CCSVI – Different Approaches, Different Techniques

Yesterday, a symposium about the vascular theory of MS (aka CCSVI) was held in Brooklyn.  This is a pretty exciting development because it marks one of the first times the medical community–specifically interventional radiologists(IRs)–have come together to discuss CCSVI and its treatment.

In a nutshell, here’s what was concluded:  we are at the very early stages of our understanding of CCSVI–what it means, how to diagnose it and how to treat it.

Diagnostic radiologists, who read the MRI or Ultrasound images have remarked that diagnosing CCSVI is not a straightforward affair.  There are incredible subtleties that need to be understood and mastered for a diagnostician to conclude CCSVI is present. 

The IRs who have been treating CCSVI agree about the following:  treating CCSVI is not like anything they have been doing up to now.  It requires new skills, techniques and expertise.   The learning curve is steep. 

Where they disagree (but again, they are all “learning as they go”) is whether to balloon or stent, if they balloon, what size to use, and regardless of whether they balloon or stent, exactly where to do the repair.  Those are a lot of variables, and for patients being treated today, how will their IR’s choices affect their outcome? 

So where does this leave the MS community?  Every individual needs to make the choices that are right for them including whether to get imaged and treated.  Since the medical community who are currently working on CCSVI are still creating more questions than answers for themselves, we know that the right answers are going to take time and rigourous research.  An individual touched by MS might want to consider the pros and cons about acting now, or waiting a little while for more answers.

Here are a couple of terrific links:

The CCSVI Alliance is dedicated to educating patients with research-based information, providing tools for patients to advocate for themselves, and supporting medical professionals’ exploration of Chronic Cerebrospinal Venous Insufficiency (CCSVI).  http://ccsvi.org/

And here are a list of questions to ask if you are considering getting tested or treated for CCSVI:  http://mssociety.ca/bc/education_consumer_questions.htm

These are exciting times, and each day as we learn more, we are closer to figuring out where CCSVI fits into the picture and how best to deal with it.

MRI and Ultrasound for CCSVI

April 7, 2010 – The MS world may be witnessing an historic breakthrough in the understanding and treatment of the disease with the connection that is now being made with venous problems and is being called Chronic Cerebrospinal Venous Insufficiency (CCSVI).  Every week, new information is coming out about:

• what constitutes CCSVI
• how CCSVI relates to MS
• how to diagnose CCSVI
• what to do about CCSVI.

 

The one thing that has become very clear is that it takes specialized equipment and specialized training for technologists and radiologists to accurately diagnose and evaluate CCSVI.  As of now, MRI and Ultrasound scanning techniques have not been standardized, so what is found on one scan, may not be found on another.  One of the first orders of business is to standardize diagnostic imaging techniques.

At Canada Diagnostic, we are following the developments very closely.  At this time, we are choosing not to provide any diagnostic tests for CCSVI.

The main reason that we are not providing this service is that we don’t feel we would be serving the patient population by charging them money to provide them with information that may or may not turn out to be accurate, given the state of flux that CCSVI imaging is in.

Additionally, we do not want to charge a fee for a test, results of which cannot be acted upon.  There is currently no place in Canada that is providing either balloon or stent venoplasty for MS.

While it is true that some people with MS are getting scans in Canada and then going overseas for treatment based on their scan results, the vast majority are staying home for the time being.  Whether one chooses to go overseas now, or wait for treatment to be available at home, you will be given another test (possibly another MRI or ultrasound and then Venography—the gold standard).  We can’t, in good conscience, charge you for a test that you will have to have done all over again.

In the meantime, we have chosen to support the comprehensive and exciting research that UBC is doing in this area.  We are confident that the research that they and others  throughout  the Canadian Network of MS Clinics are doing will yield really exciting news very soon.