It’s been a while, random internet reader, mostly because nothing has happened for aaaages because of lockdown and a complete disinclination to go outside because of the pain. Over the last 18 months or so my phantom pain has just got worse and worse to the point that I’m back in bed by lunchtime some days and am never up past teatime even on a good day.
I’ve been waiting for a spinal cord stimulator for nearly 4 years now and after a false start in July (scheduled for the 9th, cancelled on the 6th) I finally got my operation done and dusted last week. I thought I’d take a bit of time to explain exactly how the op went for anyone else in a similar situation so there will be some uncomfortable details popping up here and there. As Fascinating Aida say, ‘those of a sensitive disposition, leave now’.
A spinal cord stimulator is basically a white noise generator that sits on the spinal cord (hence the name), which floods the pain receptors in the brain with constant ‘noise’ to try and reduce the amount of pain signal that is getting through from the misfiring roots from where I ripped off the arm nerves during my accident. Mine is a ‘cervical’ stimulator because your arm nerves connect to the spine at the neck – the cervical region of your spine as opposed to thoracic (chest) or lumbar (back) – just like the one in the picture below.
Usually the device (let’s abbreviate to SCS to save me some RSI) is done in two stages, a trial where the electrodes are put on the spine but the battery is taped to the outside of the body for two weeks so you can give it a whirl and see if it’s right for you before they implant it permanently. However, my pain nurse told me that they were having such good results from the trial implants that they’d decided to go straight to direct implantation and give the patient a couple of weeks to heal up before switching it on and finding the right setting.
There are different types of SCS but the one I’m getting is from a company called Nevro. The device has a veritable smorgasbord of settings from the lower end (2khz) to the higher (10khz), continual or burst modes, and I’m hoping it’ll be able to do things like switch the kettle on or (dad, look away) change the thermostat. This is the newest release from this company and I’ll be the first in Aberdeen to get one so I’m looking forward to trying it out in a couple of weeks at the great switch on. I’ve asked if I get a celebrity to come do it, my family kindly think i rate a Lisa Scott-Lee or at least that woman that was on Homes Under the Hammer but knowing my luck I’ll get one of the Krankies.
The main difference between the two khz settings as I understand it is that the lower setting causes a condition called paresthesia which everyone will know as the pins and needles sensation you get after a dead arm (ho ho) or dead leg, only the paresthesia from an SCS isn’t supposed to hurt, just mask the pain. The main issue with this is that you’re not supposed to drive with the implant switched on because the tingling of paresthesia can be distracting especially if you do a sudden movement so understandably the DVLA aren’t keen. The 10khz setting doesn’t cause the tingling so that’s the type i wanted because even though I hate driving (and as far as I’m concerned my car can get in the sea) I live in too rural an area to do without transport.
Ok, if you’re squeamish this is a good place to stop.
When it comes to operations this isn’t my first rodeo but it’s the first one I’ve ever been awake for. Yes, that’s right folks, a local anaesthetic because once the electrodes are in position they need to zap your spine and make sure they are stimulating the correct nerves. I can’t say I was thrilled at the idea but after 4 years of waiting I just wanted the bloody op over with so I figured I’d put my big girl pants on (well, figuratively but more on that later).
As you can probably guess from the picture up top the operation needs you to be laid out on your front, which was the first stumbling block for me as I can’t be on my front for 2 reasons, one physical and one mental. Firstly, for some reason any position other than flat on my back sends the phantom pain absolutely bananas (even on my uninjured side), so the prospect of 3 and a half hours on my front didn’t fill me with joy. Also, although I don’t really remember the accident, the 10 or 20 seconds I do remember are of coming round on the verge, face down, trying to push myself up and not understanding why I couldn’t (because I’d wrecked all my arm nerves). I tried really hard to think of other things but couldn’t help a few tears; fortunately the nurses were lovely and spent the whole op taking it in turns to sit and hold my hand.
The other problem I had was that I couldn’t stop shaking, partly because of the nerves and partly because it was bloody freezing in the operating theatre, made worse by the icy cold iodine that my whole back got washed with. I literally couldn’t stop shivering in my thin hospital gown which was providing zero coverage as I was bare from neck to bum – no keks allowed. The reason my backside was bare will be obvious from the diagram above because the implant battery is sewn into my right buttock. I did get to choose which bumcheek though, the NHS are nothing if not accommodating when you eventually get in.
The leads are slid up the spine in the epidural space and when they are sliding it up it felt to me like I could feel the lead jarring past each vertebra but it didn’t hurt, it was just a really uncomfortable and unpleasant sensation. The only thing that really hurt as such was the jabbing of the needle for the local anaesthetic. They were very good about telling me before doing anything new and double checking that nothing was too painful. The zapping was weird. To make sure that they are positioning the electrodes over the right nerves you get a signal passed over them, and get asked where you feel the tingling; depending on where you feel it and how much of the phantom hand the tingling covers. It’s the strangest sensation feeling the tingles being adjusted. At one point I got them in my left armpit, across my chest, in my right bicep and the back of both legs all at the same time. But the weirdest thing was when they turned off the stimulator, the only way I can describe it is feeling like water draining out of my spine. Then they make a ‘tunnel’ for the lead to reach the battery pack and sew you back up.
The op is only an overnight stay barring complications although I was offered a second night’s stay for some reason. Maybe it’s because I’d been complimentary about the food, I don’t know. My neck, back and shoulders were super stiff from being in the prone position for so long with only the lower back being seriously painful, where the ‘tunnel’ was. The morning after the op my tunnel site hurt so much and my phantom pain was being unhelpful too, so I might have had a bit of a cry. But I really wanted to go home and the good thing about operation site pain is that it responds to normal painkillers, such a novelty! By the afternoon it was bearable but I felt super washed out and went to bed.
The neck and shoulder stiffness wore off fairly quickly, it’s been a week now and my lower back still hurts but it’s better than it was. I don’t need anything more exciting than the occasional paracetamol now which is just as well as I have opiate induced hyperalgesia (opiates make my phantom pain worse because fml). I’m not to bend/twist/stretch, lift anything heavy or raise my arm over my head. I’m on light duties for 6-8 weeks and have to keep my spine straight. What that translates to in practice is a morning spent watching Police Crash Accident Aussie Highway Patrol Kiwi Cops Nothing to Declare Border Force Interceptors then going to bed after lunch because I’m wiped out.
I’ve had my wound check and all is healing nicely, my dressings changed for waterproof ones (hallelujah, shower-time) and I have my stitches out on Monday. Then just waiting for the great switch on and hoping it works.
Anyway, that’s it from me today, I’ll update further when I get wired into the mains in a few weeks.