When I met with Mr Mundil in October he confirmed he would chase up the referral to the pain team. He now runs some joint clinics with the pain team to help transition patients from SCS through medication reduction. On Thursday I met with Dr Ellie Hyde, a consultant in pain. The new specialist neuromodulation physiotherapist Paige, and Dovie, Clinical nurse specialist, were also there.
We spoke about how I was getting on and what the SCS was giving me. We then moved on to what was still a problem for me in terms of pain. I explained that I’d successfully reduced the Pregabalin dose through consultation with the pharmacist at the GP surgery, Tony. The limiting factor in further reduction now seems to be the neuropathy in my right foot. This gets particularly bad when my leg is raised. At night, it is almost unbearable if my foot touches the mattress. It also becomes unbearable if the duvet rests near my heel or the outer edge of my foot. I also get a sensation that something is rubbing on raw skin across the base of my big toe. Our conversation therefore focused on this.
Topical treatment
Dr Hyde asked if I’d tried anything topical for my foot, and suggested Lidocaine might be a possibility. I explained that I’d used Lidocaine for my back and neck post-surgery. I also use the patches when I have a particularly bad flare-up. Applying the patch might prove tricky on my foot because it is 14cm x 10cm. However, cutting it and applying in pieces could work. I’d have to be non-load bearing as much as possible to avoid displacing it. The time I’d need it most would be evening and night, so that shouldn’t be a problem. I mentioned the potential problem with having Lidocaine when we go to Zambia as it is on the banned drug list. More on that in a mo.
There is an alternative, which might prove easier to apply to the foot anyway. That is Capsaicin, a substance found in chilli peppers. It works by deadening the nerve endings for a period of time. Evidently, it can sting quite a bit when it is applied. Then the deadening effect will negate that sting. It will also ease the underlying neuropathic pain. I will talk to pharmacist Tony about getting some prescribed to try that out.
Another option, particularly if Capsaicin works, is to have Qutenza patches applied. These are super-strength Capsaicin patches. As such they are only applied in hospital. Some people have quite severe reactions to them and so you need to be closely monitored during the application. If they are suitable for me though, they are known to work for several weeks and even months. I would then request a further application via the Patient Initiated Follow-up process.
Other possible medication changes
We also discussed possible changes to my current medication. If any of the above topical treatments work then I can start to try reducing the Pregabalin dose further. Dr Hyde also asked if I’d tried Amitriptyline. I explained that I had been put on that originally. However, it had started to become ineffective. This was despite being on the highest dose prescribed for neuropathy. That was long before the SCS. I was changed to Gabapentin, then Pregabalin, because of loss of effectiveness. It was not because of any sort of reaction. It might therefore be worth considering trying Amitriptyline again. Clearly, we don’t want to make too many changes at once. The topical treatments will be the first change for my foot.
The other medication we discussed was Duloxetine. I found this to make a reasonable difference prior to the SCS. However, I do suffer an annoying side-effect from it in that it impairs sexual function. When I speak to Tony we will discuss starting to reduce the Duloxetine dose and see how I get on.
Early feedback on Lidocaine
I’ve had a Lidocaine patch on my foot for the last two nights (I forgot the first night!). Initial signs are that it works well. The first night I put the patch around from the outside edge of the foot and under the arch. This seemed to deal well with the pain in the outside edge and also in my heal. I did still get the burning sensation across my toes though. Last night I cut a strip off the patch and put that across the base of my toes. The rest I put under my foot as before. The relief was pretty amazing. I was far more comfortable with my legs raised on the recliner in the lounge. This is where I really tend to get the toe pain. I had another good nights sleep as well. It’s early days of course, but a positive start.
Travelling to Zambia with Lidocaine
As I said earlier, Lidocaine is on the banned drug list according to the Zambia Tourism website. Paige asked whether it is banned in terms of not being prescribed, or illegal to possess. When I got home I did some more digging. Fortunately one of Ruth’s brothers is good friends with a doctor. He in turn reached out to a specialist colleague for me, and she contacted the drug regulators. The good news is that they have said it will be fine for me to take Lidocaine. I just need a covering letter from the consultant here. It should say what I am taking and why. Additionally, they need to provide a signed prescription. Both Mr Mundil and Dr Hyde had already agreed to provide whatever information I need.
Other avenues to pursue
The final area we discussed was physiotherapy. I explained that, following my previous surgery I had received physiotherapy and hydrotherapy. I had neither after last summers surgery. I had a couple of visits from the emergency discharge team. They wanted to make sure I wasn’t falling. Balance had been a major issue in hospital. I accept that my mobility isn’t going to improve, and in fact is likely to continue to decline. That doesn’t mean I give up, and I want to do what I can to stay reasonably fit. I’m being quite successful in losing weight, and would like to do something to maintain my general fitness. I want to do that in a controlled way though.
I also mentioned that, having significantly reduced the brain fog, I intend to do some part-time consultancy. Paige asked if I’d received any assistance with returning to work. Once again, I had no idea that was something that was available. Paige is therefore going to refer me to the community Neuro rehab team. They will be able to provide specialist advice both in terms of physio and occupational therapy.
In conclusion
My main take away from the appointment was not really something new. It did serve to re-enforce what an amazing service I am being supported by. As a long-term NHS employee I am always really conscious of how pressured the NHS is. I continue to think there are people who need help more than I do. I am though constantly reminded that I do also need and deserve that help. I didn’t feel rushed through the appointment. I spent about 50 minutes there, I think. I was offered a follow-up if I felt it would help. I’ve always been able to email the neuromodulation team and get responses when I need them. I therefore said I was very happy with the plan. I would contact them if I felt a further appointment would help.