BORING

For the first time in many months I have absolutely nothing to say about myself, except that I had a very average week.  No thrills, no spills, just getting it done.  Lovely.

While my life is only interesting for its boring normalcy, genuinely exciting things are going on in Chicago, Illinois these days!  The Society of Interventional Radiology (SIR) is holding their conference there, and I expect fascinating news to come out this week.  First and foremost doctors have released a study "Interventional Radiologists Advance MS Research: Vein-Opening Treatment Safe" which should calm the fears of the good neurologists who are counseling their patients to avoid this treatment for safety concerns.

Tonight is an extraordinary Roundtable meeting of the best and brightest doctors in the US who are studying and treating CCSVI.  This event is being made possible by the CCSVI Alliance, and anyone who is in Chicago and interested in attending is welcome!  What a gift it is that these professional are sitting down for a moderated conversation about CCSVI, and that they are allowing the public to observe and ask questions.

This CCSVI thing just keeps getting interestinger and interestinger!  Don't worry.  I'm allowed to make up words because Miriam Webster is a personal friend of mine. ;o)  

Overstimulated? Not me!

My basketball-playing daughter had her first tournament this weekend.  It took place in a facility which has approximately 15 courts all being used at once.  A quick calculation makes that 10 kids and two coaches on each court, plus two referees with whistles, and at least one parent cheering for each kid.  That adds up to a minimum of 360 people in one gigantic open space.  Did I mention the 15 constantly bouncing balls, too?

My husband took her to the first game in the morning.  After he scoped the joint out, he called to warn me about the noise level, and the hugeness of the facility.  The dear man also remembered to note that the bathroom facilities were about a football field's length from the court on which our daughter was playing.

I drove the 45 minutes to the ginormous gym with my other daughter to meet them for the two afternoon games. I would not have even considered taking this trip alone pre-Liberation.  It would have been way too much driving, round trip, not to mention the stimulating events while I was there.  Granted I was not the one actually playing, but there was a time when just being surrounded by all of the noise and activity would have made me feel like I had run a marathon!  Exhausted!

Not on this day, though.  I sat, cheered, and even easily trekked to the bathroom once during our 3 1/2 hour, two game afternoon.  I felt great, and her team won one of the games I got to watch.  Go Flames!  We finally left at 6:30.  I had to stop for gas, drive 45 minutes back to our neck of the woods, and even had dinner at a restaurant before we made it home sometime after 8:00.

I was amazed at what I was able to accomplish.  I drove to Baltimore and back a few weeks ago with no problems.   Considering I haven't bothered attempting to drive any real distance in years, yesterday's trip is still noteworthy.

This was the first opportunity that I've had to be in a wildly stimulating setting and see that my body did not shut down in its midst.  Wow!  What a wonderful experience to be able to support my girl without sacrificing my own health.  On top of that we left the house at 8:30 this morning (hubby drove us all) to go back for one last game, which they won handily.  My energy level was great, and my walking was good, too.  Pre-Lib Nicole would have needed at least a day to recover from yesterday's activities.  Not the still-improving Nicole, though.  What a gift!

I now have one more unexpected benefit from treating my stenosed veins to add to my list.  My totally unscientific belief is that my sympathetic nervous system is better able to handle sensory stimulation.  What a wonderful surprise!  I did not even realize how debilitating over-stimulation used to be on my body.  Looking back I realize how often just going to a party with music and conversation would wipe me out.

I went to one of those parties a couple of weeks ago, and didn't even appreciate that I wasn't fazed by my surroundings.  I was too busy being proud of myself for walking up and down steep steps, and playing a lousy game of ping-pong which requires balance and some semblance of coordination!

It is officially Spring.  Warm weather will be here soon, and hot sticky temperatures won't be too far behind.  My strength and coordination are much better these days when I first get out of a hot shower.  I am anxious and curious to see if my heat tolerance will be better this summer. With all of the healing my body has been able to accomplish in the past 3+ months, I have some real hope that I may not actually have to hibernate all summer in my air conditioned house.

