Saturday, August 14, 2010

CCSVI Diagnosis and Treatment Log Entry #10 – Results of My Ultrasound Examination

New York City skyline with Empire State Building
Image by meironke via Flickr
It is only possible to live happily ever after on a day-to-day basis.
  - Margaret Bonnano

Now that Kim and I have travelled to New York City three times in the past five months, for CCSVI related reasons, I find myself growing negligent in my sworn duty to hate the Big Apple. New York is beginning to grow on me.

I was raised to loathe New York City, primarily because our Boston sports teams competed with theirs. I not only hated the Yankees, Jets, and Knicks, but by extension the Empire State Building, Central Park, and musicals (both on-Broadway and off). Evolution has favored the human trait of “in-group loyalty.” Unfortunately, this trait naturally gives rise to “out-group hate.” Why? Maybe it’s because by denigrating outsiders, if we don’t entirely love the circumstances into which we are born at least our condition seems favorable by comparison.

Although New York City continues to grow on me, I won’t be moving there anytime soon. And don’t worry Red Sox Nation, there are some absolutes in this world after all. The sun will rise in the east tomorrow, a bear will shit in the woods tomorrow, and I will still hate the Yankees tomorrow (and musicals).

In March I was diagnosed with and treated for a condition called CCSVI, which is believed to be related to multiple sclerosis. This occurred at Brooklyn's Kings County Hospital Center, under the direction of Dr. Salvatore Sclafani. That was NYC trip #1.  To read about my CCSVI experiences, click here.

In late July of 2010, Kim, Zach, and I traveled to New York to attend Dr. Sclafani's CCSVI symposium. More precisely, I went for the symposium and Kim and Zach went for the sightseeing. They learned a lot about the New York City subway system that day - some good and some bad. This was NYC trip #2.

I thoroughly enjoyed the symposium. I was able to listen to and even rub elbows with some of the top CCSVI physicians and researchers in the world. I also met with several of my online MS/CCSVI buddies, and spent time with members of CCSVI Alliance, the non-profit organization that I volunteer for.  I had hoped to combine the symposium trip with an ultrasound examination at Kings County Hospital, but unfortunately the doctor who was trained in that procedure was unavailable on that day.

So, just two weeks later, Kim and I made NYC trip #3 for the aforementioned ultrasound test. Dr. Zamboni, the Italian physician who coined the term CCSVI, developed a specific doppler ultrasound protocol to determine if a patient does or does not have CCSVI. In order to meet the diagnostic criteria for CCSVI, a patient must demonstrate two or more of the following five criteria during the ultrasound:
1. Reflux (blood flowing in the wrong direction) in the internal jugular veins, in the vertebral veins, or both.
2. Reflux in the deep cerebral veins, and/or in other venous segments of the intracranial compartment.
3. Evidence of internal jugular vein narrowing (stenosis).
4. Blood flow not detected by doppler in one or both of the internal jugular veins or vertebral veins.
5. The cross sectional area of either internal jugular vein is wider in a sitting position than in the supine posture.
I met none of these criteria. Well, at least I don’t think I did. The examining physician, a colleague of Dr. Scalfani’s who was trained just a few weeks ago at Dr. Zamboni’s clinic in Italy, still considers the test somewhat subjective.  I am grateful that he was frank with me about that. He’s doing his best, but it’s not a straightforward task by any means.

How do I feel about the results of this latest visit to Brooklyn? Should I consider it good news that I don’t have CCSVI anymore, or should I consider it bad news that there is nothing more that can be done for me right now? Excellent question- I wish I had an answer. I wish I had a lot of answers.

What, then, is going on with my CCSVI and my MS? Here is where things stand:
  • It’s still too early for me to say with certainty whether my disease progression is the same, slower, or non-existent. Stay tuned.
  • It is not too early, however, for me to state that I’ve definitely not improved, as many others have (although not everyone).
  • Based on what Dr. Sclafani saw in the March venogram, I almost certainly had CCSVI in my internal jugular veins and possibly in my azygos vein. He ballooned all three for good measure.
  • Based on the ultrasound test this week, I likely no longer have CCSVI type problems in my internal jugular veins. We can’t know about the azygos, as this ultrasound test does not look at that vein.
  • I may or may not have flow restrictions in various other central nervous system veins such as the lumbar and vertebral. Even if I knew that these veins had restrictions, we couldn’t know yet if this would affect my MS. Furthermore, even if we knew it could affect my MS we probably couldn’t treat those veins. Much more study is needed.
  • There is nothing further that can be done for me right now relative to CCSVI, although as we learn more about CCSVI there may be procedures I can undergo later.
What, then, is going on with my general sanity?  Here is where things stand:
  • Going forward, I need to keep my finger on the pulse of CCSVI research while not obsessing over it.
  • I will try to heed the words of Margaret Bonnano (at the top of this post), and “live happily ever after on a day-to-day basis.” It will not be helpful for me to long for the healthy days of my past, or worry too much about my uncertain future.  I need to stay in the moment.
  • I am alive; blood is coursing through most if not all of my veins; and despite everything I am still Enjoying the Ride.
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  1. Thanks, Mitch, for such a condensed yet comprehensive explanation. May I have your permission to show this to my neurologist?
    As far as the team rivalries...having been a Phila. fan all my life, I know the feeling. While North and Central Jersey root for NY teams, we in South Jersey root fot Phila. (You'd think it was an enormous state with all those divisions!) I think we may have coined the term "Damn Yankees." (Ooops -- a show tune reference!) I do like to visit NY and see the sights, watch the plays, and observe the throngs, but I will never succumb to liking the sports teams. (And...not all Phila. fans are like those in the news!)

  2. Hi Mitch, Love your blog... On the fence about CCSVI, though I did ask my neuro md Dr stein about it. I commend you on your willingness to leave no stone unturned. I still have a bit of denial resonating int head (how could I possibly have PPMS while working in MS research so long.. Would I be pregnant if it had been ob-gyn research ?) We just keep treating my symptoms and hoping for the best. I'd love to catch a game with you an Kim again. Let me know if you will be down.

  3. Muffie,

    Oh yes, please show my blog to anyone you want, including your neurologist. You may also want to show him I kind of identify with Philly Phans a bit. We're in different leagues in baseball and football anyway. Thanks for stopping by.


    Very funny about getting pregnant if you did obgyn research. It still freaks me out how my MS clinical trial coordinator (you)later got the same disease you studied, and one that is not contagious. Unfortunately I can only get two tickets at a time now for Sox games. Its a bummer.


  4. Hi Mitch,
    Good post thanks for explaining so well.
    Have a good day.

  5. Mitch,
    I share your sentiment with regard to the CCSVI emotional backlash when one hardly feels "liberated" as I. I believe you were in NYC just after me. At that time I was actually walking like Frankenstein. I now gimp like Frankenstein on crack with the aid of what i refer to as my "hickory"stick. You mentioned keeping you finger on the pulse. I tried for several months, but it did become an obsession. And the fact that I have verterbral septums and God know what else is not so encouraging at this juncture. I admire your upbeat attitude, although I find it so difficult to emulate, and your ability to take it a day at a time.

  6. Greek,

    Thanks for stopping by and commenting. Unfortunately, at this early juncture in the CCSVI discovery process, the more difficult cases like you and I may not make the "first cut". Hopefully, eventually, we'll be included.

    Hang in there.