I am 32, have degenerative disc disease - 4 discs in my lumbar spine that are herniated/with tears in them and have been in pain for 13 years. I currently have a trial Boston Scientific SCS in place. It was inserted last Monday (11th Feb) and they tried to program it immediately after insertion, but I had a vasovagel episode so they stopped and arranged for me to go back the next morning.
Next morning, I get a call saying the guy who had started the programming had had a family emergency and was on a plane to America (I'm in Australia) so they were trying to find someone else and eventually I got to see someone at 4pm that afternoon.
They gave me two remotes and I had one program for each leg and each buttock and while I got some relief, I felt like I wanted the stim a bit higher up the buttock. I was also very uncomfortable from the surgery and was still taking codeine until Wed night.
Friday afternoon I saw yet another programmer who seemed to be struggling to achieve what I wanted, so he sent me for an x-ray and found one of the leads had migrated slightly down my spine, only about 3 contacts down on the other lead. He then re-programmed so that I only had one program on one remote which covers my buttocks and goes down into my legs but during the session, he "zapped" me 4 or 5 times and I kept feeling a lot of it in my stomach or at the same level in my ribs in the back, which seemed to be resolved while I was sitting in his chair.
Over the weekend, I have found that because I am in different positions to how I was when he programmed it, I am still getting the stim in my stomach/ribs and it feels like it's upsetting one of the surgical wounds, it's "pulsing" and is a lot stronger on my right side.
I do feel like the stim is helping - I am not waking up in the early hours with really strong pain like I normally do and I can definitely tolerate sitting for longer.
However, I am frustrated that the way I was programmed kept changing and that I have not had easy access to a rep because there is only one rep in my state (the one who has gone to America) and they had to fly the other two in and then only seemed to allow an hour or two with me so I felt under pressure and not able to ask for more sessions.
So on Tuesday they are planning to remove the trial and I guess ask if I want the full implant. I was told to make my decision based on the trial (and carry on with normal life), not on what the full implant might do for me but I'm not sure how I do that when I was told not to bend, raise my arms above shoulder level, lift anything over 2kg, exercise, vacuum, hang washing, shower etc when those are all things I do in my normal life, some of which increase my pain.
I haven't slept well, I can't seem to get comfy with the wires hanging out my back and I am very aware that my muscles are aching from lack of use! On top of all this, I am dealing with the fact that my husband has just started a new job in another state, so I'm doing this on my own which is probably adding a degree of stress.
Did anyone else feel like this through their trial? And did you go ahead with the full implant? Should I be asking for a couple of extra days and another programming session? My husband thinks that because I'm not waking up in pain and I'm able to sit a lot longer that those are big improvements and I should seriously be considering the permanent implant. I don't want to be pushed in to this but at the same time, I am out of options - I have done physical therapy for years, I stay as active as I am able to, I can't tolerate the serious pain medications, I've tried almost every "alternative" therapy out there - so I am terrified that if this isn't the answer, I'm on a downhill slide and will lose my quality of life, such as it is!!!