Quite apart from all the bladder bits grumbling away in the back ground, there has been the spinal nightmare.

It seems according to Mr T, spinal surgeon , Mr-Economy-of-words, bladder, kidney etc infections = degeneration of spine. Obviously.

Spinal fusion and spinal spacer were sort of helping, but got to chronic stage three years ago. I refused another fusion. I wrote to appeal to my CCG for referral to London. Cutting a long story short. I got there in the end. I survived the Pain Management Programme and even started a site for we six patients. It’s called ‘Under my skin’

So, I am finally and proudly a patient at big Teaching Hospital London Neurology Department.

When I had my consultation with, let’s call this Doctor The Baron, he told me he wanted to

a) fit a device called a Nevro. HF10. I think. This, he said, has just been licensed. It has high frequency and does not cause the parasthesia ( needle sensation).

b)he would do a trial ‘on the table‘ and full implant ,in one single procedure.

c)The Nevro is particularly suited to leg and back pain together ie for me a good thing.

The Pain Team and pre-admission clinic staff, all told me that there would be a two week trial. The ‘paperwork’ was promised but never arrived. They also explained that whichever, Consultant I was to be under, was also in doubt.

With some trepidation I made my way as instructed, to the hospital for 8 am on Monday 10. Dear daughter L offered to come too. Usual domestics completed food, dogs, milk and full freezer.  We giggled our way to London. No seats. I sat on the luggage rack. L on the floor. swapping commuter stories with our new found friends as we jiggled and giggled to London.

Checked into the hospital. Worked out which building which ward…thank goodness for without L I would have ended up in the paediatric department.

  A flurry of activity  and nurse rushed in, did her admission sheet. Boarding wrist band. Surrendered all liquids. Baggage checked and labelled ( yes). I am instructed to get into ‘gaping-gown’ before surgeon arrives.

As if! I had been told by the Pain Team that he only does Monday afternoons so NOT Monday mornings

Anesthetist ( Registrar) sped in. Turned out he’s from our home town, trained at our hospital.’Bad luck’ I said as we ran through..asthma?check  allergy?check meds?check. Towny Boy said I would be ‘going down’ soon.

Years of experience …I knew I would not be going ANYWHERE soon. He also had a nice line in jokes. Right kidney Removed is one.  Well RR seemed funny at the time. Then the Left is Left. ‘LL’ oh never mind…

 So I read my paper, read my book, practiced my bridge app…couldn’t help but overhear as my neighbour-separated-by-a-mere curtain told her sad story and yelled down her phone. Listened while she insisted on a smoke while the theatre porter waited……..and eventually off she went down….., ‘down‘.

Still I waited and did crossword, stood stretched lay down sat…watched Downton on my iPad….and before I knew it, its the afternoon…and skinny Geeky looking boy, aha the oh so lovely anesthetist ( another one…more senior..but no name no rank). Geeky went through the whole asthma?check  allergy?check meds?check, again.

Immediately followed by none other than the great man himself. Phew. For it is indeed the Baron. He kindly and clearly explained the plan. ‘Trial on the table and then implant straight away, if successful’. I dared not ask what would happen if not. He wielded big board pen and marked up my back.I signed the indecipherable consent.

He politely congratulated me on still wearing my ‘pants’…so good for marking the comfortable spot for battery pack. I could not possibly explain my aversion to the paper variety usually supplied. They go missing, the moment the sniff of gas appears. Let alone the potential for spontaneous voiding oooooh now that would cause trouble.

‘So’ he said ‘we are all ready to go down’…however, much to his disgust, the Houseman had not done the clerking. Whatever the hell that meant I have no idea. My brain still in Downton mode I worried that Earl of Grantham needed his shoes cleaned. But clearly the harrumphing from Baron Grantham at the nursemaids desk, had the desired effect. A young Anna lookalike ( God I must be getting old) nervously approached.  Apparently she was the House Officer. None the wiser I  went through asthma? check.  allergy? check. meds? check. Anna then asked if I’d had any previous operations.  Pah…as if! So tempted to say no..I handed her all my own papers…’look’ I said, ‘how about you take all these and write it up at your leisure’. Her look of relief = I said the right thing…off she nipped dropping papers as she flew.

Oh well. Then tah dah…nurse Pattmore or Daisy was it? arrived. ‘Quick’ she said ”we better go the Earl and Baron are waiting’….racing through the darkened ward ( siesta time~lights low!) clutching gaping-gown…we caught a lift.

Nipped along to theatre.

Tsk, Thomas-type manager there, sent us packing…wrong theatre!  Frrriggiggty…back to the lift…giggling. I said ‘oh well lets go for a coffee then’. …Daisy grabbed me (and gaping-gown)…before I could imbibe and we disemboweled

( well, nearly) into the basement. The dark nether regions of the great building. Downstairs to the upstairs and we nervously knocked on various gloomy pewk green doors. At last we found Earl Baron.  He was not impressed. I ended up apologising for being late. Dunno why. what the hell.

