There is a huge break between the trial procedure and the implant surgery – the bod requiring rest between.
So just to be clear, before a permanent stimulation implant takes place, a trial is required and the duration of the trial can be days or weeks. Then the bod gets a rest before the permanent device is implanted.
What’s nerve racking about a trial is that the leads are positioned temporarily within the body (in my case the spinal cord). They are connected to the external implantable pulse generator (IPG), and you’re ‘simply’ taped up.
The IPG is belted to your waste so there is no showering during the whole period and obviously sleeping is a little tricky.
It’s called a trial to test if the stim will give relief – you need a significant amount of relief if it is to be deemed successful. The trial is also a good way to check the positioning of the leads.
My trial lasted two weeks and provided a great insight.
I tested travelling in a car, sitting without a cushion for decent amounts of time, walking more than usual and lots of other limits. However, it is tricky to test completely being all strapped up. I still noticed a great difference in pain levels and ability.
Sitting in a chair, was bliss. To leave the house without a cushion tucked under my arm, without putting it on the seat, and to sit in the car with the back of my thighs on the seat felt so good. And I didn’t get the usual visit by the monstrous delayed pain response afterwards.
I was able to lay on my back and watch TV, I read a book for a long time… Actually, I lay on my back AND read a book! That might be a single activity for some, but for me that’s usually two mountains I can’t climb at the same time (if at all!).
The trial was removed swiftly. A couple of deep breaths and out came the leads. I almost expected a rabbit or a bunch of flowers at the end of them. Ta Da!
There’s a mood slump after the trial is removed. You’re coming off a high cocktail of lower pain levels and bunches of hope.
My mind wondered, ‘will this scenario fix me?’. Dumb brain. Don’t be silly.
It was Christmas after the removal. I sweated (and slept) out the ‘festive’ season and lived in a heavy fog until the end of January.
Theo and I stayed in Melbourne the eve of the implant. Queenscliff is just too far to hike in from on a surgery morning.
So we had a nice dinner. The topic was hope. We sat outside, it was a warm night. We talked about living life, working, earning a living, owning a home, running our business and enjoying the rewards that come with being able to work.
I was pole position for theatre – exactly where one wants to be. Who wants to wait on an empty stomach in hospital!?
Dr Christelis knows me well so jokes are permitted – in fact welcome!
I wish I was a fly on the wall in theatre. How interesting is the place?!
I digress. And it’s freezing in there anyway.
By the time he told me a couple of horror surgery implant stories and asked if I was ready to get my appendix taken out, I was able to fall into the mask with a smile on my face. I do love an anaesthetic, especially as I lie face down into it.
Off I go to sleep, I’m so very happy as it’s the best sleep and my nervous system and brain love it.
I’d been waiting for this moment. I see the moment as the beginning of a solution. I hate being in transit and not knowing. I want to get on with anything I have to do, not sit in the unknown for months as I’d had been.
Sacral implant out (IPG removed from the left side) and spinal stim in (IPG implanted in the right). Four cuts, 37 stitches… staples rather and a brief guest appearance by one sizeable hematoma!
I woke to the sound of music. No, not to the movie. And no, I wasn’t delusional, I woke to music playing in recovery. Such a good idea!
I was in pain, I had a button full of pain relief at my disposal (actually it was a smidgen dose every 5 mins).
It worked until it didn’t, very soon after. Can’t have that stuff but we tried something new.
I was only sad because I broke my fabulous record of waking up out of anaesthetic usually starved and gagging for coffee with bundles of energy.
I woke instead to a different scenario. I was sleepy and sick (once), not hungry and I was falling asleep… over and over.
That was sorted pretty quickly, a welcome flush through the system to rid the medication.
Endone and Panadol got me through mostly and I was off all meds within a week. I can’t take meds for a long time, I dive fast, and my world disappears.
The New Day
Recovering now. It’s extra light duties until May and I take no risks, as Mr Stim and the bod need to bond, fall in love and form a very intimate relationship.
Do I have pain relief? Yes! But time will tell exactly what form that relief takes on.
With light duties and lots of resting naps, of course pain levels will be low, so I need to wait a while.
It’ll be a 6 month period before I can really tell you (and I!) what’s going on.
It will take one whole year until stim and I get to know each other. I’ve done this twice before, I know!
There are programs to explore, capacity to pace, and sitting to try without the aids.
I want to hop in a train and a tram, and hop off in the city without an agenda and limits.
I want to catch up with my dearest friends, some whom I’ve not seen since I left Melbourne. We’ve been living off parcels, emails and the phone, and that really hurts.
Of course I’ll keep you posted, unless I get really well in which case I won’t have time to write.
Developing PainTrain and speeding up pain management as well as reducing medical appointment costs is becoming a greater commitment to me now.
This pain world we struggle through feels like it’s stuck in a time warp to me. And, it costs patients far too much.
Worse still, professionals are time poor and really need to be able to help more people.
Every time I’ve used PainTrain with my pain specialist, I’ve felt proud of it. It’s helped me and my specialist continue the care and communication outside of appointments. It works!
1 A new health summary for my Spinal Cord Stimulation treatment
2. Adding my Spinal Cord Stimulation pain descriptions
3. Patient Journey – updating my health summaries
4. Adding my Spinal Stimulation reports
I want to change this system.
We all deserve more effective care and better communication resources – that’s actually my profession, my identity, I don’t want to be known for my chronic health issue.