resulted when the blockages were eliminated through balloon angioplasty with or without stents. (For first-person accounts, see http://www.thisisms.com/ftopict-8346.html
While the formal research is still in early stages, based on the preliminary results I believe it is unnecessary and indeed foolish for me to wait any longer to have this testing done. While the risk of stents in a vein at this point may outweigh the potential benefit for me, if I were to have blockage(s) I would certainly be amenable to the balloon angioplasty (while recognizing that re-stenosing has occurred in about half the treated jugular veins, and about 5% of the treated azygous veins). Progression of the disease continues….
My question is whether or not your department is presently equipped to do CCSVI screenings using the protocol developed by Dr. Paolo Zamboni, and whether you have done any such screenings. Do you plan to do any, or conduct a study regarding CCSVI and MS? If so, I have a great interest in participating.
I eagerly await any information you can provide about Duke’s present or planned involvement with CCSVI screening and treatment.