My Spinal Cord 2

After the pre-op assessment 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 said,”You mentioned you’d be happy with a cancellation. Are you 7am tomorrow happy?”

Gulp. 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 the operating 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. 
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Before leaving I asked what I could and couldn’t do. 
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 things 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 greatly reduced*. 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. 

*This was written 6 weeks post-op and I am now 8 months. It has been quite a ride that has included re-programming, different types of stimulation, over-stimulation, pain, relief, different pains, pains that definitely are not mine and spasms.

Soon after I wrote the 1st part I had a ‘moment’ of pain resembling a stabbing shock in my mid-back. Since then I have had problems with the lead anchor site. As everything post-op can take 6 months to settle I had high hopes the healing  would happen. Sadly it has not. Some bits of me are awesome, some not so much.
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The support from Southmead Hospital, Bristol and my Nevro reps is the best I have ever had. Anywhere. It is reassuring to have them literally, ‘have my back’ and know they are on my side. 

Many people with pain will have horror stories of being disbelieved, judged, ignored or fobbed off elsewhere to someone who cares even less. How do I know this? Been there.

I am on the list to be discussed at their MDT - multidisciplinary team meeting - wonder if my ears will burn - to devise a plan to sort me. As the world is in a state of flux there is no date yet but knowing I will get help is reassuring.


The image is the Nevro implantable pulse generator that is in top of my buttock and charged daily. At the front of the picture is the lead connector that is placed in the supraspinous ligament to hold the leads in situ.

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