Purpose of this website is to
explore the hypothesis, and spread awareness on:
CCSVI -
Chronic Cerebro-Spinal
Venous
Insufficiency
Recently proposed as the cause of Multiple Sclerosis.
Diagnosis: Cranial & Neck imaging (CT-Venography, Magnetic Resonance Venography (MVR) or
Doppler).
Treatment: Angioplasty or stents for jugular stenosis, to restore blood flow
out of brain.
My Stenosis: I had corrective stent procedure Oct 2009 at
Stanford.
Details in my blog (updated 01/25/2010)
and images. More about me.
Alert 12/9/09 - CCSVI Procedures on hold:
Procedures on hold in USA, intervention trials beginning.
USA: Stony Brook, Georgetown, Duke, Stanford, Univ.
South Carolina,
The Vascular Group, Albany, NY
Canada: Univ. Bristish Columbai, Hamilton/McMaster.
Watch for results early 2010 from
CTEVD
Study Jacobs Neurological Institute, University at Buffalo.
Latest news.
What you can do to prepare:
Make a transition plan with your doctor if using MS immune
suppression therapy, in case CCSVI theory is correct.
Find a local vascular doctor or interventional
radiologist. Doctor
list that treats a similar condition,
CTOS.
You have a right to proper diagnosis, even if
treatments are on hold for now. See
resources and scan protocols below.
Make a post-procedure recovery care plan, based on
current level of disability, then a rehab plan to regain functionality.
Direct
donations can be made to CCSVI studies gearing up around the world.
msliberation.ca has
raised $40,000 the first week for Dr. Haacke's study
at McMaster University in Canada.
What you can do to feel better & slow MS progression while the CCSVI research
gets started:
Try calming your immune system's reaction to CCSVI damage with
Low Dose Naltrexone therapy.
Pick your favorite MS diet and stick with it. Quit
eating sugar and fructose (Sugar:
The Bitter Truth H. Lustig, MD, UCSF).
I've tried all of the above and found them to be
effective. I've been at this long enough to give advice, so there you
have some!
Media Coverage
The Myths of MS Blogtalkradio, host Elaine
DeLack, RN discusses CCSVI, & what may be causing the narrowing
of the jugular in MS.
Dr. Zambon's most recent publication A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency.
J Vasc Surg. 2009 Dec;50(6):1348-1358.e3.
Full Text | PubMed
Abstratct.
The Consortium of Multiple Sclerosis Centers, comment on the
Liberation Treatment
Where You Can Get the Diagnostic Scans
First contact your MS doctor, and ask when they will begin CCSVI
scans.
Have the radiologist coordinate with a doctor
familiar with CCSVI, so the right scans are done.
Let the patient coordinator contact your insurance provider for pre-authorization.
Multiple Countries & USA, MI: Dr. Haacke, MRI CCSVI
Pilot Study
and publically available
protocols.
Dr. Simka & Zamboni's doppler
protocol, and the required technician training.
USA, NY:
CTEVD
Study Enrollment Jacobs Neurological Institute, University
at Buffalo, ctevd@bnac.net
