SCS Update

[Curlygirl54]

Hi Everyone,

Hoping you are all managing well pain wise at the moment.

I thought I'd update on the ongoing SCS saga.

You may remember I had to have all the equipment and leads removed because

there was a slight hint of redness / infection on the skin where the leads exited. Obviously I was devastated at the time but the team at St Thomas' are amazing and they were very sensitive to just how upsetting it was to hear that. So I was sent away to heal and when it was completely healed I phoned them on Tuesday and spoke to the lovely nurse who had removed the dressings on that day and spotted the redness and called in the docs. I told her both sites had healed well and no sign of anything untoward now and was there any possibly of getting some idea when I would be going in for permanent implant. She said they would be having a team meeting the next day and would ask the doctors and give me a ring. Like everyone else I have come across at St Thomas' chronic pain team she was an absolute sweetie.

Half an hour later I had a call from her, she had grabbed the surgeon and spoken to him about me and got me listed for Tuesday 19th

So, I go in on Mon 18th, have the permanent implant surgery on 19th and hopefully home - fully bionic on 20th.

I'm excited, terrified and disbelieving all at the same time. The trial was so short I haven't got any memory of how it felt but in my head I know my pain scores were lower as I had to record them.

The usual,concerns about surgery - I have to go for swabs of my back next Tuesday to be absolutely certain no sign of anything there and there is always the fear of being cancelled the day before or on the day due to emergencies coming in.

And the obvious concern - what will it feel like having this alien thing in my buttock??!! The leads are small and I couldn't feel them during the trial but the actual spinal,cord stimulator unit sits under the skin in the buttock and has to be charged up,every night 😳

A new way of life and a life which is far more manageable and far less limited.

We can but hope, but I know you guys share with me the struggle with hope when so many surgeries and procedures over sooooooo many years ( 43 in my case ) have resulted in the extreme level of pain and lack of mobility I currently live with.

So, that's me, maybe on the threshold of some improvement, but major surgery and recovery to get through first.

Thanks everyone for the support you have given me, it means so much. I'll keep everyone posted as events unfold.

Hugs

Shirley

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[Bananas5]

Yes? Bit missing Shirleykins. What happened on Tuesday??

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[RAYJAYC]

Hi Shirley

Think there's been a bit of a 'blip' in the technology!! As Paton says, what happened Tuesday??

RAYJAYC

[Curlygirl54]

Oh , don't know what happened there - will edit

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[Sweetfa22]

All sounds positive. What's the name of your procedure and how did you get referred for it? What were your symptoms. Hope you don't mind me asking x

[Curlygirl54 in reply to Sweetfa22]

Hi Sweetfa22

I was referred to St Thomas' chronic pain unit after local pain management had exhausted everything they could try over many many years ( 43 to be exact)

The name of the procedure is spinal cord stimulation also known as neuromodulation

My symptoms and history are lengthy - listed on my profile so forgive me for got going through it here -.its hard to look at just how much I've gone through over so many years

Happy to answer any questions I can about SCS

Take care

Shirley

[Bananas5]

That's better. Now we know what happened on Tuesday!

Knowing you as I do Shirley you will meet this next challenge head on. You have a smashing family behind you, don't let them slap you on the buttock!

Be with you all the way in spirit and jelly babies.

Extra hug

P x

[Curlygirl54 in reply to Bananas5]

Thanks Pat

You make sure. You save those jelly babies for me!!

Hugs

Xx

[sharonb45]

Hi hope everything goes well for you and you get the relief you deserve. I had mine fitted in April and it's amazing.

Sharon x

[Curlygirl54]

So pleased to hear that Sharon, what type do you have? I'm having a Nevro Senna high frequency.

Thanks for the good wishes

Shirley

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[RAYJAYC]

Hi Shirley

Fantabulous news!!

Keep us updated.....

RAYJAYC

[Curlygirl54 in reply to RAYJAYC]

I will indeed

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[Curlygirl54 in reply to Curlygirl54]

RAYJAYC

I'm sorry my reply may have sounded a little short, sharp and I really wouldn't want you to get that impression.

