My quest for healing continues.
I met with a physical therapist yesterday, after getting a referral from my GP, to address the tight trapezius/shoulder/neck problems on my right side, related to my stent procedure on 9/16/2009. I got a set of daily stretching exercises to use to treat this, and a recommendation to hold off on free weight exercise until the trapezius thing starts to resolve itself. I am also getting massage once a week to help work out the stiffness.
I am taking short daily walks to get some exercise, and to try and rebuild my stamina. I had hoped to restart 4.5mg LDN nightly to help with this, but gave this up after one night when my nighttime spasms and bladder/urethra leakage seemed to worsen as a result. I may restart soon at a 3.0mg level, haven't decided yet.
I am still only able to sleep flat on my back, and use heat packs at night to help with sleep. (As an aside, the night time spasticity I experience in my lower legs seems to be worse during the short stretches when I sleep on my side. Could the benefit I have felt so far in lower leg spasticity be a secondary effect of sleeping on my back, not the CCSVI treatment? So it goes with anecdotal evidence.)
I sincerely appreciate the hope that this whole experience has brought into my life, but my recovery has certainly been more difficult than I would have expected from reading the experience of others. I go back to Stanford for my 2-month evaluation in a few weeks, and am already starting to question what my response will be if the recommendation is for another procedure to treat new stenosis, or restenosis. I have had MS for 20+ years now, and have not experienced much significant benefit so far, particularly in the area of cognitive fog, lower body strength, and physical fatigue, my most troubling symptoms.
I think I can finally bend my neck far enough down toward my chest so that I can see well enough to begin self-cathing again at night. I've been getting up 5+ times a night to void (I use the term optimistically), and would love to get a longer night's rest.
I don't mean to cast a negative light on my decision to be stented last month, but it seems that what we really need is a progression and continuation of published scientific reports on CCSVI and its relationship to MS. Hope and anecdotal results are a good thing, but that's all they are. It might be wise for those considering this procedure to step back and truly consider what the benefit and costs (personal and otherwise) might be.
I look forward to being able to post positive results in the coming days and weeks.
And, here's a link to my CCSVI tracking post for anyone interested:
Questor's CCSVI Tracking Project Post
--Tracy