Oh snap!

Please accept my apologies for a couple of errors in my post from Wednesday.  First, no big deal, but I wrote that I spoke with Dr. Tornatore in November 2010 about being tested for CCSVI.  It was actually 2009!  I can't believe that this all began for me almost two full years ago.  Time flies when you have hope and feel better than you have in years!

The bigger fumble was in my understand, or misunderstanding of Dr. T's explanation of Dr. Fox's study. He did not do any autopsies, but Doppler ultrasound tests.   The wonderful Joan Beal explains Dr. Fox's abstract very well here.  Turns out I got it ALL wrong.  I was thinking about a different item that was written by doctors in Rome.  They DID do autopsies on two MS patients who died of other causes and found IJV problems.  Please read for yourself here.  Again, thanks to Joan for the link.

Now all about my Botox inquiry...

I saw a wonderful neurologist at Georgetown who was recommended by Dr. Tornatore.  Dr. B. specializes in botulinum toxin injection for distonia and spasticity, among other things.  He was very knowledgeable about MS spasticity.  He got bonus points from me for knowing about CCSVI, too!

After an exam he told me that I am very good candidate for botulinum treatment for my left hamstring.  I still can't get my head around the fact that I may be close to getting relief from the constant ache in my leg.  I am a die hard optimist, who after careful research, believes that the best will happen.  I cannot imagine what it will feel like to have anything but a rock-hard hamstring, but I am excited to find out!

Dr. B. is going to be very conservative with me because I have a "small frame", but mostly because I am ambulatory.  I will have a BIG problem if he over treats my muscle.  I am confident that that won't happen because Dr. Tornatore thinks he is excellent, and he is prepared to disappoint me by using too little for my first treatments.  Sounds like a good plan to me!   As I said, I am an optimist and don't spend too much time dwelling on the "what if"s.  I say optimist, you may say naive or stupid.  Semantics.

I am going to have two injections of Dysport in my hamstring, which is the same drug as Botox.  It comes in smaller doses, so it will be less expensive.  My first treatment will give me benefits for approximately 6 to 8 weeks.  The doses must be spaced 12 weeks apart.  Dr. B. told me that the effects are cumulative, so the second treatment should last for 10 to 12 weeks.  By the fourth round he is hopeful that I will be able to go 16 weeks between treatments, therefore only requiring three a year.

I'm a little nervous for the actual shots.  He will use EMG: electromyography to guide the injections to the exactly right spots.  Lying on my stomach while a doctor sticks multiple needles in my leg sounds very unappealing, but if the results are what I expect, it will be worth it.  I will be taking my wonderful husband with me for moral support, and his very big, strong hands to squeeze.  I channeled my pain through two labors by squeezing those hands and they didn't break then, so this will probably be no big deal. Gulp.

It will take about a month to get insurance approvals, and for the doctor to get the drug.  I am probably going to have this done in early to mid November.  I've lived with this tight muscle for almost 10 years, so another few weeks is certainly doable.

I saw my trainer after my appointment and she is almost as excited about this as I am!  She said that we will document my strength and abilities before the shots so we can objectively keep track of any improvements that I have.  A less spastic hamstring will allow my quadricept to work better, which will hopefully improve my gait.  Dr. B. pointed out that I need to really work on my right hip flexor so that my right leg will be as equal to the left as possible after treatment.  My trainer and I honed in on it today, and it will be a primary focus for the foreseeable future.

It is so fun and exciting to have real physical goals, and an actual shot of achieving them.  Before CCSVI treatment that was simply not possible.  I was absolutely unable to do enough exercise to make any improvements to my strength.  If botulinum interrupts the signal from the nerve to the muscle, then my legs must have been filled with the stuff before Liberation.  Signals just weren't getting through.  No amount of ambition or determination could will my legs to push pedals for more than an excruciating few minutes.  All of the optimism in the world couldn't convince my legs to cooperate if they cried, "Uncle."

Now I can push myself to do one more minute if I want to do it.  My muscles burn, but in the "hurts so good" kind of way.  I have a long way to go to beef up my stamina, though.  I would like to be able to do more than a 10 minute ride and a 10 minute walk in the same session.  Just two years ago that sentence would have been unimaginable.  I would have killed to be able to do that much!  I am grateful that I can, but now I want more.  Can you blame me?

I have not forgotten that the other shoe could drop at any moment, however sitting around waiting for it to happen is NOT an option.  I am living my life in the present, and appreciating every wonderful day that I have.  I even appreciate the "just o.k." days!  In fact, any day that I feel better than I did, and can do more than I could do, on March 2, 2010 (the day before my first Liberation), is a great day. Perspective is everything, isn't it?