November 6, 2010 Newsletter
CCSVI is a new procedure….
We had a good turnout for this meeting and it was good to see some new faces in the group!
Sally began by paying a tribute to three of our group members who have passed on in the last few months. We sadly say goodbye to Becky Stevens who lost her fight with brain cancer, Pat Boddie was taken by ovarian cancer, and Tammy Lind to unknown causes. They were all taken from us too soon and our hearts go out to their families.
Beth and Patricia gave a presentation about CCSVI (Chronic CerebroSpinal Venous Insufficiency). Both have followed, researched, and had this new non drug procedure that has offered benefits to many people with Multiple Sclerosis.
CCSVI is a chronic condition, if left untreated, which causes blood from the brain and spine to be slowed or stopped in it’s attempt to flow back to the heart. The condition is caused by stenosis, a narrowing of the veins primarily used to allow blood to flow from the brain and spine. That usually occurs in the jugular and azygos veins. Treatment is performed by qualified interventional radiologists who do a simple out-patient procedure of balloon angioplasty to open the narrowed veins.
In the late 1990’s Dr. Paolo Zandoni, a vascular surgeon in Italy, decided to pursue a hypothesis supported by MS observers 170 years ago. Dr. Zamboni’s wife had MS so he developed sophisticated imaging equipment, put together a study of 500 normal volunteers & 65 MS volunteers. He began imaging the primary veins responsible for blood flow out of the brain & spinal cord. By enhancing diagnostic accuracy with high resolution Doppler-based ultrasound displays, he was able to view the actual blood flow and discovered that, in some cases, blood was actually flowing backwards, or refluxing into the central nervous system of some people. He found that virtually all of the MS patients had venous abnormalities ( a finding not seen in healthy controls) and many who’s abnormalities appeared to be congenital.
This was big news and naturally caused a big stir in the MS community. MS patients have pushed for treatment and have traveled out of country as well as here in the US. Initially, doctors who began treating patients were being stopped & shut down by lawyers. This was puzzling because of the seemingly effective results found by many. Next came the “authorities” and societies demanding that there are studies for this procedure given the complexity of MS. Not easily deterred, MS patients have still banded together and consequently many vascular centers have formed studies making this treatment accessible. Everyone agrees that yes, studies are essential just don’t prevent us from having it done.
That’s where we are now. Studies are in progress, specialized centers with the proper diagnostic equipment are available, doctors worldwide are involved and hopefully soon we will have local access for this procedure. Currently, you will most likely not find a neurologist backing this as it is a venous issue out of their realm of expertise. Vascular doctors are unable to test for this without the specialized doppler imaging equipment and everyone is still trying to wrap their brains around it. This coming together will certainly lead to improved understanding of MS as well as incorporation of this groundbreaking treatment.
Beth & Patricia related their experience with the procedure. Beth was treated at The Hubbard Foundation in San Diego, Patricia at Pacific Interventionalists in Costa Mesa and Linda Moore who was also at the meeting was treated at The Arizona Heart Institute in Phoenix. The duration of disease activity appears to be a factor in symptom relief with newly diagnosed presenting dramatic changes and in the three cases here, small but significant changes have occurred with continued ongoing improvement happening with time.
We urge you to do your own research and provide these few websites:
http://ccsvialliance.org
http://www.ms-mri.com/index.php
http://www.worldwidevictory.com/default.aspx
http://www.ccsvikuwait.com/Details.aspx?d=4
http://thisisms.com/forums.html
http://wheelchairkamikaze.com/
On Facebook – you can join CCSVI in Multiple Sclerosis
Our website http://www.hope4ms.org
Next month is December and time for our annual Christmas Breakfast! We will post more information about that soon.
Until Then,
Be Well!