I accept that some things will not get better without some far off stem cell treatment.  I am grateful for what I am able to do today, and will appreciate any more improvements that may develop in the future.  If I just maintain my current status, and stop the progression of disability, this treatment is still a grand slam home run in my book.

Up, then down, then up again!

I had a couple of rough days last week.  My legs felt heavy and ached sometimes, and I felt a little more off balanced than usual.  I forgot to take my purse to the grocery, and only realized it when I was in line to check out.  I also forgot to take my daughter to a friend's house for regularly scheduled date.

What was happening to me?????

Well, of course my first thought was that the dreaded downward slide had begun, and right after I so proudly announced that I had passed my three month anniversary!  How unfair!

Then I took a deep breath.  I had been a little stressed because my talented daughter just made a great basketball team which is going to require a big commitment of our family.  Good stress, but stress nonetheless.  Then while getting ready for bed on the worst of the two days, I noticed the band aid on my arm.  I forgot that I had seen my primary doctor and gotten a tetanus shot which also included pertussis and a couple of other boosters for good measure.  I now believe that that shot had a lot to do with my problems.

By Saturday I was feeling like a million bucks again.  I woke, showered, rested for a little while, went shopping at a department store, then came home and got dolled up for a friend's birthday celebration.  I went to the party and walked down some kinda steep basement steps, played a lame (but no lamer than anyone else) game of ping pong, then came back upstairs later.  My balance was sharp, legs didn't hurt at all, and I didn't forget one thing all day!

Today is Tuesday and I'm still on a roll.  Whew!  I am both relieved and thrilled, in that order.  Most people develop physical manifestations of stress, and I am certainly no exception.  Some people can't sleep; evidently I forget things and get leg pains.  Good things to remember for the next time that stress gets the better of me, oh and, when I get a shot at the same time!

There is lots of exciting things going on in the CCSVI world these days.  As I write this many of the leading docs in this field are in Bologna, Italy at the first meeting of The International Society of Neurovascular Disease.  This Society was formed when many of these doctors convened for the CCSVI symposium in Brooklyn, NY in July, 2010.  They have just agreed on a standard protocol for all doppler Ultrasound testing for CCSVI.  This step was desperately needed to ensure that all studies that are done to test Dr. Zamboni's theory are using the exact same techniques.  That will hopefully eliminate, or at least greatly reduce, the number of dubious studies that claim to refute Zamboni's results.  If his numbers do not hold up in studies using these standardized protocols, so be it.  We need objective information about this procedure and its testing protocols.  All of the wonderful anecdotal stories in the world won't convince the Canadian government to pay for this treatment.  We need the hard science.  These protocols just levels the playing field so that everyone is using the same standards, regardless of any bias they may have. Too many people have a lot of money and turf at stake if CCSVI is proven to be a big factor in the cause of MS, or at least in its symptom management.  Venoplasty is no $3000 monthly infusion, pill, or daily injection that needs to be taken for life.  That could cramp a lot of doctor's supplemental income and individual's stock portfolios!

The other big news is the Doctor's Roundtable Discussion:  CCSVI & MS scheduled for March 29th during the Society of Interventional Radiology conference in Chicago.  The names of participating doctors are listed, and it is very impressive.  It is being presented by the CCSVI Alliance, and everyone is invited!  I can't make the trip, but I am happy that it will be professionally recorded and hopefully be available on the Alliance's website.  History is being made this month, and we are all here to bear witness!

So much has changed since I had my first Liberation Treatment one year ago this month.  Wow.  The growth of this field has been nothing short of meteoric, yet we are still in its infancy.  I am so excited to see what this next year will bring!  My wish is for safe, consistently effective, local treatments for all who long for, and are entitled to, this procedure to correct a real vascular condition.  If it improves some, many, or all symptoms of MS, all the better!

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...