My Spinal Cord Stimulator Experience

The Trial

​All systems go for the Spinal Cord Stimulator (SCS) trial and I visited Senior Nurse N for pre-assessment and a thorough step by step explanation of how the trial is inserted. With drawings. We talked about restrictions; no deep bending, twisting, lifting or stretching arms up. I asked about toilet related things and she did a beautiful visual demonstration accompanied by - move slowly like a ballerina. Her words are stuck in my mind.

The other restriction is no showering or bathing that might risk the procedure site getting wet. I knew I would not manage a week or more without washing my hair so Mick devised a way to wash it with me sitting backwards at the kitchen sink. 

Remember remember the 5th of November was my day. 
We stayed at the Ramada and it was one of those times when it felt like we were in a hidden camera programme. Within a few minutes of being in the room the electricity went off. Wires were hanging from a lamp and we were told that having the kettle and a light on was too much. We moved room and it happened again but that time once the trip was reset it stayed on. 

Dinner was chaotic with no fish for the guests who fancied a lump with chips and no cold beer. There were many sad looking people sitting alone with their bottles of warm booze. The same staff look after reception, the bar, waited and helped in the kitchen. It is a ridiculous system.

Because we live a long way from the hospital I had to stay nearby on procedure day/night so yippee I had a 2nd night to look forward to.
On the day I was duly admitted, sexy TED socks on and off to theatre. The trial is performed with local anaesthetic and I sat waiting while everyone adopted their positions. There were 8 or 9 staff members; all female. I have never known this happen before. It was like watching a dance and because one is usually unconscious by that time and none of it is seen. In the past having injections I was always on my tummy and the unseen work that happens is mind-boggling. Seeing, hearing and being introduced to who does what is reassuring and calming.

The moment came for me to clamber onto the table with a wedge under me and my face in a hole. Imagine a massage without any of the pleasure or relaxation. First off were 2 lots of antibiotics slowly injected into the cannula in the back of my hand by N. It was wonderful having her in theatre by my head talking to me through the whole thing, explaining what was happening, stroking me and even being ready with an ice pack for the back of my neck when I began to cook. She knew that would happen. This was not her first time.

I was then painted and completely draped (hence cooking) apart from the window on my back and LJ set to work.
My anatomy, yet again, proved challenging and LJ had quite a job to get the trial lead in place but she persevered and won the day. 

Back in my medi-room my rep, S, from Nevro questioned me about the issues I had and programmed the stimulator. The pulse generator was taped to my back attached to the lead that exited my back; held in by a stitch, and the charger unit was held around me with a velcro strap. I expected it to become annoying but I quickly got used to it. I had a remote control to change the programmes. 

After about an hour I left to return to the hotel. It was all a bit better the 2nd night - expect because of the meds but sleep did not come and Mick made tea. Everything was sore but within a few hours I could move my left foot like a regular foot and when the local wore off I realised I had no backache. What?! Yes. No backache.

Back home the nerve pains began to reduce. It was magical, exciting and weird. From having so much debilitating pain to not is, well, strange.
I was scheduled to have the trial removed on the 18th but after about 5 days the hole where the stitch was became sore. I returned to Southmead on the 13th to have it removed because it seems I heal like Wolverine and my body was trying to close the hole and engulf the stitch. I was sad to no longer have the relief but the general consensus was 80+% relief meant I was ideal for a permanent SCS implant to be fitted.
Within a few hours the nerve pains returned and by the next day so had backache and spasms. My toes were all over the place and I was a grump.

One week later I was back for the permanent pre-op assessment. This is when all your bits and bobs get checked, bloods get drawn and I had a thorough discussion with A. At one point he asked to look down my throat and made notes. He had encouraged questions so I asked what he was doing and what he had just written. He replied, 'I want to know the size of your throat to determine the ease or difficulty of putting in a tube if we need to intubate you. Yours is excellent.' I felt momentarily sick and told him to not let me ask any more questions but I was secretly pleased I had got, which I have always suspected, a big mouth.
I was cleared for surgery so now was time to wait. 

Before the trial I researched how people manage and joined a couple of facebook groups. Following suggestions and tips I bought: V pillows, grabbers, wash scrunchie on a stick and dry shampoo (to last an extra day) (it did not happen). I tried a wash cap - you put it on your head, massage and da da - slime.

Time to wait now.

Part 2 
Through here

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