Dealing with chronic pain
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Spinal Cord Stimulation Which one is best?

geemccgeemcc Member Posts: 10 Connected
I'm planning to have a SCS in the coming months and the clinic mentioned it could be one of a few different manufacturers.

Had anyone had a SCS implanted? 
What make do you have?
What had been your experience?

Thanks all

Graeme

Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @geemcc, how are you doing?
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  • geemccgeemcc Member Posts: 10 Connected
    Hi @Chloe_Scope

    I had a nevro SCS implanted 2 weeks ago and it seems like it is life changing.

    My pain levels have dropped by about 70 or 80% however it's early days and I'm still in strong meds (Tapentadol and Pregabalin) so when I'm off those I'll know the real result.

    The main pain is wound pain but as that has eased off over the last 2 weeks I'm left with a fraction of the pain I normally feel.

    For 10 years I've struggled to sit down for over 30 mins without pain but at the weekend I sat playing my ukulele in the park for 3 hrs with very little pain afterwards. I can't explain it, it's just gone.

    Trying hard not to get ahead of myself but so far so good.

    If anyone has any questions about it feel free to ask. 

    Thanks

    G
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @geemcc, I'm so happy to hear it has made such a difference! It cannot imagine how much a difference this will make. Thank you for sharing this with us.
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  • sara05sara05 Member Posts: 6 Listener
    hi @geemcc

    i saw your last post from April 2020, I have recently been put on the waiting list for scs and your post was exactly what I have been wanting to ask! 
    I have been told due to covid it’s unlikely to be this year or next 🥺 
    I now have permanent nerve damage at L5/4 and the pain I get is sometimes unbearable. 
    I was a fit and healthy mum of 2 training for half marathons, went to see a physio who left me with chronic pain and a shattered disc. I had decompression surgery, which released the nerve and introduced me to nerve pain down my leg so I had revision surgery that exacerbated the pain ☹️ after getting a second opinion before having the fusion surgery I was told I needed, I am left as a 40 year old in constant pain and feel like my life has been put on hold 😔
    i would be interested to hear how the lead up to the actual surgery was and if it was as daunting as it sounds?! 
    I am a health care assistant at a hospital but I just can’t see myself being able to work much longer with this pain 😬
    Any experience you can share would be great to hear. Hope you are doing well now 😊
  • geemccgeemcc Member Posts: 10 Connected
    Hey @sara05 thanks for the message.
    I've had the surgery now back in June (was super lucky timing) they skipped the trial and went straight to implant and I can say it has changed my life.

    In 6 months I have reduced a lot of my meds, sleep is better and mental health is better. 

    The biggest change is my energy. I forgot how exhausting pain can be but suddenly awake and more alert. 

    There is still a long way to go, charging every night is a bit of a pain (excuse the pun) but overall my pain has reduced from 8/10 to average of 2-3/10.

    Please get in touch, happy to talk to you about it, I know how terrifying it is!

    Good luck
    G
  • sara05sara05 Member Posts: 6 Listener
    Hi, 

    oh wow they sounds fantastic!! I can only imagine how much it’s changed your life. 
    I’m quite scared about it as it sounds far more major than when it was first mentioned to me in a passing comment. My manager even asked if I’d be able to work the day after as they think, because I’m still working (park time) that my pain is like a mild headache, but they don’t see me sobbing in the toilets trying to get my act together 😬🥺 
    Im also quite worried about them saying no at any point in the appts prior to surgery. 
    How do you charge it? Can you feel the device? 
    Thank you so much for replying and sharing your experience! I really appreciate it! It’s all so overwhelming and because no one can ‘see’ what’s wrong, it’s hard to explain what it’s like living with chronic pain (I also realise I’m probably being a total wimp compared to what others are going through 😢)! 

    Take care
    Sara 
  • geemccgeemcc Member Posts: 10 Connected
    Hi Sara

    I know the feeling with work, im currently going through a tribunal for a company who let me go due to my disability.

    With my device you don't feel it but some have a small tingle. I've had a few times when I've felt a sharp pain at the start but that lasted a few seconds and I've not felt it for months now.

    Yes it's scary but it's nothing like my other surgeries (microdiscectomy and 3x fusion). I went in at 10 and was out by 6pm. The first few weeks are hard and you really cannot lift anything heavier than a kettle for 6-12 weeks or the wires could move but after that it seems fine.

    The benefit is that if it doesn't work they can take it out and you go back to where you are.

    Re the device itself, you charge with a little rubber charging pad. It takes longer than I thought (30-40mins a night) but it's light and can be strapped to you using the holder they will include. Takes a bit of getting used to as it can be a bit sensitive regarding placement of the charging pad but after a few weeks it's just second nature.

    The device is quite big under the skin but again it just becomes normal. You can feel it and it sticks out a bit above my hip but I sleep in my side and after 12 weeks I couldn't feel it at all.

    I was petrified having had failed surgeries in the past but it was much better and it worked quicker than even I expected.

    I'm just about to move to aus so my first long haul flight which will be interesting as I've not gone through security etc before.

    Good luck and don't let work get you down...I know how easy that is when people don't understand.

    G
  • sara05sara05 Member Posts: 6 Listener
    Sorry you’re having to go through a tribunal, that’s tough on top of constant pain. 

    Your descriptions are great and have given me more of an idea what to expect 🙂 

    Hope all goes well with your move and the security checks 😄 

    if you happen to think if any do’s or dont’s, feel free to send them my way 😄

    all the best

  • geemccgeemcc Member Posts: 10 Connected
    So here is what I wish someone had said to me

    1. The op itself isn't big but be prepared for the limitations afterwards. The first 6-12 weeks are crucial for the scar tissue to heal but after that you are good to go.

    NHS will scare you about leads moving but really its just until they are bonded.

    2. Don't rush of the meds, the pain will go up an down for a while until you get on the correct programme. Even then it take time for the surgical pain to go away.

    3. Get a hobby that's not TV (I picked up the ukulele). Walk when you can and if/when lockdown ends, get in a swimming pool!

    4. Don't panic when you get pains afterwards. I panicked a couple of times when I got shooting pains and just assumed the leads had moved. Within 24hr they were gone. Basically you WILL know if your leads move.

    5. It gets better. There is light at the end of the tunnel. 

    Stay in touch and any questions just ping them over
  • Tori_ScopeTori_Scope Posts: 4,010

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    Thanks for the update @geemcc, and for sharing your experiences :) 
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  • sara05sara05 Member Posts: 6 Listener
    I’ve got my information appointment with the clinical nurse specialist on Monday 😬😬 I’m so nervous/excited/overwhelmed about it!!! 
  • Sandy_123Sandy_123 Member Posts: 1,064 Pioneering
    @geemcc ooo this sounds interesting. I will have to Google it. Being that much pain free would be great, not sure if I'm suitable for this but will research it. As well as being in a lot less pain are you able to be more flexible?
  • Sandy_123Sandy_123 Member Posts: 1,064 Pioneering
    I've just done some research and I'm amazed by it. It's great that research was put into trials. I've been in pain all day, even now I'm resting, I kind of found a way to just live with it. Been like it for a long time, so I'm very intrested to see how you get on with this.
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