Thought I'd update as its been a roller coaster of emotion over the last week or so.
When I got to hospital I was told I was having a tunnelled trial, where the leads for permanent implant are tunnelled in the opposite side of the lower back to where the permanent implant would be sited ( to keep the perm site free of infection)
The downside of this is it hurts like hell where the leads are but the upside is I was told permanent implant has to be done within 3 weeks if trial successful!!!!! Not what I Was expecting! So the first few days I was extremely sore in the post op areas but my underlying chronic pain scores went down significantly. I was realistic and didn't expect to be pain free and the numbers I was at was manageable after the off the scale numbers I have lived with for decades. I managed with far less medication and I was able to move around more and actually had some sleep!!! I almost hadn't remembered what that was like.
I went back on day 5 for review and was fully expecting to hear very positive news and we would be arranging surgery for permanent implant before Xmas. It was a real shock when the nurse was changing the dressings she called in the doc and that doc called in the senior doc and there was whispering going on behind me and Incouldnt see any of their faces as I was face down on a couch. Eventually the senior doc said they were really really sorry but they was a hint of redness around where the leads were exiting my back as the leads had tugged slightly and they were very concerned about infection. They couldn't take the risk of permanent implant so said I had to have everything removed asap.
With a very heavy heart I had to go back to theatre on Friday to have everything removed and of course my pain scores are now back to where they were, on top of two lots of post op pain and my neck and shoulder very very unhappy about 2 face down ops in 7 days ( Ive had two neck surgeries and have metalwork in my neck and have had a thoroscapular fusion also)
This is a set back, the permanent implant will happen when docs are happy there is no trace of infection. It's just really hard to get my head around the disappointment, tho I know I will.
Thanks everyone for all your support,
Very best wishes