CCSVI Evolving---thoughts from Marie
CCSVI Evolving    This is Marie Rhodes writing this note.   CCSVI sprang into the awareness of MS patients in December 2008.  We reviewed Dr Zamboni’s third doppler study showing that MS patients had reflux and anxiously anticipated the release of his study in which he had treated 65 patients.  It all sounded so amazing!  So easy—find the blockage, fix it and voila! The end of MS!   Over time the reality has turned out to be anything but easy, though the approach remains very promising.  These are things that are turning out to be issues of interest.   First, these blockages are not always easy to locate.  In some cases there are flaps of tissue or webs that are nearly invisible on any diagnostic.  It takes diligence and experience to see these subtle anomalies.  Even on venogram it is possible to miss these issues.   Dr Zamboni along with one of his partners, Dr Menegatti, has discovered that one way it is possible to see these issues with a kind of doppler called duplex in which a colorized view of the blood flow is coupled with a grey scale readout. The problem is that it takes training; reading the description of how the readouts are interpreted in CCSVI is not enough to be able to do it successfully.     Dr Menegatti actually did a study to see if people could do this kind of evaluation without training and discovered that the untrained people were not successful in performing the tests, even if they thought they understood what they were looking for. (Menegatti et al, 2010 “The reproducibility of colour Doppler in chronic cerebrospinal venous insufficiency associated with multiple sclerosis”)   Dr Haacke has developed a very detailed MRV MRI protocol for assessing the venous drainage of the head.  He is working on refining it so that it can reliably detect CCSVI issues even if the person has no special training.  This work is ongoing and part of a current national IRB trial (See The Hubbard Foundation website).   So finding the issue that may be to blame for poor blood flow is not easy even for experienced people with a lot of previous non-CCSVI experience in their field.  They are having to retrain and refine former understanding to take into account this new information.   Next even when someone gets a repair it appears that many people are finding that they are needing a second repair later.  Was the first repair incomplete?  Or is the area restenosing?   Both are possibilities.     Even Dr Zamboni is seeing some repeat procedures.  In my book Dr Campalani shares his story: his first repair was in 2006, but he has had 2 further repairs since then.  In each case the same area was restenosing.  I also know of someone who had 2 procedures by one doctor then went to a new doctor when treatment became available in her hometown: the new doctor found many new areas that he felt needed treatment, and these were areas not thought to be a problem in the earlier procedures.  She feels much different after the most recent treatment.   In Dr Zamboni’s study of patients treated with angioplasty, many patients restenosed, and some areas restenosed more often: for example the jugulars restenosed often but the azygous almost never did. (Zamboni et al. 2009 “A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency.”)   SO what does this all mean?  The standards of practice are still being developed, which means that everyone is just doing their best based on their prior experience with similar issues.  Jugular stenosis is regularly treated for people who have central venous lines…but while the problem is similar in that it is a blocked jugular, the cause of the blockage is totally different and a lot of learning is needed to get from identification of the problem—a blockage in the drainage of the brain—and the eventual reliable solution for CCSVI blockages.     Someday everyone who wants to be a doc that helps people with CCSVI will have learned the best practices from the experiences of docs before them, experiences gained on the first patients who asked to be treated.   Will every doc demand that he have a Menegatti trained doppler technician to monitor the success of his procedure?  Will they use new techniques not in common usage today? Will some people need an open procedure (surgery not angioplasty)?  Will there come a day when the doc can tell who needs which procedure?  We’ll all have to stay tuned to find out.   The cool thing is that we ARE on the way!   (from Joan---For those who want more information on Marie Rhodes new book---which I believe will become the go-to book for medical professionals and lay people---please visit this site: http://ccsvibook.com/   )