Welp, as of last Thursday I feel pretty certain that my spinal cord is still getting damaged. The spinal arteriovenous fistula that presumably caused the spinal cord damage was embolized (glued closed) in September 2017. From what I understand though, embolization is only about 75% successful, so I guess I am in the remaining 25%.
Unfortunately, the only real way to know whether it has been successful is to monitor your symptoms and look for additional problems. Especially new problems or more than one problem changing. This has been pretty difficult given that I have been trying to do spinal cord rehab and constantly trying new medications and treating other side effects from the spinal cord damage (like sleep apnea).
Over the past few weeks though I’ve been slowly coming to the realization that I have more bladder urgency than I used to have (and one time where I didn’t get where I needed to in time which is ummm… “fun”). It would probably be far worse if I didn’t work from home. Then on Thursday my PT redid my muscle strength testing that was done in January at Craig Hospital and it was fairly clear that some of my muscles, which were rated as 5 out of 5 then, are no longer 5s. Given that I’ve been regularly doing PT exercises all year long I definitely shouldn’t be getting weaker.
I don’t really know whether the damage has been occurring slowly all year long and only recently did the damage become enough that it started making the symptoms worse, or maybe something recently changed and I just started getting more damage. I am pretty certain that the embolization did reduce the rate at which things had been getting worse. Definitely the rate at which I was getting worse in 2017 was much greater than 2018 has been.
So I’m off on the hunt through medical systems to find the right doctors and surgeons to diagnose and hopefully actually fix the problem. First step was two hours of MRIs this past Monday which I don’t expect to find anything new. I imagine I won’t really get anything diagnosed until I can get some neurosurgeon cutting into me to take another look.