As I change the focus of this page, I wanted to keep the prior information about CCSVI. Some of it is out of date, yet there is great info here. Note that this has not been updated since January 2011!
What is CCSVI?
• Chronic cerebrospinal venous insufficiency (CCSVI) is a chronic (ongoing) problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis (a narrowing) in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood cells and fluids into the delicate tissue of the brain and spine. Blood that stays in the brain too long creates “slowed perfusion”...a delay in deoxyginated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain. Plasma and iron from blood deposited in the brain tissue are also very damaging. (Note – the above description was copied from the ‘Just the facts’ thread by Cheerleader on ThisIsMS.com CCSVI forum)
• How is CCSVI related to MS? Most MS patients tested so far are found to have CCSVI. The numbers vary. Zamboni’s original study of 65 patients showed 100% had CCSVI. In other places where they are testing and treating, the numbers are above 90%. At the BNAC, where they are doing a blinded study, they released preliminary numbers showing around 60% of patients have CCSVI. There are other locations around the world working on approval and funding for both testing and treatment studies.
• How can I know if I have CCSVI? There are two current non-invasive tests for CCSVI – Doppler ultrasound and MRV. Doppler ultrasound can show reflux and valve issues in the jugular veins. Transcranial Doppler can check the deep cerebral veins for reflux. MR Venography uses an MRI machine and contrast to show how the blood is moving through the veins in the head and neck. The so called “gold standard” for CCSVI is an invasive test, catheter venography, which looks inside the veins to look for stenosis or other issues. Catheter venography is also the procedure which allows for treatment of CCSVI (see below). The Doppler and MRV tests are screening tests used to see if the more invasive test and treatment are required.
• How is CCSVI treated? The current procedure to treat CCSVI is an endovascular procedure. A catheter is inserted into the femoral vein in the groin, and the veins are checked for narrowings and abnormalities. When an area of stenosis is found, the balloon is expanded to help improve bloodflow. The balloon is deflated and removed. If the balloon treatment does not improve bloodflow, some doctors are using stents to keep the vein open. A stent is a small metal tube that is inserted into the vein and expanded. The stent remains in the vein and allows for improved bloodflow.
CCSVI - Learning more
If you're just learning about CCSVI, here is my list of sites to visit and things to read for more information:
• CCSVI Alliance
• Dr. Haacke's description of CCSVI.
• CCSVI in Multiple Sclerosis Facebook page. This page is kept up by Joan Beal, whose husband was the first one treated by Dr. Dake at Stanford.
o More specifically, check out the compact view of the notes - a few of my favorites include:
- Things you can do today to help your health
- How to talk to your doctor about CCSVI
• ThisIsMS.com CCSVI forum
o Be sure to read the 'Just the Facts' sticky as well as the 'Tracking' sticky where patients treated for CCSVI talk about their results.
• CTV W5 videos - two excellent programs on Dr. Zamboni and CCSVI
o The Liberation Treatment
o The Liberation War
• The official NMSS position on CCSVI.
• The official MSAA position on CCSVI.
• My Favorite blog: Wheelchair Kamikaze - he talks about MS in general, as well as CCSVI.
• A great international website in several languages: Venous Multiple Sclerosis - CCSVI. This link is to the English version.
CCSVI - In depth
If you've read a bit about CCSVI and want to delve a bit deeper into the details, here are a few more links:
• Read Dr. Zamboni’s paper - A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency. This was published in the Journal of Vascular Surgery in December, 2009.
• Review Dr. E. Mark Haacke's history of MS and vascular research.
• Here's a great link on the Community Care (Albany - Dr. Siskin, et al) site titled Background Information on CCSVI. There's a nice comparison to venous insufficiency in the legs.
• Check out the presentations from the Feb 2010 Hamilton CCSVI Workshop. All of the big names were there - Zamboni, Haacke, Dake, Simka, Zivadinov, Al-Omari...
• See the very detailed list of published papers on the Venous Multiple Sclerosis - CCSVI site.
• Read the wisdom and humor of Dr. Salvatore Sclafani, an Interventional Radiologist from Brooklyn, NY where he answers patient's questions on ThisIsMS.com
• See Dr. Michael Dake of Stanford University present during the Innovations in IR segment at the SIR Scientific Meeting in FL in March, 2010 – Dr. Dake’s presentation starts quite a ways in – move the ‘play’ ball to about 42:00 to see his presentation.
