Ruth and I went for my outpatient follow up on Thursday. Unfortunately Mr Mundil was needed for an emergency theatre case so we weren’t able to see him, but Karen had spoken to him to find out what he is proposing, and he will arrange a call with me to discuss things directly.
She started by showing me the paddle from the impedance test she did on Monday. This is a copy of the one from December, but the new test shows that 4, 5, and 6 are now returning impedances out of range.
So we moved on to Mr Mundil’s proposed way forward. If I decide to go ahead with further surgery, then he is planning to replace the paddle as nothing will be achieved without that, but also swap the Abbott device for a Boston Scientific type. Karen explained that the various SCS manufacturers deliver stimulation in different ways, and some patients are more suited to different ones. Given that, whilst I’d had some relief but not amazing results when the paddle was functioning properly, he feels it might be opportune to try another.
Devices options
I see a lot of discussion on the SCS UK Facebook group about Nevro devices, so I asked Karen about those. I’d say probably 80% of the chat mentions Nevro, so I was curious as to why it seems so popular. Karen said it is actually the go-to device at UHS, but Mr Mundil isn’t in favour of it for my situation. She explained that Nevro have the patent for high-frequency stimulation, whereas the others use low-frequency. The concern with me is that, because the paddle is high in the neck (C2 vertebra) it is very close to the spinal cord and so the high-frequency might cause overstimulation. However she suggested I talk to Mr Mundil about it if I have a preference. I will ask, but the reason I brought it up was curiosity due to the amount of mentions of Nevro compared to the like of Abbott and Boston Scientific. I certainly don’t feel like I’m going to be doing anything other than follow his advice. 😀
And so the dilemma
The thought of going through yet another round of major surgery is really not appealing, particularly as Mr Mundil warned me in December that the post-surgical pain in my neck would be even worse than last time, and Karen has advised I will need at least 3 months recovery (bearing in mind last time’s 2-3 months became 5 months!). However the alternative is that I increase this cocktail of meds I’m on, suffer the consequences of increased brain fog and memory problems, and accept that as my way of life for the future. 😒
As I mentioned earlier, Mr Mundil will arrange a call to discuss this with me, but having had time to think it through and talk more with Ruth, I’m very much inclined to think I need to give surgery another shot. I was going to say it feels like Hobson’s Choice, but I do have a choice, so maybe Sophie’s Choice would be a more accurate description. 😒