Not what I wanted to hear

I had a review with the neurosurgeon yesterday and Jenny from Abbott was there to see about any reprogramming. First off Jenny ran a check on the SCS and looked surprised/puzzled and ran it again. The reason for her surprise was that the impedance test (checks the signal to each of the electrodes on the paddle in my neck) showed that 10 of the 16 electrodes failed. They checked my record from when it was tested in September and then all were within tolerances. It is possible that I’ve dislodged something when I’ve had a fall. Mr M explained that it could be the connection to the generator, the connection between the generator leads and the paddle leads (the distance is too great for one continuous set of leads from generator to paddle), it could be the connection to the paddle, or it could be the paddle itself has moved and/or failed. 😞 This no doubt explains why my pain has not been good in recent weeks. The first thing Mr M did was to organise a set of X-rays of the leads to see if that identifies where the problem is. However, he said an X-ray might show a definite break, but if nothing shows up that doesn’t mean there isn’t a break due to the intricacy of the leads. He went on to explain what this means in practical terms.

If the X-rays aren’t conclusive then the only way to check things is to open me up again. The worst case scenario – but seemingly most likely – is that the fault is at the paddle end, as repairing the leads or replacing the paddle is a repeat of June’s surgery whereby he would need to open my neck again and he warned me that the neck pain was likely to be even worse a second time around! 😮😒 He will see me again in January to review the X-rays and discuss the options further.

In the meantime, Jenny then set about seeing if she could get a better programme for me using the working electrodes. They are arranged in 5 columns of 4 contacts (contacts 1, 2, 15, and 16 are pairs of nodes each – my maths isn’t that bad!!). Unfortunately all of the contacts on the right have failed, so the plan of splitting the stimulation into separate left and right programmes wasn’t an option. Fortunately there is a complete column of contacts working and so Jenny started seeing if she could get enough coverage across both sides of my back with those. After much testing things out – and when I say testing out bear in mind I mean having her send increasingly large amounts of stimulation to the device to assess where I could feel it most – she got what seems to be a decent amount of coverage on the right as well as the main stimulation on the left. It was very weird feeling how, for example even relatively slight movement of my right arm could significantly increase the sensation in the left. I thought initially Jenny had accidentally increased the intensity, but then I saw it happen when her fingers were clearly not on the iPad screen.

One of the things I’ve noticed recently is that I’ve been getting tingling back in my right hand. Jenny said that she’d been talking to her colleagues about the one sided responses I’d been experiencing last time round, and it is possibly to do with over-stimulation on the “0.5” setting they had opted for. I can’t pinpoint the time exactly, but it could well be that I started getting the right hand sensations just after I changed to programme 2 a few weeks ago. That would fit with the overstimulation theory. They had therefore concluded that reducing all programmes to “0.3” level (it’s an internal calibration description apparently!) would be sensible. My existing 3 programmes have therefore been changed, and a fourth added that does a 30s burst then off for 9 minutes, so I now have that, a 30s on and 6 minutes off, 30s on and 3 minutes off, and 30s on and 90s off programmes. There is then the all new one that is focused just on the working contacts, and that is the programme I will remain on until my January appointment – unless I have problems with it.

What’s going on with my knee?

I explained to Mr M that I’ve had increasing problems with my right knee and that the physio the GP referred me to put it down to the “weird neuro things” I’ve got going on., and that there seems to be a tendency to blame anything pain related on my spinal cord issues. My balance has been really bad in recent weeks, to the point I’m almost as bad balancing on my right leg as I am on my normally much poorer left leg, and I’ve actually taken to hiring a mobility scooter for the last couple of weeks so I can still get out and about with the dog etc.

Mr M said it is quite possible that the knee problem is a consequence of my spinal cord issues – it could be posture changes in compensating for how the pain affects me etc. However, he didn’t want to make assumptions and so will refer me to an orthopaedic colleague to get it checked.

What next?

By the end of hour or so I was knackered. I got up to leave and almost fell over in front of them as I went to through the door, but got myself together, ruing the fact I’d decided to leave the scooter in the car, and toddled up the corridor. I poked my head into radiology on the way past, and since they were remarkably quiet I decided to get the X-rays done there and then.

So lots to think about over the next few weeks until I see them again. Hopefully the X-rays will show an obvious issue in the more accessible areas and that can be fixed with a relatively minor op, or I have to decide whether to go through another round of, let’s face it quite painful surgery again in the hope a repaired/replaced paddle gives more benefit.

In the meantime I am continuing to increase my hours on the phased return to work. Technically I go back to full-time next week, but I’m taking leave over the next few weeks and will only typically be working Tuesdays and Thursdays.