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.
I waited a respectable amount of time and called to ask for likely waiting time. The delightful O told me that my neurosurgeon AW sorted his own list and so was unable to update me until that had happened. I waited a bit more.
On the 2nd December I called and left a message bravely asking if there was any news and reiterated that I would be happy to take a cancellation. About an hour later O called and asked if I was 7am tomorrow happy.
It was 2pm. Mick was home in an instant and within a few hours we were on our way to spend the night in Bristol. Not at the Ramada.
After being checked in and checked over I met the surgeon AW and anaesthetist RB before going to theatre and the point of no return. In a blink of an eye I was awake and back in my medi-room.
I met the lovely A from Nevro who programmed my device and switched me on. After a short rest, meds, water, tea x2, biscuits and a sandwich I was good to go. Within 24 hours of the call from O we were driving away from the hospital all done.
It was a bit bamboozling but without time to get anxious I was happy.
Before leaving I was given instructions:
Nurse - remember no bending, twisting, stretching arms up or lifting.
Me - for how long?
Nurse - at least 6 weeks.
Me - when can I go on exercise bike and go in the pool?
Nurse - at least 6 weeks.
Me - when can I --- I listed a few things.
Nurse - at least 6 weeks.
Me - 6 weeks for everything then?
Nurse - yes, except the things that are 8. Or longer. Do not do much until you have post-op then ask again.
I had read many times about how tiring and long the healing process can be following a SCS implant so I was prepared to be a bit tired. If you have any kind of pain condition you already know how knackering life can be but this was on another level. I adopted the mentality of a dormouse and snoozed my way to healingville.
I have not had backache since I came round and my nerve pains are almost non-existent. It hasn’t quite captured all the dodginess on my left foot, ankle and lower leg but blimey this result so soon is awesome. Plus, there are bucketloads of other programmes to try and I am confident we will achieve nirvana.
Today is my 6 week anniversary and as I gently re-enter the world and slowly reduce the restrictions I might even do some work...
Written by Herself
I write as the muse takes me and here is a blend of blog posts and articles.