Tuesday was the big day when the new device was switched on. Ruth and I went to see Mr Mundil who started with checking how things were going in general since being discharged. We were then joined by Sam, the technician from Medtronic. They spent about 1.5 hours going through various settings to assess where I was getting the best coverage. One of the features of the closed-loop nature of the Medtronic Inceptiv device is that it records the signals it gets back from the nerves when they are stimulated. This allows it to adjust the stimulation as you move around and the paddle moves closer and further away from the spinal cord. Unfortunately they determined there is too much scar tissue under the lower part of the paddle where the return signals are picked up, and so I will not be able to benefit from that bit of functionality. Mr Mundil said he had felt trying to scrape away any more scar tissue during surgery was too risky. As he had previously commented, I heal very well, which is a good thing in most respects, but it meant the scar tissue was as hard as bone in some places.
They continued to try different settings whilst I was sat down and got it to a point where I was getting an even coverage across both sides. They then asked me to arch my back a bit. Wow, was the stimulation intense! Back to further adjustments. Eventually it was set at a point where it was dialled down to be imperceptible most of the time, although I got some tingling when I moved my arms in certain ways. We decided to leave it at that and see how I get on.
First night
When I laid down the tingling became more noticeable, particularly in my left shoulder. I wouldn’t say it was uncomfortable, just unusual. I’d also get some quite strong sensations in my right arm as I moved around. I didn’t have a great night as a result, although perhaps no different to how most of my post-discharge nights have been. However, yesterday I felt awful – completely drained, a bit nauseous at times, and feeling a bit dehydrated despite drinking quite a lot. I had a couple of hour-long naps during the day. Whether that was the disturbed night, the heat, or whether the activity the previous day had taken its toll I don’t know, but I had no energy at all.
Not only me that had no energy
Sam had not been able to pair the charging device to my generator at the appointment, but he thought it was because it had become discharged whilst sat in storage, so he asked me to take it home and plug it in, and he would then call to go through the pairing process. He rang yesterday afternoon and we tried several times to pair it, including him getting advice from the technical services team, but it just wouldn’t play ball. He has therefore ordered a new charger, but it was too late in the day to get their overnight delivery, so that won’t arrive until tomorrow. He advised I not let the generator drop below 20% charge as reconnecting everything would be more complex if it was to drain completely. Unfortunately I hit that 20% mark about 7.30 last night and so had to turn the therapy off and go back to the pain meds.
There’s a big positive to take from this though. They had both said it might be a week before my body has really got used to the device and I would see the benefits. However, given that I had little back pain whilst it was on yesterday, despite feeling so generally crap, and the fact the pain returned so quickly after I turned the device off, this bodes well for me getting good relief when I’m able to get it charged back up. The expectation is, given the amount of stimulation I need, that I will need to charge it roughly every 2.5 days.
Poor sleep again
Last night I was very disturbed again, although it was my right arm causing the problem. My elbow and shoulder just constantly felt like I’d pulled some muscles. However I put my arm down felt like it wasn’t being supported. As of this morning I don’t feel great, but definitely better than yesterday. A nice restful day is called for. Hmm ok, as restful as I can get with workman building decking and erecting new fencing around the bungalow! 😏
Referral to pain consultant
During the conversation with Mr Mundil we talked about understanding my underlying condition, how it’s going to affect me long term and any other non-surgical care that might be beneficial. It’s taken me far too long to fully accept the extent of my disabilities and to ask for help. Talking to more experts through this last period was a big step forward, and I wanted to make sure I was asking the right questions of the right people. For example one of the physios had suggested I look at the Spinal Cord Injury Association. When we asked Mr Mundil about it he said mine is much more about the nerve damage rather than a spinal cord injury (although that seems to ignore the spinal cord adhesions that I still have and which cause my mobility problems). He said he has been working with a new pain consultant at the hospital, and is run a joint clinic with her to discuss patients like me. He is going to make a referral with a view to me meeting with both of them initially, and then continue with her with regards to the psychological aspects of managing my condition, and the appropriate timing and rate of reducing the various medications. Ruth and I were really pleased to be offered that type of support. I know Ruth has been worried that I’ve been in a bit of a state of denial. Whilst I may well be right in saying there are a lot of people with much worse problems to deal with than me, it doesn’t mean I don’t need (and deserve) appropriate support. 🤔