When CCSVI Alliance was formed, the founding board members made a decision to focus our organization and the website on the disease of multiple sclerosis as it related to the evolving research and study surrounding CCSVI.   Our website became a recognized resource for patients and medical professionals wanting to learn about CCSVI and MS.  Now, two years later, we are following the research and will be broadening our areas of focus into other neurological disease (ONDs).  CCSVI Alliance views the discovery of CCSVI in other neurological disorders as emphasizing the importance of the venous system and cerebral perfusion to brain health.   Our new OND section to the website will be reviewed and vetted by a team of medical and scientific professionals.  We encourage patients and caretakers of those with other diseases of neuro degeneration to stay abreast of developments and support the ongoing exploration of CCSVI.

The past couple of weeks, the Internet has been percolating with talk about the importance of cerebrospinal fluid (CSF) in neuro degenerative disease.   Dr. Robert Zivadinov’s recently published research about low CSF flow observed in patients with MS follows one of his presentations at the ISNVD 2012 conference.  You might want to visit the ISNVD website to review other abstracts relating to CSF and brain perfusion.   Also, at the ISNVD Conference, we were fortunate to have Dr. Chuck Woodfield on our Patient’s Day speaker’s panel.  His presentation on Atlas Instability, CCSVI and CSF was extremely interesting and is now timely to the current Internet discussion.  Congratulations to Dr. David Hubbard -it is my understanding that results from his study on perfusion imaging will soon be published in the JVIR.

Recently, I was invited to observe the CSF study being conducted by Dr. Scott Rosa and Dr. Raymond Damadian.  An abstract from an earlier but similar study “The possible role of cranio-cervical trauma and abnormal CSF hydrodynamics in the genesis of multiple sclerosis” can be found here   The current IRB approved study is observing neuro degeneration pathology resulting from aberrant CSF flow which can be caused by numerous obstructions including spinal mis-alignment at the cranio-cervical junction, tissue masses within the cranial vault and CNS, and other impediments such as cerebella tonsils.   I was fascinated to see the backjets on the cine MRI images; to see CSF flow pounding into the spinal cord instead of smoothly running along the side; to see the back of the brain being pushed inward because of turbulent CSF.   The study is using an upright MRI which scans the patient in a weight bearing, normal gravity condition.  Pathologies, such as cerebellar tonsils, which may not be visible on the recumbent become evident on the upright  "A case-control study of cerebellar tonsillar ectobia (Chiari) and head/neck trauma(whiplash.)”  Currently, Dr. Rosa’s study is not accepting new participants.  Observations from the study look promising, but until the data is analyzed and a report is published in a peer reviewed journal we should not speculate as to outcomes.  

I would also like to thank Dr. Manish Mehta, Albany Vascular Group, who recently sat down with me to discuss his research and his IRB/FDA approved study for vein reconstruction. If you have questions and or concerns about further treatment for restonosed  and/or clogged venous stents, I encourage you to watch this video interview which will be posted on our website in a few weeks.  Dr. Mehta discusses patient selection, associated risks, the surgical procedure and outcomes.  Vein reconstruction is an invasive surgery and the Alliance encourages all patients and caregivers who are contemplating this type of procedure to learn as much as possible - be proactive and educate yourself.   Please be extremely cautious when selecting the treating physician.  The Alliance recommends that treatment be performed under an IRB/FDA approved study.   I would suggest reading the article “Discussing CCSVI With Your Doctors” on our website  here.  Even though the questionnaire is for CCSVI treatment (PTA),  many of the questions would apply to a doctor performing vein reconstruction.

CCSVI Alliance understands the need for this new information to be shared and vetted by the medical community.   We are appreciative to all those who have been open to new observations.   Multiple sclerosis, Parkinson’s Alzheimer’s are all multi-factorial diseases.  We need doctors from many specialties talking across their medical silos to answer the questions which are arising everyday.   The Alliance will be updating its website with new articles relating to the current research from many disciplines.  As always, the new medical content will be reviewed by a team of scientific and medical professionals.

Thanks to all of you who have lent their support to the Alliance – to our current Board of Directors, to our volunteer Patient Advisory Board, to the medical professionals who have offered their time and their expertise to support our organization,  and to the broader patient community who have graciously given us moral and funding support.

Sincerely,

Sharon Richardson

President CCSVI Alliance