CCSVI–Post Treatment Update

Well, it’s been 2 weeks and 4 days since I was half-liberated in Albany by Dr. Mehta.  (I say ‘half’ because I only had my left internal jugular cleared.)  I had all the intentions of keeping a detailed journal but had a difficult time putting this experience into words worth sharing.  I mean, there have been changes, but the differences are so subjective, would they matter or make sense to anyone else?  If I wrote that on Day 4 I went out on an impromptu brunch date, stopped at the bakery, came home and vacuumed a few rooms, took a walk, visited my daughter and new granddaughter, made dinner and watched a movie without falling asleep would anyone understand?  I mean, unless you knew that I never did impromptu morning anythings, and never vacuumed and took a walk in the same day.  The subjectiveness of  my changes is exactly what makes people doubt that CCSVI treatment is a viable treatment. However, given that much of MS  is a slippery little subjective devil (aside from the visible MRI lesions or measurable neuro deficits), I can only tell my story  as it unfolds.

The fatigue that has always plagued me has diminished quite a bit. I wake up and actually get out of bed without rolling around moaning with dread that morning has come. I have less grogginess, and less of that ‘downer’ feeling that was so normal at the start of every day.  In comparison to pre-procedure, you might say that I pop right out of bed.  Not exactly true, but you could say it!  Half of the days since the procedure I skipped my second Provigil dose; most days I never realized I didn’t take it.    Originally I thought I’d keep things ‘the same’ to monitor the changes, but waver between taking the Provigil out of habit, being fearful that I will crash without it, and just ditching it altogether.

I’ve tried judging changes in my balance by that one crucial test we all know and hate. The Heel-Toe Walk. I deeply regret not taking a Before video; if I had it would’ve shown me tipping over, stumbling, twisting in contortions to stay aligned and achieve the desired result.  (Strangely, this is one of those things I always wanted to conquer because it couldn’t be done…)  Now, my After heel-toe walk is fabulous!!  I will show you if you ask me!

Walking is better overall.   I feel taller; maybe because I’m walking straighter?  At home I don’t slide my feet along the hardwood floors as much. My left foot still buzzes, but it doesn’t turn inward much at all.  I step up my stairs instead of pulling myself up by the handrail. My deconditioning is more obvious now that I am more active! I need to be dedicated to stretching and strengthening leg muscles as well as overall strengthening. (Objective observation: I went to Pratt’s Falls and took the .6 mile trail that had 117 steps down and 117 steps UP.)

Overall pain is less. Neck pain and spine pain less.  My increased activities have made some pains manifest in different ways, but not related to MS. [Back pain might actually be from cleaning the floor registers and vents or pushing boxes around the attic—things i haven’t done in many years!

Speech problems seem to be lessening. This is manifested by less grasping for words, stuttering, and blank stares during a conversation. Speech fluidity improved. An objective observation:  My husband says that I now tell him what to do four times faster than before.  (Yes!)  Another friend commented on increased speech ‘speed’ and overall ‘sharpness’ also. (what a good friend)

Vision problems are slightly better.  Double vision is diminished and returns only after long stretches on the computer.  I need an evaluation by an opthamologist and maybe new glasses to better ascertain some other vision issues—night vision problems, adjusting to dark after light, etc.

I am certain that the opening of my 90% compromised left jugular is having positive impact on my energy level, my daily activities, my outlook and my life.  I know that a lot of people are “watching me” to see how I do. It’s weird, but I’m totally okay with it.  Watch on.

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5 thoughts on “CCSVI–Post Treatment Update

  1. Hi Donna – I don’t know your ‘story’ so to speak, but it sounds like you have been through a lot. I’ve been getting to know just a little of that myself. Just wanted to let you know that you are in my prayers, and please feel free to write and let me know if you have a specific prayer request. God bless you and give you peace, healing, strength, and endurance.

    In Christ
    ~~~Naomi~~~

  2. This is excellent news, Donna. I wouldn’t be overly critical of your “lack” of objectivity. As a qualitative researcher working on my PhD I will tell you that one of the things I have learned is that there is no such thing as pure “objectivity.” Your subjective experiences are to be valued . . . as just that . . . your experiences. Just as your experiences before this procedure were valued as well. The fact that your artery was clogged and now isn’t is the only actual objective thing you have to go on. It is logical that there would be differences so if there are – be happy and not apologetic. If there aren’t that is OK too. It is a touchy thing, believe me, I know!

    I feel like I am experiencing the reverse of your situation having just had this brain blob (what I am currently calling the “thing” they have found in my skull until they decide what it is) discovered. I already had all kinds of symptoms that I passed off as migraines and that I knew were getting worse – and now that I know I have “the blob” my nausea, dizziness, headaches, lack of coordination, yadayadayada, are just a neon sign screaming at me . . . I don’t know whether I am getting worse because the blob is there or I am feeling worse because I know it is there . . . talk about subjectivity . . .

    • Laurie,
      Thank you for encouraging me to enjoy the joy of the subjective! I needed that reminder.
      I understand the ‘reverse’ you speak of. I remember the relief when my ‘thing’ had a name (MS) but then the unexpected cascade began–those microscopic judgments of each movement, ache or sensation began. Each had to be classified into: Real or imaginary? MS or aging? MS or menopause? ETC! It seemed like my mind was always filled with questions. That, of course, hasn’t stopped! 😉
      You’re probably already keeping a journal or better yet, a checklist of your symptoms. I made a chart in my notebook (yes, paper and pen because I’m so techno-phobic); it’s as objective as it gets for now. The problem is that too much symptom assessment leads to the obsessiveness that mucks up the waters of clear thought.

      Hoping you get more answers soon. Praying for that as well. ❤

  3. You go sister, I am soooooo happy this is helping, I can so relate. Love you lots. Keep up the good work & write that book!

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