Today With 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
- 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.
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.
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 discovers a novel way to treat the symptoms that may provide relief for millions of suffers - a medical discovery made through love. Free to view after broadcast time.
The Globe And Mail 11/20/2009 - Researcher's labor of love leads to MS breakthrough
The Globe And Mail 11/23/2009 - 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 11/27/2009 - Multiple sclerosis 'blood blockage theory' tested, University at Buffalo

Research / Clinical Evidence / What is CCSVI?

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

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

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