CCSVI: Update with MRI results

Yesterday I went into the MRI machine-from-hell again to have my brain and neck checked out.  It was the loudest exam ever, with the added bonus of shaking, pounding and thumping—a true virtual experience!  The ear plugs didn’t work well for the first part. I had the really great techs pull me out and readjust the plugs –I pushed them so far in my ear I wondered if they’d come out—and my ears were padded with little bags that they use for positioning. When I went in the second time, I was given a  gentle warning that there’d be no more chances for readjusting and then the sounds were more muffled but the pads were pushing my jaw out of alignment.  So, painful either way.  I spent my time thinking about how nice my pictures were going to come out. That, and I thought quite a bit about the movie I watched the night before about a woman named Irena Sendler who helped 2500 Jewish children escape from the Warsaw ghetto in the 1940’s. I mean, how much pain did all of those kids and their families experience? My pain = nothing.

A few minutes ago I received a call from my neurologist with the MRI results.  My brain was “stable, no changes, nothing enhancing”.  My neck is a mess with bulging discs and some impingement at C-7 (which is the source of my right arm’s pins and needles).  She was wondering if a lesion at C-2/3 was new, but it wasn’t enhancing so it wasn’t active. She said it probably has been there just not picked up on the last scan.  Lesion at C-4 is small, unchanged, old.

What exactly does this mean, in relation to my CCSVI procedures since my last MRI?  I’m not progressing! That’s all I know, because this doctor won’t believe in a connection between my MS and CCSVI until “more research is in.”    In our conversation, she alluded to my liberation by expressing concern that I’d step over the line (she means a stent).  She knows that her arsenal of drugs is of no use to me, and perhaps she thinks (but just for a nanosecond) that she is of no use to me either.  Maybe I’ve graduated from her MS class and am moving on with my life.  Like an inspiring teacher who believes her student can succeed and sends her on her way to do just that— that is how I regard this neurologist.  One day, I hope she’ll regard me as a survivor and not a traitor. Until then, I celebrate the good news of a stable brain MRI!!!

ps. Yesterday I turned in all of my UNUSED Copaxone syringes! One more bridge burned.


4 thoughts on “CCSVI: Update with MRI results

  1. Donna,

    I find this quite exciting. I naturally empathize with the MRI hell – I have numerous schemas that I engage for myself in coping with my 3-4 of these per year (or more) with my current conditions. Not fun – but I too consider those who have REAL suffering in their lives and find I can endure an hour or so of relative no-pain just fine while I practice meditation and relaxation. As far as your results – absolutely excellent. I am so encouraged for you and for research. Are you engaged in a research study for CCSVI? If not, that’s OK – I applaud your own hupsba (sp?). That being said – will you be following up with MRI’s in the future and leave the door open for other types of care? I know the frustration with all of this – believe me! My personal opinion is that we need to seek out all of our options – that we know our own bodies the best – and that we need doctors that listen to us. Keep it up, sister! If you have time – would you like to research my condition for me??? Hahahaha . . .

  2. Hi Laurie,
    I’m not in a study although I went to that particular doctor because he was starting one. The day I was first in his office was the day he rec’d news of the its approval. It was an unfunded study and my insurance co was not interested in paying. I’m not sure how it’s going, but he was a speaker at the International Vascular Research Conference in Italy a few weeks ago, so he must have something to report!
    I’m still not sure if I know all of your med issues. If you send me a synopsis, I will be glad to do some looking and thinking. Wait, you were laughing so you’re prob joshing me. Bwaahahaha! Good one!
    I will be getting MRIs in the future–distant future I hope. For now, I’ll move forward and do all the things I can to get closer to wellness despite the years advancing on my body.
    The mind-body connection is more and more obvious as the years go on, and I’ve got so much to learn!
    It was so good hearing from you! Thanks for writing!

  3. Cheers to a stable MRI! Your MS newsletter article was great… it certainly didn’t make me miss the “dirty time” in New York. All the more reason for you to come visit us in Florida soon. Love you and your writing!

    • Thanks for reading! I’m always surprised when I get a comment because I figure no one’s reading anymore!
      I have really missed my annual Florida trek. Not only to avoid this dirty time, but more so I could enjoy the company of you and Shawn. I miss you both. Sigh. I look forward to the day when we can see what snowbirding is all about and be in your area for months at a time (like in NSB or somewhere, like Aunt Marge.) Maybe I’ll learn to like Settlers of Cattan–miracles do happen!

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