So Towny Boy started off the canula bits closely watched by Geeky Boy. The Baron solicitous,  position of pillows, legs, gaping-gown…the lot. See? keep your pants on patients. Its important.

I’m fascinated by the sheer number of people in the theatre. They all had a role. They all seemed  totally calm, totally in control. Totally wonderfully caring too. Equipment everywhere. Lights from all angles. I’d love to know what its all for.One day one day I’d love to have a tour an explanation of just what on earth goes on. A fascinating process, if only it was not me ( and gaping-gown).

Towny Boy asked me who did my original operation at the start of all this…I ducked the question. Geeky Boy rammed oxygen up my nose.

So off we went I really don’t remember a lot. The Baron was chatting away if memory serves me right, he mentioned gin and tonic, or was that the butler?…bleurgh. The rep Lady Mary, I called her, from Nevro zoomed into my vision with a laptop. Asked me to tell her if I felt anything. She fiddled and twiddled and no I felt nothing. Tried again NO. eek I was tempted to just say YES, but one more fiddle and twiddle and bloody hell a jolt of sort of electric tingled up my leg. The Right Leg RL…phew…she turned it up a bit and eureka… the Whole Right Leg WRL. Oh my days it really was working. Yes yes yes. WE made it.

Wake up briefly in Recovery to violent pewking. Dearest GeekyBoy zoomed in worriedly finding potions to plunge in fast. Descended back to glorious  once more.

woke up on the ward…found it was  7.00pm  and dear ole L was already there, waiting for me Pret coffee YES. D arrived as did G all clutching wine gums and fruit gums… Don’t remember much more that night. Lovely nurses checking and watching and checking. Other patients all seemed wonderful. One of them, I later called Lady Edith. She, I recalled had bounced awake in the bay opposite me in Recovery. My recollection is that she sipped tea ‘downthere’ with a massive bandage round her head as if not a care in the world. \Amazing lady as I later found out. She sprinted off to shower and loo clutching her brain drain bottle…literally from her head.

She came over for a chat and we discussed the label the doctors had stuck on her head bandage. It said ‘flap open’ . ‘Its the brain’ she said. ‘Infection after surgery. Got to drain.’ Of course. Her husband was under instructions to bring yogurt and fruit for breakfast. clearly a seasoned patient. Her son brought lunch, a Pret salad. Supper something a little bit nice from Pret was brought in by husband. Nice North London family. We chatted away. Another lady had clearly been there ages, her family came to visit and patiently tried to chat. Nurses sat with her encouraging food. Another, had two small sons who pleaded with her to get better, why are you here?why are you ill? why can’t you come home? poor boys. i gave them my wine gums.  Daughters of an older lady opposite me scurried in with washing, and fruit parcels and jolly drinks.  Wow what amazing strong families these are. 

As for all the nurses…nothing phased them. Under the rule of the Countess the ward ran smoothly. No querying of drugs, catheters, opiates, allergies…as I have grown used to ( all those forms before the op!)… They just so ‘got it’. Bloomin brilliant.

Oh, finally, what happened? ‘on the table’?…Well, the Baron
inserted wires into my spine. In the epidural space going up my spine. Then those wires are tunneled to my left hip ( below the pants line!) to a battery which is in a fat-pocket or rather pocket of fat, inside. So a line of staples to close that bit. Two lines of staples over my spine for the wire bit. Those are sore. No driving. no lifting. no twisting. no swimming. no shower…6 weeks.

A lesson from Lady Mary Rep and Pain Team Nurse Wine, who came to my bedside, spent ages with me, fabulous. They showed me how to charge the battery. Every night like a Tesla car I must charge up for an hour!

Showed me how to change the programme to see what the best permutation might be. There are three points of contact. Seven frequencies, so 21 to try. Wonder if I can in fact try more than one programme. Would that be 21 cubed ?…hang on I better think out my maths…I’ll do that. So Nurse Wine wrote my schedule of changes for me. Gave me my appointment dates. Explained everything. Left phone numbers. Explained what could go wrong and what to do if it did.  Nice that. Just so clear. So confident. So reassuring. At last I am in the hands of a whole team who know what the hell is going on.  they loved the ‘Under my skin’ site. Would like us to demo it at our next group meeting.

 To say I am delighted is an understatement…oh and guess what after the initial ‘wash down’ the stimulator seems to have switched off the pain in my leg.  That is utterly stupendous. I cannot tell you how much that means to me its like a huge furrowed brow has been erased.

Thank you one and all. I know this is only the start. We were warned it is a long process and now we are ‘wedded’ we are told, to the hospital for life. They will check us ,challenge us, and calm us. Wow.  I really have got that implant under my skin. whooo.

The implant info can be found here:

NEVRO

Its only just licensed for use. Up to now patients have used an SCS stimulator a bit like my bladder SNS. ie the frequency can be felt. Most seem to have to have a two week trial before full implant. Some end up having an op for start of trial. an op for end of trial. then 6 weeks later another op for full implant. Not me. Thanks to the Baron. I….thank him so very much.