So how am I doing?

Wardrobe by Courage My Man, Kensington Market, Toronto - stent not included.

Am I as top o’ the morning as this vintage ray of sunshine appears to be? Well, just about!

I still know I have MS, or had MS damaging my nervous system for 12 years, whichever you prefer. One side is still noticeably number than the other, and I have a ringing in my ears that comes and goes, as I have had for years. Fingers on the right hand are a little stiffer than the left hand, though better than before the operation.

But on the plus side:

  • Whole days go by now without tripping over my toes
  • Feet warm and more flexible
  • Energy, energy, energy! I get by with 5 -6 hours of sleep a night, and rarely take naps.
  • Cognition – it never hurts to think anymore, and so my writing is not the chore it was becoming in the last half-year before Poland.

Residual sensation of the procedure? Well, for the first month I could usually feel where the stent was in my neck. Not pain, but some discomfort. That’s mostly gone now, just the odd twinge that is not pain, just “presence”. But even that seems to be fading by the week.

I am still on my Plavix blood thinner pills, which I will keep up for a year after the op, and the stomach coating pills that accompany it. I take low-dose buffered aspirin, 1 per day, and will for the rest of my life.

So what to take for my experience? Just this – I  personally would do it again. So if you are reading this to try and figure out what to do for yourself or what to recommend to a loved one, please take it as my story — just one story out of hundreds.

To make your mind up you need to click around the internet and do some research. Hit Facebook and search groups with CCSVI in the name; there are dozens now and each seems to have its own group of people returning or about to set off. Click the links on the right side of this blog, and then click the links those links take you to. Read widely, consider your options, and decide for yourself.  I believe we will have the Liberation procedure in Canada within 3 years, but meanwhile there is Poland, Bulgaria, India, and who knows what tomorrow, all with different costs and pro/cons. Join the community of interest around CCSVI; you don’t have to be alone as you work out what is best for you.

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11 Comments

Filed under Post op

11 responses to “So how am I doing?

  1. Hello, sounds like there are a lot of positives, who knows what the future holds for MS sufferers now that Dr. Zamboni and people like you have brought some much needed attention to MS. Best Wishes.

  2. sherry

    Thank you so much for sharing this experience, I am learning and waiting hopeful of treatment here in Ontario soon.

  3. Thank you!! I appreciate your up date so much on how you are feeling. I also appreciate your respect for all of us to make our own decision. I appreciate your advice. My son is going to Poland on June 17th, to have treatment done on June 23rd. I will let others know also how this goes. For the first time in 13 years, we really don’t feel alone now.

  4. Crystal

    thanks you so much for sharing. I was diagnosed with MS 6 years ago. I am going to Barrie Ont. to be tested for CCSVI soon!

  5. Bridget Fitzpatrick Wehmeyer

    Wow, to not trip over your own feet anymore, that in itself would be HUGE for me!!

  6. natalie

    Hi Crystal,

    How were you able to get a referral to Barrie Clinic.
    My son who has MS is not able to get a referral from our GP. She said she is not comfortable to make the referral??? Very upsetting. She said his neurologist would have to refer him. This is Dr. Mark Freedman in Ottawa who is not supportive of the treatment.
    Thanks for sharing.

  7. Penny White

    re. Barrie Clinic…. I am disappointed the Montreal scanning opportunity has ceased. Like Natalie I too would like to know how one contacts the Barrie location/radiologists. I have a neurologist who will refer me — or said he would three months ago. But I don’t know whom to contact . I would not undertake Bulgaria or India or Poland without first hearing I DO have blocked veins.
    Evan, why is a Barrie site not a link on your webpage? Maybe I missed some important recent announcement??? I’ll try the MS Society webpage (yeah, right, they’re so helpful)
    I’m delighted you are feeling well!!!

    • Joanne

      Just to let you know, a good friend of mine is associated with the Montreal clinic. After having scanned many many MS patients, they confirmed to me that 100% of MS sufferers have CCSVI ! So, assume you do too!
      Good luck, Joanne

  8. Nick Whalen

    Just wondering how things are going 3 months on. I hope all is well.

  9. Katrinka

    So now how are you doing? It’s summer and warm – how is that affecting you? Lots of sun (and rain and cloud and everything) – any noticeable differences?
    Cheers

    • Doug

      I first had MS in 1974, when I was 28 (I’m now 63) mostly affecting my right hand and forearm, and a lot of fatigue and fevers. It was quite scary because at the time I was a draftsman and I couldn’t write or even hold a pencil properly. I was off work for about 3 months but I gradually recovered with my wifes help (I didn’t get much help from my Doctors because they didn’t know much about MS at the time, or so it seemed ).

      The numbness and tingling never really left my right arm but everything else got better until the monster came back again in 1996, at age 50, this time causing my left leg to drag when I was walking, eventually developing into foot drop and a myriad of other not so visible problems, causing me to stop working in 2006 and go on disability benefits.

      Anyway that’s a brief synopsis of my story. My best wishes to you and your brother and all the other MS sufferers out there.

      Hopefully were on the way to a cure!

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