Pain levels have been rough this weekend, just as there is a requirement to reduce opiod meds ( don't expect me explain that at the movement as I'm not fully clear on it myself but I trust the docs at St Thomas' sufficiently that I do what they request, even if I haven't got the info from them at that time. I notice they give information on a need to know basis, maybe because they don't expect our pain and meds addled brains to receive and retain it - maybe because not everyone gets to the next step and the step after that.

Whatever, I didn't give your kind response the time it deserved and for that I'm sorry.

I really appreciate your good wishes and I will inform everyone at each step - you'll all be bored to death with my up dates!

It's a really deal for me tho and for all those in what was so beautifully named 'TEAM SHIRLEY'

I have decided that what I'll do when I'm in my ( very elegant ) gown and waiting for that moment when nursery and porters come to get us, I'm going to get a really pretty piece of paper and I'm going to write all the names of the people in Team Shirley 😊

So, thank you again, I really do appreciate your time and your encouragement.

Hugs

Shirley

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[Curlygirl54]

You couldn't be referred to a better hospital in my opinion Dan - I have found every person I have come in contact with to be really compassionate.

I was referred in March or April last year, first out patient consultation in June but was given an appt with one of the team who doesn't do neuromodulation ( admin error - their only downfall) but they got me in pretty quickly with correct doc.

If they decide you are a suitable candidate for SCS the next step is an appointment with a Psychologist and a Physiotherapist ( on the same day) they will decide if you need to do the 2 week INPUT pain management programme that they run and is very highly regarded. The programme covers Mindfulness, psychological attitude to your pain ( they use Acceptance and Commitment Therapy - great book about it 'The Happiness Trap) and general pacing, gentle movement etc.

If they decide you don't need that programme and in my case they didn't it speeds things up a bit as I believe there is a waiting list for the programme. So they I had to attend what they call a 'tech day' for the folks who don't do programme ( plus partner or supporter) and they teach more about the technology, what to expect etc.

After that I got to trial surgery in early Dec - the rest you know!

I've got a fair bit of info and support from FB groups - there is one specifically for the high frequency Nevro unit which I'm having.

Wishing you all the very best with your referral - ask anything you like, am happy to help if I can

Best wishes

S

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[Pippins2]

Wishing you good luck for your surgery x

[Janethaywood]

This treatment sounds amazing 😉 🙌🙌 Good Luck Shirley #TeamShirley💕

[Curlygirl54]

Thank you for your reply Janethaywood. Also for drawing me back to a post which I have failed to update - sorry folks.

It's been a turbulent year and I am very sorry to report that I'm in a worst position than I was in the early days of SCS implant.

Long story short - I did really really well after the implant in Jan '16. The post op period was very painful and I was extraordinarily tired. By April I was feeling stronger and more and more mobile.

Had a couple of days away with my partner and walked further than I had for a very long time, was overjoyed. Then I fainted, fell awkwardly and had a further deterioration in the progressive condition I have. I and the docs believe that disc number 8 went butI can't have an MRI because I have the implant so they treated with injections and radio frequency lesioning but nothing worked. In Dec I saw the clinical lead at St Thomas' who said we had gone as far as we can go unless I have S Tim removed and have MRI then a referral for a surgical opinion. If I have the SCS removed I wouldn't get another as the NHS would regard it as a failure and wouldn't fund a new one. So I would get ferocious sciatic pain and some of the back pain back in the vain hope that some surgery would help this new back pain. No one really thinks it would help tho and I truly don't have the stomach for more major spinal surgery having had 5 already.

So, I was advised to come off all opiates as research says they make chronic pain worse and increased doses as they stop working speeds this up as well as increasing the size effects. So I did this. I can honestly say tho the quality and intensity of the pain is worse, the benefit of feeling more like me helps me to be more positive and motivated to use the more psychological approaches to deal with the pain.

I'm slowly working through the neuroplastix.com workbook (on the website ) and I highly recommend at least having a look at this. There is huge info about how the brain works when it is experiencing pain and I'm learning that the antidote to pain is pleasure. Hard concept to grasp when we feel so engulfed by pain but I'm encouraged enough to just go with the workbook and see where I can get to.

Hoping that the sunshine is easing perception of pain for all you lovely folk

Very best wishes,

Shirley

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