Help!

All you parents out there must remember those months of anticipation and preparation for the new arrival.  Reading all those books and magazines in an attempt to have all the inside knowledge possible and so be ready, not to be caught on the hop by any surprises.  You’re told that there will be help from professionals every step of the way…..yet nothing quite prepares you.

So it can be undergoing a life changing medical procedure.  The time spent preparing and anticipating can be months – months just on a waiting list before you’re even seen and assessed.  When I was first seen after referral, it was made very clear that this was not just an in and out procedure, but rather a whole process.  The outcome of the surgical procedure was more likely to be successful if combined with other elements – both physical and psychological preparation.  But all those months of preparation and reading, talking and scouring online sites & forums can never truly prepare you for the final outcome.  A very different outcome to a newborn, but nonetheless a huge shift physically and mentally.

No one can anticipate what a spinal cord stimulator will feel like for one person, whether it is a low frequency emitting a parasthesia or tingling sensation, or a high frequency which gives no indication that it is working – other than the pain ceases when it is switched on.  There can almost be a feeling of anticlimax after so much eager anticipation, but also loneliness and isolation.  When I was on the inpatient programme, one of the others described us a being in the “Input bubble” – a safe place, away from the real world and our normal lives. I remember giving discharge talks to patients and going through a check list, but once you get home that little chat can feel woefully inadequate.  My discharge letter contains very little information, and over the last couple of days I suddenly felt quite uncertain – when should my dressings be changed, who should remove my stitches, what did they say about recharging? aghhh…….I don’t know!  Did the consultant tell me in recovery to go to my GP in 10 days, or did I dream that?  Will I receive an outpatient appointment at a days notice, like last week?

Even though the ex nurse knows these answers, I suddenly haven’t been sure and have felt quite isolated.  I did call the hospital and leave a message for the CNS, but whilst waiting I felt a need to do something myself.  I contacted friends – pain buddies who have been here.  One had an implant several weeks ago, the others I contacted via a specialist forum – and there is just fantastic support out there.  Of course I knew that the dressings needed to be changed!  I just needed it to be confirmed.  Nurse Duncan to the rescue as I talked him through aseptic(sterile) technique and checking the sites.  I have 2 incisions approx 2 inches in length – one on my right bum cheek, the other on my backbone;  I swear that if another surgeon goes near my scar, it will extend from my coccyx to my bra strap!  The small wound to my left hip which had carried the cable to the trial battery has healed to the size of a small cigarette burn!  Stitches come out Monday at my GP surgery, and my outpatient appointment arrived for next Friday.

4.45pm the phone rang.  You guessed it!  It was finally the CNS returning my call……but I had already answered my questions.  For now at least.

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