My 3 month milestone!

It felt great to climb up on my soapbox last week.  I got to highlight a woman who is doing so much for the CCSVI cause.  I also got a load off of my chest about my frustration with the MS Society.  I'm afraid that in all of my enthusiasm I forgot some important points.  The view from on high must have clouded my vision!

First, I must thank my friend Denise for pointing out that ballooning veins is called venoplasty, not angioplasty.  Although many in the CCSVI community use the words interchangeably, they are two very different procedures.

Second, I unwittingly rallied many people to want to support CCSVI studies, but neglected to give suggestions for where to channel their precious dollars.  At the present time I am not aware of any active studies that are soliciting donations.  Dr. Haskal has a fund that was set up at the University of Maryland at the request of a grateful patient.  WHEN he gets going, the money will be ready to support his efforts.  Many people have directed donations to this wonderful doctor, and I think that the money will be well used.  You can find his page here.

In my humble opinion the best place to direct funds right now to support CCSVI education and research is the CCSVI Alliance at www.ccsvi.org.  They just had their first fundraiser, a Walk n' Roll in Tampa, Florida this weekend and raised over $26,000!  Like the MSketeers they also have contacts with some clinical trial funding sources.  The doctors trust the Alliance, and are working hand in hand with them. They have just announced that they will sponsor an informational symposium in Chicago to coincide with the big Society of Interventional Radiology meeting at the end of March.  The discussion will be moderated by Dr. Michael Dake, the first IR to treat CCSVI in the US.  I am proud to disclose that I am a member of the Alliance's Patient Advisory Board.

Disclosures are all the rage these days.  It is very hard to find any doctor who has not been compensated by a drug company in some fashion.  Although this by no means suggests that they are all beholden to Big Pharma, it is important to know who may have conflicts of interest when it comes to opining about, or studying CCSVI and its treatment.

I guess that I have, at least temporarily, broadened the focus of this blog because talking about me is getting a little boring.  How awesome is that?

I passed my three month anniversary last week, and my body is giving no indication that it is getting weaker in any way.  In fact my wonderful PT dismissed me from therapy last week!  I would have liked to continue working with her forever, but my insurance only covers 15 sessions per year.  As of the beginning of March I've used 10 of those precious sessions.  We are holding on to the rest of them just in case I need her at any time over the next 10 months.

We did a re-eval in anticipation of my dismissal.  I have shown improvement on all areas tested except some of my left hip muscles.  Hey, I've got to have something to keep working on!  Now it is my  job to continue building my strength and stamina at home.  I am making appointments with myself on the calendar, just as I did when I was seeing my therapist.  This is no time to get complacent!

For anyone interested in my post-procedure drug regimin, I was put on a full strength aspirin for three months following venoplasty.  Dr. Haskal just told me to drop to a baby aspirin for another 2 months.  Whatever you say, Doc!

My calendar just reminded me that I have an appointment with my bike and therapy bands, and I don't want to be late!  Until next time...