Sunday, March 14, 2010

CCSVI- Diagnosis and Treatment Log Entry #1

English: There's a light at the end of the tun...
(Photo credit: Wikipedia)
As I indicated in my previous post, this is my CCSVI week- diagnosis and hopefully treatment. I plan to update this blog frequently with details of my adventure. This post is installment #1.

My lovely wife and I made the trek from Maine to our hotel room- a 5 hour drive without traffic, bathroom breaks, wrong turns, etc. So, it was about 7 hours total. I have this hotel room reserved for 8 nights, but I’ll be looking for another room tomorrow. I’ve learned over time that the term “wheelchair accessible” is a very subjective one indeed. I’ve traveled a lot in my wheelchair, and this is the smallest “wheelchair accessible” room I’ve ever seen. I can’t even turn my chair around in it. I have to drive in, and back out. I won’t trouble you with a description of how complicated it is for me to use the bathroom.

But we’ll survive one night anyway. The internet access is good, and free, and the place appears clean.

I’ve had about 7 months to think about CCSVI, and today I had about 7 hours to really think about this. Here’s where my mind is now…

There’s a battle going on inside me, other than the battle between MS and my central nervous system, and other than the battle between the anxiety of traveling and the tranquility of my little plastic glass of shiraz. The battle I’m referring to here is between optimism for the events of the coming days, and realism about the prospects.

One part of me has optimistic expectations that this experience could affect my MS in a positive way. I don’t spend much time talking or writing about this part of me. I’m almost ashamed of it. But I must admit that this aspect of my being does exist, because if I didn’t have some level of optimism, I would not have spent hundreds of hours researching this, and I wouldn’t be sitting where I am tonight. This is the emotional, hopeful part of me.

The intellectual part of me is working hard to keep the emotional part of me grounded. My brain keeps telling my heart to guard its expectations. After all, this is an experimental treatment of a condition that is related to MS only theoretically (so far). If I let my hope and my emotions run the show, I could be in for a big disappointment.

So my state of mind is the product of these two warring factions in my head. So far they are fighting to a draw, which is probably a perfect situation from a mental health point of view. A little optimism is good for the soul. A little realism is needed to hedge against the possible negative outcomes.

What are some of the potential outcomes this week?
  1. We could find no problems with my veins. Ironically, healthy veins would be a huge disappointment for me. I’d be back to the drawing board in terms of finding a strategy to fight my MS.
  2. We could find problems with my veins, but be unable to fix them. This is disappointing, but less so than outcome #1. If I know I have problems, I can continue to research options for repairing them in the future.
  3. We could find problems with my veins, and successfully address them surgically. This is the ideal outcome of this week’s work. But even then, there are three possible sub-outcomes (I just made that word up):
    1. The repairs could be permanent, and positively affect my MS (best sub-outcome).
    2. The repairs could be temporary, and re-repair would be required later (next best sub-outcome).
    3. The repairs could be permanent, but have no positive effect on my MS (worst sub-outcome).
What keeps my spirits up is that I’ve been wondering and wondering for so many months, and now I’m that much closer to having answers. Answers are good.

Schedule for tomorrow: MRV and then dinner with friends.
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16 comments:

  1. We've read it and we know it's going to be the best outcome. I'll talk to Kim later.Thanks for calling.

    Love Clair and Carole

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  2. U GO Mitvh, Way to lay it all out there,
    Bake

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  3. Mitch, I'm in your korner...another Mainer wishing you the best of all possible outcomes on your testing and for the steps to come from there..fingers crossed.

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  4. Wishing you the best. I hope this endeavor is successful. I will be looking for more updates on how things are going.

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  5. Wheelchair KamikazeMarch 14, 2010 at 10:51 PM

    Mitch, you know I'm wishing you the best. Looking forward to meeting you guys tomorrow night...

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  6. I vote for outcome 3, sub-outcome 1 ;)

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  7. I'm rooting for Potential Outcome 3, sub-outcome 1!

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  8. Good luck, Mitch... can hardly wait for the next update!

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  9. Good luck to you!--may they find the blockages then be treated for your ultimate long awaited liberation!!!

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  10. Even in the face of realism and a history of disappointing outcomes, I'm glad hope persists. Good luck Mitch! Here's one more person rooting for you.

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  11. Good luck, Mitch. I agree that we must balance the optimism with reality, but for your sake, I'm really, really hoping you get the best sub-outcome. (I like your made-up word.) Keep us informed.
    Peace,
    Muff

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  12. Best of luck Mitch. Mark and I hope Dr. X finds outcome 3 and performs sub-outcome 1. Missed your call this weekend. Fishing Derby at our eutopia.

    Carrie and Mark

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  13. Send you good energy, it will go for the best.

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  14. Mitch, I'm rooting for you. Sorry I couldn't comment earlier but my internet was down. Good Luck my friend.
    Charlie

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  15. OF ALL THE PEOPLE I HAVE ENCOUNTERED IN MY YEARS WITH MS...YOU TRULY GIVE HOPE TO THE REST OF US...UNLIKE THE ONES WHO CLAIM TO HAVE "OUR" BEST INTERESTS AT HEART WHILE TRYING TO PROMOTE THEMSELVESBE IT FOR A PROFIT OR JUST BECAUSE THEY ARE SEEKING ATTENTION.
    I HOPE YOU NEVER ENCOUNTER ANY OF THEM FOR THEY WOULD HAVE TRIED TO DISSUADE YOU BECAUSE THEY HAD NOT THOUGHT OF IT FIRST.
    I WISH YOU TRIPS OF MANY MILES WITH YOUR FAMILY AND MY VERY BEST. IT IS PEOPLE SUCH AS YOURSELF WHO BRAVE THE WAY FOR THE REST OF US. IT IS SOMEONE SUCH AS YOURSELF WHO SHOULD HOST A MULTIPLE SCLEROSIS SITE FOR YOU ARE INTERESTED IN THE WELL-BEING OF OTHERS, NOT ONLY OF YOURSELF. I TRULY THANK YOU FOR SHARING YOUR STORY AND HOPE YOUR JOURNEY GOES WELL.

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