Tuesday, March 16, 2010

CCSVI- Diagnosis and Treatment Log Entry #3

The most exciting phrase to hear in science, the one that heralds new discoveries, is not 'Eureka!' (I found it!) but 'That's funny ...'
  - Isaac Asimov

If yesterday showed King’s County Hospital Center at its worst- slow service, confusion, piles and piles of sometimes redundant paperwork- then today revealed the hospital at its best. In one day I had an Ultrasound, MRV, neurological exam, and consultation with Dr. Sclafani (photo below). Everything went off like clockwork.


This is such a learning experience for me, and for all of us. I learned something today which I began to suspect a week or so ago. Noninvasive procedures such as ultrasound and MRV have minimal value, especially when they are being conducted by people without a huge amount of experience in diagnosing CCSVI this way (which is almost everyone), and especially when you plan to undergo a venogram the following day anyway. My ultrasound today probably showed no CCSVI issues, or maybe it did. Who knows? Who cares? Today’s MRV of my jugular veins may have indicated some CCSVI, or maybe it didn’t. Who knows? Who cares? The azygos vein was not scanned at all today, and according to Dr. Zamboni this is the vein most often associated with stenosis in primary progressive MS.

Use of these noninvasive tests are a bit like trying to map the surface of the moon by viewing it through a telescope. The venogram is more like mapping the moon by walking on the surface- with a surveyor’s transit in your hand. Tomorrow, Dr. Sclafani will be walking on the moon for me.

Barbara, who is the other person being treated this week, is first up tomorrow morning. I’ve grown to know Barbara quite well this week. She’s an incredible woman who deserves some sort of relief from MS as much as anyone does. I’ll be rooting for her.

When Barbara is done, it will be my turn. I won’t be able to report out to relatives and close friends until late afternoon or early evening. I may or may not be able to blog about my experience tomorrow night.

Am I nervous? A little. I’m not anxious about the procedure itself. I’m worried that I could be the first MS patient of Dr. Sclafani’s who does not have CCSVI. Lying on that table tomorrow, wide awake, with a catheter wandering around in my venous system, I’ll be thrilled if I hear Dr. Sclafani utter something along the lines of “that’s funny…”


  1. You're being treated by an excellent doctor. You can at least count on that. Good luck!

  2. Glad today went smoothly and left you feeling good about the facility. Dr Sclafani sounds like a such a great guy and what a productive day.

    I'm looking forward to tomorrow for you.

    I can't wait for your report.

    I've never bet Barbara, but I wish her well too. This is all so incredibly hopeful.

  3. I am with you! All those tests are just to get you on the table and that is where you really learn "do I have it" or "don't I"
    We all want to have "it", as this will give us a chance to be treated, feel better, go home and live our "normal" life. The thing is I don't even know anymore what the "normal" is. I am on my way to New York, never anticipated that this was my way of visiting the city. I hope Dr.S will fix your body, the mind does not fixing, you seem to handle thing very well. I wish I could do the same. Good LUCK to you and Barbara.