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 Transcranial Doppler. Treatment: Angioplasty or stents for venous stenosis, to restore blood flow out of brain.

My Veins Were Blocked. I had corrective stent procedure Oct 2009 at Stanford.
Details in my blog (9 month update 08/16/2010) and images. More about SammyJo - I just want to help all who have MS.

Media Coverage

• CBC News MS therapy trial urged by Manitoba minister 8/16/210
• ABC/KGO Bay Area women participate in MS treatment  8/10/210 Continuing coverage of Stanford's CCSVI treatments.
• New York Yimes  From M.S. Patients, Outcry for Unproved Treatment 06/28/2010.
• Wall Street Journal MS Program Halted Amid Controversy 03/25/10.

• ABC News San Francisco breaks CCSVI story in the US  2/10/10 Interview with SammyJo on her procedure at Stanford.

• BBC News 02/11/10 - 'I had controversial MS treatment twice' Heart surgeon with MS, treated by Dr. Zamboni.
• CTEVD Study Results University at Buffalo 2/10/2010 (confirmation of Zamboni's trial). Latest news on CTEVD.
  • Dr. Doug Brown comments on Univ. at Buffalo study UK Sky News Interview.
• BBC News 02/10/10 - Brain blood vessels clue to MS reporting on CTEVD study, University at Buffalo.
• CanadianTV, W5 11/21/09 "The Liberation Treatment"
  CTV's medical reporter Avis Favaro investigates a radical new theory of what causes Multiple Sclerosis and a novel way to treat the symptoms that may provide relief for millions of suffers - a medical discovery made through love.
  The Globe And Mail 11/20/09 - Researcher's labor of love leads to MS breakthrough
  The Globe And Mail 11/23/09 - Canadian MS society to fund research into 'liberation procedure' 12/01/09 Interviews
   
• University at Buffalo - Press Release | CTEVD Study Enrollment | Buffalo News | TV News | WBFO Public Radio
• Science Daily 10/27/09 - Neurologists Investigate Possible New Underlying Cause Of Multiple Sclerosis
• BBC News 11/27/09 - Multiple sclerosis 'blood blockage theory' tested
• The Myths of MS Blogtalkradio, host Elaine DeLack, RN discusses CCSVI with me.

       Note: there is much more news than what I can post. Try google news CCSVI for the latest.

Research / Clinical Evidence / What is CCSVI?

• CCSVI Workshop 02/07/10. Presentations by Drs. Zamboni, Dake, Haake, Simka, Zivadinov, Al-Omari.
• CTEVD Study Results University at Buffalo 2/10/2010
• Venous Multiple Sclerosis | CCSVI - Frequently updated research links; what to show to your doctor. Multiple languages.
• Fondazione HILARESCERE official research website of Prof. Zamboni on CCSVI.
  • 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.
  • Discussion of Zamboni's findings by Marie Rhodes
• ThisIsMS CCSVI forum - Read "CCSVI RESEARCH" sticky post, annotated by Marie, with links to papers.
• MRI CCSVI Pilot Study with MRA and SWI - Dr. Haacke, Wayne State Univ.
• Presentation on CCSVI research, Wayne State Univ. Good to show your doctor.
• Illustrative video on CCSVI from Dr. Paolo Zamboni with English narration 10/22/2009.
• Wikipedia - entry on CCSVI.

Patient Evidence, Experiences & Support

• ThisIsMS CCSVI patient forum - Read "Just the Facts" sticky post first, for plain language explanation.
• Patient CCSVI Tracking Project at ThisIsMS.
  • Rate your own MS score, MSIS-29 online Multiple Sclerosis Impact Scale (part of the Tracking Project). 
• CCSVI Facebook - breaking news on research & patient advocacy efforts.
• Get the latest: Google search on CCSVI, or YouTube
• Patient Blogs:
  • My Hopeful Journey Into Actual MS Recovery - A patient's personal account of CCSVI treatment.
  • CCSVI (the Vascular Theory of MS): Separating Fact from Fiction by The Wheelchair Kamikaze
  • ** Stu's Views & M.S. News **: Blog Links concerning CCSVI

What The MS Societies & Doctors Are Saying

• MSAA Chief Medical Officer, Jack Burks, MD - CCSVI & Multiple Sclerosis
• The Consortium of Multiple Sclerosis Centers, comment on the Liberation Treatment

What Can Patients Do?

• CCSVI diagnostic and intervention trials are planned. Contact these research centers to get on their list.
  • USA: Stony Brook, Georgetown, Duke, Stanford, Univ. South Carolina, The Vascular Group, CTEVD Stud at Buffalo 
  • Canada: Univ. Bristish Columbai, Hamilton/McMaster.
     
• What you can do to prepare for diagnostics or corrective procedure:
  • 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, TOS.
  • 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, and a rehab plan to regain functionality.
     
• 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!
     
• Action you can take to speed the research
  • Contact your MS society and encourage them to fund CCSVI research.
  • CCSVI in Multiple Sclerosis: What can I do??? by Joan Beal
  • 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.
     

Where Can You 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.
Or, if you think you might want to be in a diagnostic or intervention trial, you should sign up now because they fill up fast.

• CCSVI trials are planned. Contact these research centers to get on their list.
  • USA: Stony Brook, Georgetown, Duke, Stanford, Univ. South Carolina, The Vascular Group, CTEVD Stud at Buffalo 
  • Canada: Univ. Bristish Columbai, Hamilton/McMaster.
     
• Multiple Countries & USA, MI: Dr. Haacke, MRI CCSVI Pilot Study and publically available protocols.
• Dr. Simka & Zamboni's doppler protocol, requires specialized technician training.

Where Can You Get Diagnostic Scans, & Corrective Procedures

Corrective procedures (angioplasty/stents) as of 2/18/2010 are being performed at a few locations.

• Finding a Doctor for CCSVI a directory where you can find or submit participating doctors.

• Poland: Dr. Simka, website. Email contact preferred, mariansimka@poczta.onet.pl
• Jordan:  Dr.Hassan A.AL-Balas
• UK: Dr. Paul Crowe, online registration form, CCSVI explanation, uses Zamboni diagnostics.
• Canada: As of Dec 2009, University of British Columbia is seeking to fund a CCSVI trial.

More Online Resources & Patient Advocacy Efforts

CCSVI in Multiple Sclerosis CCSVI at UBC MS Clinic - Information and Support Buffalo CCSVI Study CCSVI & Multiple Sclerosis - a cure? CCSVI in MS Toronto ms-ccsvi-uk CCSVI & Multiple Sclerosis - a cure? Sclerosi Multipla trovata la "CURA" dal dott. Paolo Zamboni Esclerosis Múltiple Venosa (CCSVI) CCSVI nella Sclerosi Multipla Sclérose en Plaques Veineuse (CCSVI) Veneuze Multiple Sclerose (CCSVI) Venöse Multiple Sklerose, CVI & SVI, CCSVI MS EMES Multipl Skleroz Türkiye CCSVI AUSTRALIA Flowers4MS CCSVI - MS 33 B.R.A.T.S. (NJ, NY, CT & PA) CCSVI Worldwide Victory on Facebook & CCSVI Victory Club You can translate foreign language sites at Google.

Vascular Problems Similar to CCSVI Doctors in these areas may be able to help CCSVI patients. American TOS Association Thoracic Outlet Syndrome Subclavian Artery Thrombosis