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Monday, February 8, 2010

CCSVI As Cause of MS

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.
  • Action you can take to speed the research
  • 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

Research / Clinical Evidence / What is CCSVI?

Patient Evidence, Experiences & Support

What The MS Societies & Doctors Are Saying

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.

Diagnostic Scans, & Corrective Procedures (stent/angioplasty) have been performed at:

  • USA, CA: Stanford University, Dr. Michael Dake. Patient Coordinator: (650) 725-3806
    • As of 12/09/09 procedures no longer available, but you can register for clinical trial starting 2010.
  • Canada: As of Dec 2009, University of British Columbia is seeking to fund a CCSVI trial.
  • Italy: University Bologna Hospital, Dr. Zamboni
  • Ireland: Royal Victoria Hospital, Belfast, Drs Anton Collins, Robin Baker
  • Poland: Dr. Simka, website. Email contact preferred, mariansimka@poczta.onet.pl

CCSVI in Multiple Sclerosis
CCSVI at UBC MS Clinic - Information and Support
Buffalo CCSVI Study
CCSVI & Multiple Sclerosis - a cure?
CCSVI in MS Toronto
CCSVI & Multiple Sclerosis - a cure?
Esclerosis Múltiple Venosa (CCSVI)
CCSVI nella Sclerosi Multipla
Sclérose en Plaques Veineuse (CCSVI)
Veneuze Multiple Sclerose (CCSVI)
Venöse Multiple Sklerose, CVI & SVI, CCSVI

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