Off we go!

Spring break is finally here.  April showers are totally cramping my soccer-playing daughter's style, and the weather hasn't felt very spring-like to me, but it really is here.  The cherry blossom trees know it, and so do my pollen-averse sinuses!

Changing weather has always been a difficult transition for my sensitive systems, as it is for many people with MS/CCSVI.  While I am hoping that this change of season will be easier than those in my past, I'll have to see how it goes.

We are driving to Boston for the week, and taking the Segway with us!  I got a handy-dandy Segvator lift to carry it on the back of the car.  This will allow me to explore Beantown with my children who will be visiting the city for the first time.

I have not set foot in the city of Boston since I graduated from college many, many years ago.  It is the city where I got my undergraduate degree, met my love, and, in all honesty, froze my a$$ off for too many months during my four year stay!

In addition to touring the city, we will take the girls to the campus of Boston University, and show them the block where their dad and I lived when we started dating.  We even named our first dog Buswell in honor of the street where it all began!

On an unrelated note, the American Academy of Neurology is meeting in Hawaii this week.  There is all kinds of $hit flying about CCSVI, and not surprisingly, most of it is not good.  Today's revelations include the statement that CCSVI is no more common in MS population than in people with other neurological disease or no disease at all (here).  There are also doctors who are saying that MS causes CCSVI (here).  Another report states that there "may be no benefit" from treating CCSVI (here).  What is insane is that all of these stories/commentaries are referencing the same single study out of University of Buffalo (here)!

Luckily there are sane doctors out there in Hawaii like Dr. Joseph Hewitt (here), and Dr. Robert Fox of the Cleveland Clinic (here) who are speaking up.  Dr. Hewitt has performed hundreds of venoplasties for CCSVI.  Dr. Fox is urging patients to wait to get treated, but he explains how the Buffalo study suffers from poor subject selection, and ill-defined testing protocols from Zamboni.  It's a fair assertion, and one that Dr. Zamboni is working to clarify.

With all of the controversy it should be clear to the neurologists that what is desperately needed are MORE studies.  Dr. Zamboni's one study is not enough to convince them that CCSVI and its treatment are real and effective at managing MS-like symptoms.  So, too, should they be equally skeptical of one study out of Buffalo which casts doubt about the theory.

Burying heads in the sand, and alienating patients is absolutely the wrong approach to dealing with this new-ish theory.  My neuro is well versed in the long-documented connection of MS and vascular abnormalities.  I am sure that he is not the only well educated MS neurologist out there!

Ignorance leaves people feeling vulnerable; knowledge truly equals power.  How much more influential would these neurologists be with their patients if they had reams of studied to support their recommendations? Refusing to participate in studies makes it virtually impossible for IRs to do the work that will satisfy these neurologists' very high standards.  They can't have it both ways.  Help with discovering the answers, or shut up and get out of the way!  We just need a few brave neuros to support this research to start.  Eventually the rest will have to pay attention, or even join in the fun!  It will happen.  This patient population will make it so!

Happy spring break everyone!