Please help - has anyone had a spinal cord stimulator? — Scope | Disability forum
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Please help - has anyone had a spinal cord stimulator?

geemcc
geemcc Member Posts: 10 Connected
Hi All

I'm Graeme, I'm 33, from Scotland but live in London and have been living with chronic back pain for the last 10 years.

I'm currently on the waiting list for a spinal cord stimulator but I've not met anyone who has had the procedure so can't ask those lifestyle questions to see how this could impact me longer term.

The big questions I have are:
1. is there any way I will be able to get back to playing squash/golf after the surgery
2. has anyone experienced complications and what did that involve?
3. We are expecting our first child in October, does the SCS have any impact on how you are able to interact with kids i.e. lots of bending and lifting?
4. If Covid-19 eases up I may have my procedure around the time our child is expected - how much care/assistance was needed post op?

If there is anyone who has had a SCS or knows about living with one please could you get in touch?

Many thanks in advance

Graeme

Comments

  • geemcc
    geemcc Member Posts: 10 Connected
    As a it of background, I was assaulted in 2010. I went through he usual physio, chiropractor etc. etc. but in the end my L5/S1 disc had ruptured.

    I initially had a microdiscectomy in 2011 which worked for about 6 months then it went downhill fast. It was advised in 2012 that I go for an anterior lumbar fusion with a wallis implant. Again this seemed to be working for about 6 months then things got gradually worse. When I went for a check up it appeared that there hadn't been a solid fusion and it didn't look like there would be.

    Eventually in 2014 I had a couple of second opinions and agreed to undergo a further 360 Lumbar fusion at The London Bridge Hospital which thankfully worked.

    Over the following years my pain reduced gradually and I was able to get back to work, squash etc.

    Then...in 2016 I bent down to pick up my laptop bag and felt that pop...L4/L5 had gone. I went through a number of terrible appointments but eventually managed to get the same consultant who did my last fusion who said the best option is to do a further fusion at L4/L5 which took place in March 2017.

    Since then I have been on strong opioids and my pain has not improved. The next recommended step was to get a spinal cord stimulator.

    The things I've read seem like the SCS is a great option but it's a big decision and I need to be sure it will be right for me.

    Since 2017 I've also lost my job as I'm unable to work full time and I'm trying to get ESA and PIP but Covid has put a bit of a delay on that for some reason. 

    On a happier note, as I noted above, I'm expecting my first child in October but this brings with it some serious challenges for someone with chronic back pain.

    Could the SCS be the dream solution or is it too good to be true?
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @geemcc    Pleased to meet you.

    Thank you for joining and sharing.

    Please if I could suggest speaking to this organisation.

    Everything to do with spines back problems.

    https://www.spinal.co.uk

    Helpline 0800 980 501

    Please get in touch may be answer any questions you have.

    Please if I can help further please get in touch.

    Please take care and keep safe.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • geemcc
    geemcc Member Posts: 10 Connected
    Thanks @thespiceman

    Looks like a great resource
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @geemcc - Welcome to the community & thank you for joining. I'm not sure if we have any members who have a SCS, or, are like yourself contemplating one. Unfortunately as we're not medically qualified we can't advise.
    The best person to discuss the pros & cons about this with are the consultant who recommended this.
    I have looked online however, & one London hospital mentioned a trial of this before a permanent implant is considered. See: https://www.guysandstthomas.nhs.uk/resources/patient-information/perioperative/pain/spinal-cord-stimulation.pdf    will you have this first, as it might give you an idea as to whether it would benefit you?
    There's also this facebook page, but this will be people's personal experience, not medical advice.
    Congratulations about your expected first baby. Now that will certainly change your life! :)
    Please keep in touch, & let us know how you get on.


  • geemcc
    geemcc Member Posts: 10 Connected
    Thanks @chiarieds . I'm aware of these resources and you are correct the consultant is the best for most questions however I'm looking for something a little different.

    I'm trying to speak directly to someone who has lived with it to get some true answers rather than just stats and risk warnings. 

    I'm under Bart's who have a fantastic pain team but most patients who have had it are in their 50s and 60s so likely have different requirements and lifestyles.

