CCSVI: The Saga Continues…

When Dr. Mehta of the Vascular Pavilion in Albany, NY first told me that he and I were going to friends for a long time, I realized he was losing sight of my mission statement: Find out what’s wrong with me, fix it, and let me live my life. Without you.

I went back to see him for a venogram and venoplasty in late September. The plan was to balloon whatever needed opening, and to put in stent(s) where needed.  My speech issues had resolved, but I just wasn’t feeling well– in the MS way, I mean. I was irritable and cranky, and could not snap myself out of it.  The wait in the holding area was long and not eating for 15 hours did not improve my mood.  When I was in the holding area, I was asked to sign the consent form and met with the doctor. He asked for my consent for an extra component* to the procedure, just in case an obstruction made it necessary to visualize the vessels from the brain flowing down. This extra step*, I was told, had a risk of stroke, and the numbers, which I can’t remember right now, were way too high for me, so I declined. The doctor was fine with that (and it turned out to be a moot point later) but it was obvious even to him that my demeanor was, less than stellar. You know when you become aware of being as miserable to yourself as you are to others? That’s what I felt right then, and I didn’t care a bit.

So, the venogram was done, and for the first time I experienced heart palpitations during the procedure. They say it’s from the catheter ‘tickling my heart’.  It was scary and freaky! [I was later told that patients who enter the procedure room with a cranky outlook have a higher incidence of heart flutters. I wonder if that’s really been studied or if it was a dig to my less-than-stellar attitude that day??]  Recovery was uneventful and after about an hour I could sit up, drink and, finally, eat. (15 hours of not eating was unpleasant!)

When the doctor came in, I got the good news/bad news routine. The good: my right internal jugular vein was open and flowing well. The bad: my left IJ vein was closed down. Reopening was attempted but impossible;  stent placement was therefore not possible, either. (I imagined it was like a straw stuck together with a wad of bubble gum. Try to get a smaller straw through that?) There were still  collateral veins open around the blockage, but the flow was not optimal.  The only thing to do–a vein graft.  [I hate to admit it, but I was told that I have one of the worst problem left IJ vein’s he’s seen.]

Vein grafting in the neck is not a common practice, and is mostly done, from what I understand, in patients with neck cancer. And well, for treatment of this ‘new’ CCSVI, it’s virtually unheard of.       [I did hear of one man who had it done at Mayo Clinic a few months ago.]  That said,vein grafting obviously needs to be researched and approved studies need to be done, and that’s where Dr. Mehta is right about now.  And I guess I’m there with him, too.  You know, because we’re friends.

*this extra step is sometimes done when a patient’s veins have restenosed and can’t be assessed by the usual dye flow. It is not, to my knowledge, done during the first venoplasty.

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3 thoughts on “CCSVI: The Saga Continues…

  1. Hi,

    I found this post quite fascinating and interesting.

    I know very little about CCSVI; here in England it is not recognised at all and i only know about it from what I read on the various MS sites worldwide.

    Can you tell me – is it a treatment just for RRMS or for all types OF MS?

    Christine

    • First let me say I continue to enjoy your poetry. In a long ago life I used to write poems too. You make me think about trying that again!

      Thanks for reading my blog! I know a little about your struggles finding help in the UK. (facebook friends!) I have RRMS and saw great improvements after my first procedure. You can read about it in the blog entries from last fall (2010).
      CCSVI treatment is not a cure for MS, but if you have it, (and a high percentage of pwMS have CCSVI also), it should be treated. People with all types of MS have received treatment and experienced positive results although they say those with PPMS don’t respond as well. There are so many factors to consider….how long person’s had MS, nerve damage location, general health of the person, smoking/nonsmoking, good nutrition, and I believe, outlook has a huge impact too.

      I hope you look into it and find a way to get treatment if you need it. MS can suck the life right out of us. Don’t let it.

      ps Sites sponsored by drug companies and/or National MS societies will not admit that CCSVI is related to/impacts/affects or is a key to less symptoms. THEY’RE LYING.

  2. Wow, Donna, this is all very – well, concerning. I have to say I had hoped for a longer stretch of a bit better outcome. Are you hopelessly discouraged or discouraged? There is a difference. These things are so difficult and tedious. Are there any studies being currently conducted – (sorry I know I am not keeping up). Thinking of you. L

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