Gemeld op MS web door TvG:
Go local....
Yesterday at 8:55am
There has been a huge growth in talk about CCSVI since we first started discussing the ramifications of venous insufficiency in MS on the ThisIsMs.com boards over a year ago. I was fascinated by Dr. Zamboni's discovery, and thought it made a lot of sense, given with the vascular issues I'd noticed in my husband, Jeff.
At that time. I sent the Zamboni research to my local universities in California, to see if other vascular doctors would be interested in studying the connection. (note- I DID NOT send the papers to neurologists, since CCSVI is a vascular disorder. I sent the papers to vascular doctors.) I was fortunate that two places responded to my inquiries. We ended up going to Stanford, and that is how Dr. Dake got involved in treating self-referred MS patients. We were amazed to see the change in my husband after his venous angioplasty. He continues to do really well- relapse and progression free almost a year later. He has regained energy and health. We are so thankful. I felt indebted to Dr. Zamboni and Dr. Dake- and decided to let other people know about CCSVI. And began to write more and started this FB page.
I thought the media would jump on this story, and I got ahold of Reuters and AP medical reporters, as well as writers for the NY TImes and LA Times. They told me that the story was too early, not enough research, call back later. I contacted Oprah, Montel, Good Morning America many other American news sources directly. I spoke with news producers. Nothing. Dr. Embry put me in touch with CTV, and I was able to help them get in touch with all of the doctors...we are very fortunate that Avis Favaro and her producer, Elizabeth St. Philips, understood the importance of this discovery.
In the past year, quietly and committedly, patients have been working together and taking this research to their own doctors, interventional radiologists and vascular surgeons....and it has worked. We have many more local doctors looking at CCSVI, and finding it in MS patients. These doctors attend conferences (like the recent vascular conf. in Florida) and they compare notes. Many of them know about CCSVI- and are interested in researching further.
This is the way- I believe the ONLY way....we do not need to scream into the large void of the internet. We do not need to preach to the choir. We do not need to yell at neurologists. (remember- this is a vascular disorder.) We need quiet, logical, research-based voices going to local doctors and universities. I know, it's not as dramatic as being on Oprah....but honestly, wouldn't we rather just see ourselves and loved ones tested and treated for CCSVI? It's not about fame or recognition. Look at Dr. Zamboni...he's the most modest man I've ever met. Getting worked up about some pharma conspiracy is just not going to help. Writing a well-thought out letter to a local university vascular department is a better idea. As Dr. Zamboni tells us...we need research based confirmation of CCSVI. And that will only come from diligent work.
If each of us just put together packets of the research and respectfully approached vascular doctors and university vascular departments- within a year's time, we would have testing and treating facilities set up across the globe. I promise. This is how Dr. Simka came to research CCSVI- Dr. Mehta, Dr. Haacke, Dr. Dake, Dr. Franceschi, all of the doctors.
Please post your local groups and websites after this post....let folks in your area know where you are and who you are working with. Let's stay on point and organized.
Again: here are all of Dr. Zamboni's published papers:
http://www.fondazionehilarescere.org/en ... zioni.htmlI'm going to turn off the wall for posting for a day or two....just so everyone has a chance to read this. Please post your local groups in the comments section.
We can do this - TOGETHER!!!!
go local,
Joan
OK- here's a template for a letter or e-mail to send to vascular departments or interventional radiologists-
** Ik schrijf u in de hoop dat u en de vasculaire afdeling van uw universiteit geintereseerd is in het ontwikkelen van testen voor CCSVI bij MS. Ik heb het onderzoek van Dr. Paolo Zamboni (Universiteit van Ferrara, Italie) gevolgd. Dr Zamboni's studie is de eerste die MRI en doppler combineert om de bloedcirculatie in de jugularissen en de azygos van MS patienten te onderzoeken. In de studie bleek dat van de 65 patienten waarbij MS is gediagnosticeerd alle 65 CCSVI hadden door vernauwingen in hun aders. gene enkele van de 230 controle personen in dit onderzoek had dit. Dr. Zamboni gelooft dat de reflux, veroorzaakt door de vernauwingen, de oorzaak is van de afbraak van de bloed-hersen barriere en de demylisatie in het centrale zenuw stelsel bij MS patienten. Hij vergeleek(?) het proces van het ontstaan van de MS leasies met de veneuze zweren(?) in de benen van van mensen met chronische vaat insufficientie.
Dr. Zamboni heeft 100 mensen behandeld met endovasculaire chirurgie. de door hem behandelde patienten merkten verbetering in de MS symptomen, zoals hitte intolerantie, vermoeidheid, evenwicht, pijn en loop spasmen(?)
"I'm writing to you in the hopes that you and the vascular department at your university might be interested in pursuing testing for venous insufficiency in Multiple Sclerosis. I have been following the research of Dr. Paolo Zamboni (University of Ferrara, Italy.) Dr. Zamboni's study is the first to use doppler ultrasound and venography to investigate circulation in the jugular and azygos veins in MS patients. All of the 65 clinically defined MS patients studied had chronic venous reflux due to stenoses in their veins. None of the 230 controls had these stenoses. Dr. Zamboni believes it is the reflux created by these stenoses which leads to the break of the blood brain barrier and the demyelination seen in the central nervous systems of MS patients. He likens the process of lesion creation to the development of venous ulcers on the legs of patients with chronic venous insufficiency. Dr. Zamboni has treated 100 MS patients using endovascular surgery. His treated patients have seen improvement in their symptoms of heat intolerance, fatigue, balance, pain and gait disturbances.
Hier is Dr. Zamboni's paper, gepubliceerd in December 2008-
http://jnnp.bmj.com/cgi/rapidpdf/jnnp.2008.157164v1 Hier is informatie uit Buffalo Neuroimaging Analysis Center, over hun lopende studie naar CCSVI bij MS
http://www.bnac.net/Hier is Dr. Mark Haacke's site over het juiste gebruik van de MRI om CCSVI te kunne vinden
http://www.ms-mri.com/En hier zijn de power point presentations van Dr. Haacke's recente conferentie over CCSVI
http://www.ms-mri.com/news.php********************************
....Now, make it personal...add your own description of your life, your MS journey, the treatments you've tried and why you would like to pursue the testing ......Keep it short and to the point, but be honest about everything you've tried and why you see this as a new hope...
I truly hope you might be interested in investigating this ground breaking research. I know that your university has a respected vascular clinic, and I would consider myself very fortunate to meet with you and be tested, in the hopes of discovering if venous insufficiency is part of my MS.
Thank you for your time and consideration
Kies een ziekenhuis in je regio bij de hart en vaatgroep:
http://www.hartenvaatgroep.nl/client/2/ ... oofdid=400en zet hier even naar welk ziekenhuis je hebt geschreven, eventueel met een brief zodat de rest hier weer een voorbeeld heeft.
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