Chronic Cererbrospinal Venous Insufficiency (CCSVI) is a vascular condition that Dr. Paolo Zamboni, an Italian vascular surgeon, believes may be significantly related to MS. He contends that when normal blood flow is altered, especially reversed, the body may react with an inflammatory response like MS. Dr. Zamboni developed experimental treatments that involve clearing different kinds of obstructions in veins that drain the central nervous system. Similar interventions are now being researched at Stanford University and SUNY Buffalo. CCSVI has received much press this past year because Dr. Zamboni's 2009 published findings pose a radical and controversial intervention for MS. News of it spread on the internet rapidly and many with MS became interested in organizing support to learn more about it. The MS professional community was initially skeptical because careful, comprehensive, evidence based research was not yet available.
Those interested in not shutting the door on CCSVI research and treatment and who were committed to learning more about it or had undergone CCSVI treatment, organized a grass roots movement called the CCSVI Alliance. On February 15, 2010, the CCSVI Alliance became a non profit organization, 501(c) (3), dedicated to building a bridge between those with MS and the MS professional community in order to promote education and active dialogue about CCSVI research and treatment.
The mission of the CCSVI Alliance is to debunk myths, provide up to date research findings, promote informed advocacy and sustain communication between those with MS, their caregivers and MS professionals. Their first goal was to create a user friendly website with state of the art technology that could facilitate clear, easy access to information. On July 26, 2010, ccsvi.org was launched!
The Philadelphia MS Examiner had the pleasure of meeting the first president of the CCSVI Allliance, Sharon Richardson. Sharon has MS and has undergone CCSVI treatment in Stanford, CA with Dr. Dake one year ago. She explains that the website's logo: "opening veins.....opening minds...." is a way to remind the MS community that this website offers critical aspects of CCSVI theory from research to treatment that is reviewed by a world class team of MS and medical professionals. Information is presented in an organized friendly format so that anyone interested in learning more about CCSVIcan.
The ccsvi.org website is impressive with its special features and unique approach. Some of its highlights include:
- "The Basics" tab with down to earth, fundamental info about the theory and treatment of CCSVI, including a glossary of terms
- an "Advanced Topics" tab with more advanced information that includes published articles, a FAQ and an identification of treatment risks listing
- an insights and discussion page by MS pts and their caregivers (Pt Perspective Tab) that provides frank dialogue and first hand accounts of CCSVI treatment
- a "How to Donate" tab that indicates how to help support CCSVI research and learn exactly where your financial support will go
- a Video presentation, one each month, that interviews key professionals working in the field of CCSVI research and treatments
The site is pleasing to the eye. There are large font sizes and suitable color artwork and icons for those with visual impairments. The screens are not crowded with information either. If users have questions or feedback, they can access the facebook page of the CCSVI Alliance and post them there.
SO CHECK IT OUT! The MS Community now has a central web address to get information we need about advancements in CCSVI theory, research and treatment.
For more info:
For a great, readable overview of CCSVI theory and current treatment by a MS neurologist, check out Dr. Jack Burks' press release at the Multiple Sclerosis Association's website: msassociation.org
Comments
FOR STARTERS, ZAMBONI'S NOT A NEUROLOGIST.
ZAMBONI is NOT a neuro, he is a vascular surgeon..Get fact straight please. He is in a specialty that is the TOP of the Doctor pecking order. Neuro's take MRI's and a monkey can see the damage to the cells in the brain. Write a QUICK script for Interfeon (24000.00) a year and jobs done, BEWARE of the drug companies that will loose 6 billion a year. Organizors should be carefull and aware of rhe power of the lobby. The tobacco people got real crafty near the end.
Just relax now. The important part is that CCSVI is being talked about and people are finding docs to perform the angio. As more people get the procedure done w/SUCCESS the more difficult it will be for the neuro's to downplay this. Help is on the way!!
Thank God he is not a Neurologist, they are becoming a dirty word.
I was diagnosed with Multiple Sclerosis back in 1983. I can hardly walk now and it seems my condition worsens every day. When I first heard about the Liberation procedure and its results from a friend, I thought United States would be the first to conduct the trials. I could never imagine the corruption involved. I ended up applying for this simple procedure in Poland and waiting.. The other options were to get it done in India. After researching the internet extensively, I came across http://www.ccsviclinic.ca/ . They are screening for CCSVI in Fargo, ND and have very affordable packages for the Liberation procedure in India. I called (404)461-9560 and spoke to their nurse administrator Lisa whose priceless support made me realize that we are not alone in the fight against MS. They are screening within the US and Canada, their medical travel package includes flight arrangements and help with the visas, world class accommodation and meals within their hospitals, the liberation procedure, a stent if needed, medications necessary, a site-seeing tour, Pre-and post-procedure supervision, Full medical file including copies of charts, screens, CDs of Venograms, blood work, EKGs, etc. Post Procedure Screenings, follow-up and consultation with surgeons for the next 6 months and so many other provisions Lisa told me about, I can’t recall however you might be able to find out more on their site.. http://ccsviclinic.ca/?page_id=564 . They are providing all of this at just $13000 as compared to the other companies that charge something like $20000 just for the procedure. You may also contact Lisa by emailing her at apply@ccsviclinic.ca or calling her on (404)461-9560. I am getting liberated mid- November and I am so very thankful to everyone at CCSVI Clinic for making this happen!
It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced surgeons in Poland & Albany. As more people receive the therapy there is growing concern amongst patients that http://www.ccsviclinic.ca/?p=765 the procedure needs to include a post-procedure protocol that is more effective than simply releasing the patient from the hospital within a day.
It should be mentioned that our research is under much scrutiny & attack from elements that are trying to control the industry & the dialogue.We would ask you to have the independence of thought to see through their campaign of deceit. http://www.ccsviclinic.ca/?p=783Regular research updates will be published on the Clinic website. Questions about participation may be directed toward the Clinic administration at 888-419-6855.
It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced surgeons in Poland & Albany. As more people receive the therapy there is growing concern amongst patients that http://www.ccsviclinic.ca/?p=765 the procedure needs to include a post-procedure protocol that is more effective than simply releasing the patient from the hospital within a day.
Got something to say?
Examiner.com is looking for writers, photographers, and videographers to join the fastest growing group of local insiders. If you are interested in growing your online rep apply to be an Examiner today!