Wednesday, March 17, 2010

CCSVI- Diagnosis and Treatment Log Entry #4

I have a couple of hours to kill before I leave for the hospital this morning for my CCSVI venogram and possible angioplasty, so I thought I’d blog for a few minutes.

I was critical of MRV’s and ultrasounds in my post last night. Let me qualify that a little bit. For someone in my situation, who will be getting the gold standard for CCSVI diagnostic tests later today (venogram), the noninvasive tests I underwent yesterday are relatively unimportant to me.

But we do need to come up with a set of noninvasive tests that are accurate and repeatable, for a couple of reasons. First, administering a venogram to every MS patient in the world would be a tough sell, today anyway. It is an expensive test, and it is somewhat invasive. So we need a screening tool, but it can't be a screening tool that has high false negatives or high false positives. At this point in the early “life” of CCSVI, it takes someone with the experience level of Dr. Zamboni’s team in order to accomplish this. It takes practice. It takes repetitions. Some organizations around the globe are starting to gain this valuable experience, but so many other organizations are just getting started.

Second, we need a noninvasive test in order to examine those patients who have already undergone a CCSVI procedure. Those people will want to have their CCSVI repair evaluated periodically in order to determine if the veins that were opened have closed (re-stenosed). It’s not practical to have those patients submit to an invasive test every six months or year.

So, although I consider the ultrasound and MRV to be imperfect tools at this time, I am not advocating that we discard them. I am advocating that we perfect their use in CCSVI diagnosis.


  1. You are definitely an engineer at heart Mitch. I can tell that you rethink things over and over at night. I do the same. Good Luck today. I'll be thinking of you.


  2. Well said. I'm thinking of you and hope all goes well today. -Jess

  3. I must be confused. I thought "VenoGRAM" was short for Magnetic Resonance Venogram (MRV) and "Venography" was short for Catheter Venography. Do I have that backwards?

  4. In this blog I am using the terms venogram or venography torefer to the catheter procedure.

  5. Thinking of you, Mitch and Kim!

    Miss ya, Kim!

    Hope all is well...

    Nurse Cindy

  6. Wishing you the best, Mitch. Hoping for a good outcome for you today. My wife's MRV is tomorrow, so we're kind of in the same boat. Here's to easily corrected stenosis. Andrew aka Hoodyup

  7. Hi Mitch
    I am pretty new to your blog, so maybe you do this fairly often, but I am impressed with your open-ness about the procedure, right as you are waiting for it to begin!
    I find your honest sharing to be "inspirational," and not in that goopy way that clings to everything long after you've said your piece.


  8. OH WAIT --

    "and best wishes," I DID mean to say that...

  9. Thank you for sharing your journey with us. You must be a kind and caring person to allow us the insight of your journey. I pray good things for you.

  10. Remember at work when someone would send a super long email and just one of us would read it and tell the other one if they shoudl bother or no...I needed that for this post! LOL I totally scrolled down to "The Bottom Line." :-) You know who

  11. Well, "you know who", at least it was a short post!