    Thanks for your help though

    G
  • geemcc
    geemcc Member Posts: 10 Connected
    Also yes I will have the trial and this will be the main test of whether it works.

    Funnily I'm not actually worries about that part... It's strange but I'm optimistic the desired pain relief will be possible but at what long term cost.

    Finally thanks for the congrats. I'm so excited and will keep in touch
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    @geemc - I understand that you hope to get 'some true answers' Graeme. However, you appreciate SCS is often an option usually in an older age group of patients than yourself. Pleased you will have a trial, & hope it's successful.
    On a different note, many Drs, but unfortunately not all, are realizing that long-term use of opiods is unhelpful; rather ways of managing chronic pain. Please see a helpful link posted by one of our members (@EmmaB) about this.
    On a personal note, I can only endorse this, as 4 years ago I gradually came off the Fentanyl patches my last GP had prescribed for my chronic pain for the previous 7 years. Did I feel worse? No. My current GP agrees that long-term use of opiods is unhelpful.
    There are so many different ways of coping with chronic pain, &, whilst you might feel this isn't an option, perhaps it's worth exploring.
    As well as using exercise, including breathing exercises which help relax & combat pain, I mainly use distraction, visualisations, & mindfuness. It's just a matter of finding what works, which might be a combination of things.
    The other thing that has helped me has been cannabidiol (CBD). The one I take has an additional component that can be helpful with pain. Should you wish to know more about CBD please let me know.
    You've obviously researched well, & my apologies for mentioning resources you'd already found, I just wish the best for you, so mentioning other avenues to also explore.

  • StephiC
    StephiC Member Posts: 1 Listener
    Hi Graeme

    I don't know if you're still considering this (or whether you went for it) but I can comment on my experience, having had one implanted in 2017 at 27 following a nasty accident and multiple ops. 

    I've found it's helped me a lot but it's definitely not a "miracle cure". It helps things to become more manageable for me, as does the other education you have to go through before they will implant it i.e. pain management psychology. I think a change of mindset on pain is really important to combine with it, as often I think we're conditioned that if you have pain, you pop a pill or have an operation and everything goes back to "normal". The programmes they run give you another way of thinking and other coping mechanisms (and they're compulsory for that reason), so it seems to be a multi-dimensional approach which I found helpful. I decided to have it implanted as I'd hit the end of the road with all other options from a medical perspective and needed to be pretty sharp mentally for my job, so being on opioids consistently was not an option - and I felt neither was being in the situation I was in when there was one final avenue to take. In short, I felt as though it was the SCS or live with things as they were - so for me it was a relatively easy decision to go for it.

    The stimulator itself definitely acts up from time to time and my understanding is it's a work in progress from a tech perspective. For example, I had 2 non-rechargeable ones implanted, each of which lasted a year, before having the rechargeable one implanted as it's was too high risk to keep having that operation every year. If you get the option, i'd go for a non-rechargeable one as you can broadly then forget about it - which I think is the ultimate goal. Until the batteries ran out, I felt they were more consistent.

    In terms of function, mine can be temperamental. Sometimes it works so well I can distract yourself with other things. At others, I've found it can actually make pain worse e.g. sometimes which I charge the battery, it amplifies my nerve pain and my leg won't function properly. This weekend has been one of those instances, but I would say it's rare (unless something has gone wrong with it - which i've also found is rare). I do tend to get the odd mild electric shock but it's more surprising than genuinely horrendous.

    You do of course have to make alterations with one in to how you move etc, but i'm guessing you might have those restraints if you didn't have it due to your underlying condition anyway. For a few weeks post-surgery you can't lift heavy things and you have to be careful around movements, but after that you can experiment more. I didn't find recovery particularly difficult, but I should flag that i've had some more difficult operations so that's my benchmark - I appreciate not everyone will be in the same boat there. It's a relatively small incision for the battery and the strangest part with the lead trial is them testing whether they have the leads in the right place - you're awake and they move it around and give a very mild electric current to test if they have the right place. Mine took a while to find, but it was less painful and more bizarre / interesting. I also found it was slightly strange during the trial to be wandering around with leads coming out of your body - it wasn't a pleasant couple of weeks but it wasn't painful.

    Let me know if you have any other queries - i'm happy to answer any specifics you have if it's still relevant. 

    Steph

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