Last Friday was the 9 month follow up for our St Thomas’ INPUT pain group. I went with mixed feelings. Eagerness to see friends who understand me and trepidation for who the scs had been successful for. Last May the eleven of us had such high hopes, desperate hopes. But the pain team drew no punches when it came to the success rates – 8 or 9 of us would go ahead with the trial, and it would be successful for approx 2/3 of us. I can still remember looking round the circle of grey faces etched with pain, as we all wondered who would be the lucky ones and silently praying to be among the number.
As it happens I needn’t have worried. I had an appointment first with the nurse where I admitted to a pain flare up over the last few weeks – hence inability to manage to blog on top of life – I do think that this has been related to dropping the oxy dose. Any suggestions out there for coming down from this final 12 hourly 5mg gratefully received! My sleep is disturbed again and I’m waking early in pain, so the nurse says not to push myself with the drug withdrawal and definitely not to reduce the lyrica yet. But I did get a retune!! On describing the stimulation and that it wasn’t quite covering all the pain regions now the levels are higher (inner thigh, undercarriage etc), my implant programme was changed to expand the band width of each electric pulse. Imagine the pulse as a ball…..the diameter of the ball coverage has been increased, whilst the intensity remains the same. It has really made a difference and not only am I feeling the stimulation more widely, but I am using a lower setting. Win, win. Back to the INPUT session ….
Only 3 of us turned up. Dee and Ben, you are both of course let off……one in Guys having the permanent implant and the other snowed in up in Shrewsbury. It was fantastic to see the other ladies, both whom I’ve kept in touch with, but we all would have loved to know how the others (the men!) have got on. We did meet some of the participants in week 3 of a 4 week course which was interesting. A couple of them had already had stimulators which had failed – one lady had received 2, both failed. Jean and I both felt guilty sitting there with medtronics buzzing away pretty successfully! Zena from our group decided not to go ahead with the trial for the moment and has had successful pain relief from epidurals at the Royal National at Queen Square. I have experienced some stim envy over the last fortnight as Dee has had a high frequency stimulator fitted, which means that whilst she doesn’t feel an electric pulse, she can have the device on ALL THE TIME…….this means ALL NIGHT. I’m so jealous!!
We both have similar stories, similar failed surgery and pain in the same areas. The difference is that we have different consultants – it is hard when 2 consultants in the same unit are saying different things! Who do you believe? I have been assured that I have the best device for me – apparently the rechargeable medtronic lithium devices can be reset to be used a high frequency, so it is always an option for the future. Meanwhile I continue with the drug withdrawal – brutal – and hope for a decent night’s sleep!