CCSVI Liberation #2

I got back from Albany around 6pm (another 12 hr day).  I’m still a bit groggy but feeling good overall.  As planned, I want to give a shout to my little grand-nephew Evan: “Yay! I did it!”

New finding: the right IJ vein was 80% shut down and was opened without problem or pain.  Other veins checked: azygous and vertebral and they were all good.  Yay, me!!   Then there was an unexpected result:  My left IJ that was cleared last month was found to be partially restenosed. I guess last time I had two sections that were bad in the IJ…lower section was 80% closed and the section above it was 100% closed. It was ballooned then (no wonder it was so painful!); this time Dr. M wasn’t willing to chance ballooning it again and pretty much declared it a dead zone.  The good news:  collateral veins opened up to circumvent the damaged section of vein and flow is okay just not as good as it should be. Sort of like a detour off of Rt 81 through a busy section of Rt 11….)

Now anyone who has had this procedure done goes through periods when the thought comes to them, “What if this vein closes up again?”  I was no exception, and those thoughts came with a vengeance when I had some ‘down days’ attributed to other issues. I maintained a much higher level of activity and energy, and balance and cognition issues were greatly diminished during the whole time. BUT there have been times in the past couple of weeks when I’d hear squeaking sounds in my left ear; I thought I was swallowing air or something, but now I wonder if that was the sound of collateral veins opening???  I asked the doctor and he said that ‘we are so far ahead of the learning curve that we just don’t know’.  Apparently, so far, there have only been some 3000 or so liberations done  around the world!  I’m super proud to have had this chance to be one of them!



4 thoughts on “CCSVI Liberation #2

  1. Three steps forward one step back leaves you two steps ahead . . . for everyone. I do hope things go better with this side . . . but it has to be helpful to at least know some things about what is really going on. I’m praying for you Donna! Have fun with S & K.

  2. Hello, Donna

    I hope you remember me from lovely Solvay, and, I also have MS! I had my first symptom when I was 23, optic neuritis, but it was minor and cleared up with steroids…It was about 15 years ago I was diagnosed. I am having problems with my vision, balance, spasms,memory and also IBS…. it seems to go along with MS.

    I’m taking Copaxone, baclofen , vitamin D3, B12, and several herbal supplements. So far, so not so bad.. I work part time at the Solvay Public Library and I can still get around.. I read that you had the surgery to clear out the veins. Let me know how that works.. BTW, did you know any of the Zingaros? Both Karen and her brother were diagnosed with MS

    • Hi Dennis,
      Yes, I remember you! Sorry to hear you’re in the MS club. Was it something in Solvay’s air or water, I wonder?? I’ll keep posting about how I’m faring with the vein treatments. I would recommend everyone go for testing (by doppler scan/sonogram) to see if they’re affected. I would bet (if I were a gambler) that most MS’ers would have abnormalities in their jugulars. And I would also bet that within the next year or two there will be giant strides made towards solving the MS mystery. Thanks for reading!

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