The reprogramming clinic session was kind of interesting. Karen introduced me to the Abbott technician (whose name escapes me so I’ll call her Flo as she had a floral dress on) and then asked for a recap of how things had been going since we last spoke, and in particular over the past week. Given that the pain across the middle of my back hadn’t really subsided since turning the device off, she felt it wasn’t a case of over-stimulation affecting the scar tissue as Mr Mundil had suspected. She thinks it might just be a more generalised pain from the scar tissue itself, more muscular than stimulator related. Karen and Flo then proceeded to look at the settings, and see where tweaks could be made. I’m afraid Flo was not exactly confidence inspiring, as Karen seemed to be having to show her how to use the app itself, let alone have her contribute to what settings might be best.
As they increased the stimulation on the electrodes affecting my right side I could feel an increasing tingle in my right shoulder. That got quite strong before I could feel anything elsewhere, but I then got a mild tingling in my right hand, and eventually a very faint sensation just below mid right elbow. They then tried to target the left side, but I could still only feel sensation in the right. Eventually Karen suggested they turn off the stimulation on my right side, and sure enough I could start feeling it on the left. They therefore proceeded to adjust the settings to try to optimise the left side. Having settled on those settings they then turned the right back on and weirdly all I could feel was the right, and nothing on the left, despite the fact it had been left on the same settings that were giving me sensations previously. Karen concluded that, whilst the left side was clearly working when used in isolation, and therefore was targeting the correct area, my brain only recognises the sensations on the right if I have both together. It’s almost like there’s something a bit weird with my nervous system! 😆
This reminded me to tell Karen that, since I’ve been using ice packs on my back, I have discovered that I can’t feel temperature on the right side of my back now. If you’ve read my early posts you will know that one of the first things I experienced when I started having issues was a lack of temperature sensation in my right leg. I don’t know how long that has been happening above my hip, so couldn’t say if it is a consequence of the latest surgery or not. I had been meaning to do some experimentation with an ice pack to see how far up my torso, and how widespread this sensation is, and Karen has said it would be useful to know for next time, so I must subject myself to some ice torture at some point. 🥶
Whilst I was there they also signed me up to be able to use the latest version of Abbott’s patient controller app. As well as being able to manage the device (as the previous version did), this version adds their “Neurosphere” capabilities, including virtual clinics, meaning that my future reprogramming clinics can be held completely virtually, with video calls and the specialist having access to adjust the stimulation remotely. A geeks medical paradise. 😀
After the session I walked back up through the hospital to meet a colleague for a coffee. Even in that short space of time I was already feeling so much better than I had all week, and once I’d got over being knackered from the walk from Neuro to Costa, I was able to sit for an hour in an ordinary chair without feeling too much pain.
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