I just thought I'd give you an update on how things are going so far.
On 3 December, I had the leads placed and the wires situated round to the side of me. I came home the next day with a battery attached to a belt on the outside. The pain post-op was far greater than I had envisaged (the surgeon did warn me beforehand, but I didn't believe him). I have 3 operation sites on my back.
I trialled the devide over the next 5 days, writing up my pain score out of 10 for each programme I used. It wasn't complicated and I found, by the time I finished, that one particular setting seemed to work quite well.
I have not returned to work yet because I am still very sore at each site. It's either swollen, or it feels like the 'connectors' inside me are trying to work their way out. It's itchy and a little bit inflammed - so I'll keep an eye on it.
The operation took 2 hours and the placing of the electrodes was slow and meticulous (using xray imaging to guide them). I was awake throughout and should have had enough sedation to 'send me'. However, it wasn't enough, so I was fully conscious - which was no fun at all. When they made a channel across my spine to the side of me, it felt like they were doing liposuction. In fact, I mentioned this at the time and the surgeon said he was using a similar tool. It was unpleasant, but not painful.
During the 5 days trial, I did not feel the Nevro at all. Although, once implanted, I would not be able to ever have an MRI again - or stand next to those security posts at the front of big shops, it can be kept switched on during driving, flying or any other activity because there is no risk of receiving a jolt, or higher vibrations - like the Medtronic device (I was told). So that's good.
The Nevro, unfortunately, does not help with the sacro-iliac joint pain at all - which is so intrusive at the moment. It's difficult to sit down for any length of time. I still have issues with pain in my left foot (from adopting a different gait over the years to compensate for back pain), but I am currently under the 'foot man' to try and resolve this (unsuccessfully so far).
Before the Nevro trial, my pain score was averaging about 8 (for back pain) and 5 (for right sciatic pain). During the trial (as I said, one particular programme seemed to help alot), my back pain averaged between 0 - 3 and completely took the right leg pain away.
Since they have 'cut me off' my pain levels have averaged about 5 (back) and 3 (leg). The surgeon phoned me at home on Tuesday night and said that my pain levels have reduced by themselves anyway without even using the Nevro, but I had to explain that because I am not at work at the moment, I have far more opportunity to rest my back whenever I need to. It's not the real world and obviously I cannot do this once I am back to normal (whatever that is).
In fact, over the last couple of nights, my pain levels have markedly increased (waking me up several times with the usual back pain and being unable to move - it's so painful that it takes my breath away sometimes. Also, the operation site gets itchy, which drives me crazy. I am using some cream to try and calm it down.
On the whole, I was quite pleased with the trial. The surgeon said he would try and book me in for the permanent implant at the end of January and, hopefully, it will be implanted into my abdomen (I certainly have enough cushioning to accommodate it, ha).
It will not solve all of my pain issues and returning to work might not be possible in the end (not least because there's a good chance I may be made redundant at the end of March anyway). I have fought so hard to continue to work, but every time I have an operation, it seems to take me far longer to recuperate and it totally knocks me out. I see this implant as the last surgery I will have on my spine (fingers crossed).
However, I have been offered more surgery (from the hospital that did the original 2-level fusion) to remove all the hardware and/or give me bilateral S.I. joint steroid injections. But the problem here is that I've had S.I. steroid injections before and they didn't help to reduce the pain. Also, the surgeon cannot say that having these procedures would even reduce the pain in the end, so what's the point?
I had to endure eye laser surgery in August this year (they did it within 2 weeks of my first attendance, which is very quick on the NHS) - All because the optician thought the steroid injections I had over the years may have left some 'deposits' in my body, which COULD have travelled to my eyes!!!!! - I do not want to go down that route again. The problem with my eyes turned out to be "acute closed angle glaucoma" - so my advice to anyone contemplating having steroid injections is just beware that nobody really knows what the side effects are from having these steroid injections over months/years. Plus, they don't always help to ease the pain (well, they didn't in my case, but of course, everyone is different).
Hopefully, the next time I provide an update, and providing nothing untoward happens in the meantime, I will be able to confirm that the permanent implant is in situ and that everything is going really well (please G-d) - I'll keep everything crossed.
I hope everyone on Spine Health has a lovely Christmas - and that the coming new year brings us all reduced pain - whichever way we can get it!!!
You all take good care xx
2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!