• Angela of Flowers 4 MS did a wonderful translation of a Sardinia workshop on CCSVI. You'll hear from Prof. Zamboni, Dr. Salvi and Dr. Galeotti. You'll find it in three parts - look for the dates: May 9, May 15 and May 25, 2010. While you're there, read a few of her other translated interviews and articles.
• You get a gold star from me if you read the entire original CCSVI post on ThisIsMS.com. You’ll laugh, you’ll cry, you’ll spend days reading all 64 pages, and you’ll get to know the original players and how this all came about.
CCSVI - Names to know
If you're just learning about CCSVI, here is a list of names that you might see mentioned, and my description of how they are involved.
• Prof. Paolo Zamboni – University of Ferrara, Ferrara, Italy – he discovered CCSVI in MS patients
• Dr. Fabrizio Salvi – neurologist working with Dr. Zamboni on studies of CCSVI
• Dr. Roberto Galeotti – interventional radiologist working with Dr. Zamboni on studies and treatment of CCSVI
• Dr. Robert Zivadinov – Buffalo Neuroimaging Analysis Center, Buffalo, NY – studying CCSVI. The CTEVD study is a blinded study and is attempting to replicated Prof. Zamboni’s work by looking for the prevalence of CCSVI in MS patients as compared to healthy controls.
• Dr. Bianca Weinstock-Guttman – Jacobs Neurological Institue, Buffalo, NY. Dr. Guttman is a neurologist at JNI, and is working on the CTEVD study with Dr. Zivadinov.
• Dr. E. Mark Haacke – McMaster University, Hamilton, Ontario & Wayne State University, Detroit. Dr. Haacke is an expert in MR imaging, and has taken an interest in CCSVI. Dr. Haacke invented Susceptibility Weighed Imaging (SWI) scans which are being used to look at iron in the brain on MRI.
• Dr. Michael Dake – Stanford University, Stanford, CA. Dr. Dake is the first Interventional Radiologist to treat patients for CCSVI outside of Zamboni’s study in Italy. He treated between 40 and 60 patients at Stanford. He is not currently treating patients and is in the approval process for a study.
• Dr. Marian Simka – Euromedic Clinic, Katowice, Poland. Dr. Simka is treating patients for CCSVI at his clinic in Poland. At last count, he had treated over 300 patients.
• Dr. Tomasz Ludyga, Euromedic Clinic, Katowice, Poland. Dr. Ludyga works with Dr. Simka treating CCSVI.
• Dr. Salvatore Sclafani – Kings County Hospital, Brooklyn, NY. Dr. Sclafani treated patients for CCSVI. He is not currently treating and is awaiting IRB approval for a study.
• Dr. Franz Schelling – an Austrian doctor who first proposed a venous connection to MS in the 1980’s, but his theory was ignored in favor of the autoimmune theory.
Supporting CCSVI Research
If you would like to support CCSVI research, here are a few options:
• Buffalo Neuroimaging Analysis Center (BNAC) - they are conducting a blinded testing only study (CTEVD study) to prove the correlation of MS and CCSVI as well as the PREMISE treatment study.
o Host a BNAC MStery party. If an individual party raises more than $1,000 there is a matching grant of $1,000 from the Direct-MS Foundation (Ashton Embry's organization).
o Support (either in person or by being a 'virtual' partygoer) one of the existing MStery parties:
- Ongoing: House of Bees rasies money for BNAC - place an order at House of Bees, and use coupon code BNAC. You'll get 10% off your order of $10 or more, and we'll donate 10% to BNAC.
- Ongoing: Orna Berkowitz is selling bracelets at Raise Your Hand to Fight MS.
- Ongoing: The purchase of cards and t-shirts at Flowers 4 MS.
- Completed: An amazing event held June 27, 2010 in Seattle at The Pink Door. Read my blog post here.
• Support Dr. Haacke and the MRI Institute for Biomedical Research - be sure to click on the CCSVI/MS paypal button towards the lower part of the screen. This group is working on setting up diagnostic and treatment centers around the world.
• If you're in Canada, donate to the McMaster University/St. Joseph Hospital study: the MSLiberation site has a page with details.
• Stanford University has set up a fund for CCSVI research - the MS Innovations Fund. Details can be found on the CCSVI in Multiple Sclerosis Facebook page.
• CCSVI Alliance at CCSVI.org.