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.