Rested and refreshed.

It has been two months since I began my sabbatical from blogging.  I have had a wonderful summer, and feel ready to dive back into the world of CCSVI with renewed enthusiasm.

I just passed my four month anniversary of my latest treatment, and I'm still feeling good.  I have now officially surpassed my longest run between restenoses.  My benefits lasted about one month after my first treatment in March 2010.  I felt fantastic for two months after my second venoplasty, and had a great 4 months after my third treatment.  Are you still with me?  I have now been treated exactly FOUR times for CCSVI.

I am not thrilled to have needed so many treatments.  If I could have waited longer to have my first procedure, I would have.  So much has been learned in the year and a half since I was originally treated, and over two years since Joan Beal brought Dr. Zamboni's research to the US's Stanford University.  Doctors are now  meeting, collaborating, sharing information, and planning  and conducting studies.

What I have learned about myself in this time is pretty interesting.  I am living evidence that this procedure can be repeated at least four times.  However, I have come to the conclusion that I had my most dramatic improvements after my second treatment.  My first procedure at Georgetown was understandably very conservative.  While I had many positive results after the treatment, my veins restenosed very quickly.  I was their first guinea pig.  I knew what I was getting into.

I found Dr. Haskal for my second treatment and while he is also a conservative doctor, he was much more aggressive than the doctor who treated me first.  The results were truly miraculous- for two whole months.  Hmmm...

I have bounced back to greatly improved cognitive, fatigue, swallowing, balance, strength, and walking after each venoplasty.  But as I have told Dr. Haskal, I don't seem to bounce back as high with each subsequent treatment.  It is one of the mysteries that will hopefully be solved as these fine IRs begin studying CCSVI in IRB approved trials.  Or maybe it is just me!  We MSers may all have the same basic diagnosis, but I have never met one person whose symptoms match mine exactly.  It would be so much easier if we all "looked" alike!

In my experience I think that the first, or if necessary, second treatment provide the very best shot at nailing these stenoses, screwy valves, webs, and septums for the greatest symptomatic benefits.  I believe that the doctors are getting better at this, but there is still a long way to go, and so much still  to learn.

So how am I doing, over two months since I last posted?  In a nutshell I can say that I am really well, and not as great as I had hoped I'd be.  How's that for confusing?

As I said earlier everything has improved again.  My biggest frustrations are my weaker-than-I'd-like legs, and less than stellar balance.  I am still waaaay better off than I was before ever hearing about CCSVI.  I can take my daughters shopping to a couple of stores in the mall, but not the whole thing.  I can stock up at COSTCO without a riding cart!  I can visit the Kennedy Center on two feet.  But I really depend on the cane outside of the house more than I did after my first treatment with Dr. Haskal.  I had genuinely believed that I might be able to eventually get rid of it way back then.  Now I am not too confident that that will ever happen.  I made peace with my walking companion over the past year, though.  It is a friend now, not a foe.

I have been working with the personal trainer twice a week since June, and am seeing steady improvement in my core, hip, and leg strength.  It is empowering to see how much more I can do now compared to three months ago.  But I wish it was more!  As long as I continue to see steady progress in my body, I will keep working with this gifted trainer.  She understands MS and CCSVI, and is not afraid to push me, which I really like.  Right now I am working on walking on inclines and declines.  I hyperextend my knees when I walk due to weakness in my quads and other important walking muscles which I can't name.  It is very hard to walk up or down a ramp with stiff legs!  I am using a treadmill that can incline at the gym and at home to practice walking with soft knees that can accommodate the ups and downs.  Think about me the next time you encounter a ramp, and try it my way. Frustrating, huh?

My report about my still-improving walking is not a complaint.  I am eternally grateful to still be on my feet.  I believe that without CCSVI treatment, I might not be.  My Segway and scooter are still my "long" haul transport devices.  Long for me may be a couple of blocks, depending on the day.

I am seeing my neuro, Dr. Tornatore tomorrow for a six month check in.  The last time I was in his office in the beginning of April I was on top of the world.  I was feeling great and got to show off for him and his first year med student (see here).  One month later I was back on Dr. Haskal's table being retreated.  What a surprising and frustrating difference a few weeks can make!

Dr. T. is a good man.  I am able to be totally honest with him about all of this, and not risk judgement, or poisoning his opinion of CCSVI and its treatment.  He has remained open minded and curious about all that I share with him about this exciting new discovery.  While he may not be jumping back into the waters anytime soon, as far as I know, I am confident that he is reading and keeping tabs on all of the developments.  And if he should ever get behind, he has me to catch him up at our twice yearly meetings!  I'll let you know if he has anything interesting to share.

On a completely different topic, my high school freshman daughter has asked if she can be a guest blogger here one day.  Of course!  I was supremely flattered that she asked, and happy to accommodate her.  So the next post you read may be written by a fresh voice.  I look forward to reading what she has to say, and hope you do, too!