Please help - has anyone had a spinal cord stimulator?

geemcc

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

geemcc

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

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

geemcc

Thanks @thespiceman

Looks like a great resource

chiarieds

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.

See: https://www.facebook.com/groups/spinalcordstimulatoruk/

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

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

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

@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.

See:https://live.editiondigital.com/e/201mppqns/lifestyle-106#!page41

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.