I’m extremely disappointed to report that the pain level is pretty much back to pre-surgery levels, although it’s not in the same place. Whereas before it was across my shoulder blades, with a stabbing pain in my right shoulder blade, that stabbing pain is now mostly in the left shoulder blade and the constant pain is across the middle of my back, between the level of my shoulder blades and where the device is. I have a constant feeling of someone kneeling on that area of my back, with flare-ups of someone else jumping on it.
Having changed to program three and not seen any improvement, I spoke to Karen the neuro physio. She said the stim doesn’t really work in the way of increasing the frequency provides stronger relief. It is more about finding the program that suits best. She advised returning to program one as that seemed to be the one I got best relief from. By the it was less than a week before I was due to see the surgeon again.
I had my first follow-up with Mr Mundil on Tuesday. Whilst he could understand my disappointment with the backward step, he said it is not unexpected as things settle down, and the paddle might move fractionally and not be hitting the same nerves quite as well. It’s also not an exact science as to how and where the paddle needs to be programmed for targeting. Abbott have their algorithms for types and location of pain, but everybody is different and it can take a while to get it just right. I am going to a programming clinic in early September and Mr Mundil will be there to speak to the Abbott technician to try to determine what adjustments should be made.
He looked at where the wounds are in relation to my new pain, and said it corresponds to where one of the wounds is, and so it might be the scar tissue that is causing the pain. This could even be getting aggravated by the stimulator, and they can look at targeting that when they reprogram it. He also hasn’t given up on them targeting my foot. Of course he said there is an outside chance that the stim isn’t actually helping at all and the relief I had initially and changes in pain are a consequence of the surgery. In order to hopefully show the stim is having a positive effect he has asked that I turn it off completely for a week before that clinic. Whilst I really hope the stim is having a positive effect, that of course means that is likely to be a very rough week. 😒
After my appointment I popped into the office to say hi to a couple of new members of staff. It was weirdly nice to be back in those surroundings and chatting about a few work bits and pieces.
I then went for my first hydrotherapy session. Kate, who is seen in outpatient physio therapy did the session, and there was a trainee physio with her, Biju(?). To start with Kate got me just walking forwards across the deep end. I was a bit wobbly, particularly on my left foot, but it was generally ok. She then got me to walk backwards for several widths. That was a more interesting experience, but I did manage, albeit feeling very unstable. Kate then told me that the next thing would be to walk sideways! My initial reaction was this would not end well, but she once again reassured me that we fall 14% slower in water, and there were two of them to catch me! 😀 I opted to do it with my feet facing up the slope as I generally feel safer walking up slopes than down. It turns out I’m quite a lot better walking sideways than I am forwards or backwards, although this isn’t an approach I’ll be adopting when walking around town etc. 😜
The next exercise was standing on one leg. Kate explained to Biju that I’d managed less than 5 seconds on land, much to Biju’s surprise. I started on my stronger right foot and after a few seconds getting my balance, I didn’t do too badly. My right foot was constantly on the go, and couldn’t work out if it was because of me naturally making rapid adjustments to keep upright or whether it was the tremors I get. Either way, I think I managed 30-40 seconds. I then went on to my left leg. After taking my time to try to relax and settle myself with mist of the weight on that foot, when I tried to lift my right foot off the floor I immediately started to fall. Not good at all. 😏 We finished the session with practicing sit to stand without using my arms to push myself up. I felt the first part of getting up was ok and then my legs started to tense. Kate pointed out that for the first part of course my body was submerged, and it was when my torso started to emerge from the water that I started to struggle. I managed quite a few repetitions though. I’m not sure how many, but way more than the 10 Kate asked for, as she distracted me by somehow getting on to talking about diving whilst I was doing them.
I was in the pool for about 25 minutes in total, and I was definitely starting to tire. By the time I’d showered and dressed I was knackered, to the point where I was going to walk back up to the main entrance to wait for Ruth to finish work and come to collect me, but I ended up sitting at the entrance to the hospital nearest physio.
I haven’t noticed any particular effects from the hydrotherapy in terms of leg ache etc. Friday though my back was quite bad, and I’ve had some rough nights trying to find a position that is comfortable. Yesterday afternoon we popped into town for an hour or so. Ruth needed to go to the post office so I decided to brave the stairs, as I’d not tackled more than the odd one or two since surgery. It was a struggle but I felt ok taking it very slow and steady. For the second half of the flight I found I really needed to always lead with my stronger leg. After Ruth sorted out her postage I was starting to get quite a lot of pain and opted to take the lift back down. In the car coming home it was like back to the bad old days. Every little bump in the road triggered another agonising jolt. It took a good hour or so, and meds, when we got home for it to settle back to anything like manageable. Whilst it doesn’t feel too bad this morning, I have once again had little sleep as it took a long time to get comfortable, and after I woke up at 6ish for a pee, I’ve not been able to get comfortable again.