Spinal Cord Stimulation

[Bunce]

Anyone had any effective results with spinal cord stimulation? With neuropathic pain

[Bananas5]

Morning Bunce

There is actually lots of posts and comments about SCS if you type into the little box.

Bad Back Jimmy comes to mind as one who was successful.

Curlygirl is going through the assessment trials as I speak.

So plenty of info there but happy to tell you anything you need to know.

Have you been offered it or thinking it may be a route for you?

Pat x

[sharonb45 in reply to Bananas5]

Morning

Yes just had mine done 10 weeks ago,ask away anything you want to know

Sharon x

[Bunce in reply to sharonb45]

How r y feeling now? Pain relief? Has it been worthwhile?

[Debs-000]

hello Bunce,,,, ive had the SCS done 14months done,,, now before i tell you my results;;; no 2 people are the same having this done ,, some good some bad,, Personally i regret it big style ,,im taking more tablets now than before i got it,,, ive got pain 24/7 and in more places than i had it to start with,, i have CRPS so the more pain cud be just done to that spreading ,, but surgeon wont do anything alse,,, he told me in January to come back in 3yrs,,,my after was zero,,, its as if they think this is a miracle device,,, well i cant tell you from my own experience,, i wish i never had it done,,,

But please research it yourself as i said no 2 people have the same effects and i do wish you well if you do get it done

Debs xx

[Ru55ell]

Hi Bunce, there are a lot of people who have gone through SCS, personally I've had two DRG implants fitted, the only difference is that with an SCS the area covered is usually a whole limb, but with my DRG they can target very specific areas (in my case my left and right knees)

Each case is never the same, and what works for one person might not have the same results for someone else.

The thing to be mindful of is there are complications that can arise, it can cause a spread, but the benefits can be immense too.

Before I had my system fitted I had to undergo some psychological evaluations to make sure I had the right attitude to it, and that I knew fully of the risks.

If you have pain in a localised area (knee, ankle, foot) it might be worth asking about a DRG implant rather than a SCS as the effects from the stimulation don't 'bleed' out into areas where you don't need it and cause more issues.

Sometimes the facts can distort your opinions on whether a treatment works or not, as has been said many times, each case is different, but try to gather as much information about what others find good and bad about the systems, and then unfortunately it's a hard decision to either undergo the implant or try to look for an alternative.

Personally my DRG implant took a year to settle after surgery, and I have had one lead fail on me which I have just had replaced.

I would say to ask your pain team about whether they think you are a good candidate for SCS and if possible a more localised treatment to control your pain. Neuropathic pain sucks, and then better you can manage things the better quality of life you can look forward to. If you need any more advice or a chat let me know, people who have been through these procedures are only too willing to talk about their experiences and this is something that is invaluable for prospective SCS and DRG patients (I think the NHS should have a support network of past patients to help new patients ask for advice)

Sorry if it doesn't fully answer you question, but there are good and bad sides to everything (even cake!)

If you want to know more or chat let me know, but good luck and hope you can have many pain free days in the future!

[sharonb45]

Hi Bruce

It's like other people have said it works for some and not for others but I'm delighted to tell you that for me it works a treat at the moment, I had a trial one fitted before Christmas and that worked very well and iv just had this one fitted so it's still early days and I'm trying different programmes at the moment and iv had the best scs fitted that there is out at the moment. I have neuropathic pain in my but and down my left leg and secondary back pain at the left hand side.As for medication I was on 220 fentynal patches and now I'm on 67.5 so that tells it's own story.The operation is the worst iv ever had and iv had five others including a spinal fusion and were the battery is is still sore and because it's early days and iv got a lot of fluid around it it takes a long time to change, if you have neuropathic pain my consultant said your the best candidate and he was right after been in constant pain 24/7 for eight years I can now see a bit of light at the end of the tunnel. if you need any advice just ask.

Sharon x

[briar-rose]

hey there,

I had an scs implant fitted in May, unfortunately the lead slipped and wasn't getting the stimulation where I needed it (have crps primarily in left shoulder and arm) so went back in on Wednesday and had the whole surgery re-done, they took the system completely out, and then fitted two wires this time which should be better for coverage. I have to agree with Sharon it is a very painful operation but hoping it will be worth it in the end. feel free to ask any questions, the reps are great for info and some of the American scs implant sites are better for info.

Hope all goes well for you.

Amy.

[Bananas5 in reply to briar-rose]

Ow Ow Ow. Sorry to hear this Amy you hado done so well in the trial.. Everything crssed now it stays put and works.

Pat x

[briar-rose in reply to Bananas5]

hey there,

thankyou, that's really sweet. the coverage is now much better, just hoping they stay put this time as if they migrate again it means opening my spine and securing them directly to it which has to be in Oxford, so trying to be a model patient. Going for my first post op check up tomorrow. how are things your end?

Amy.x

[Curlygirl54]

Hi Bunce,

As Pat said, I'm on the pathway for SCS at St Thomas' hospital. I've seen the consultant who thinks I'm a good candidate and I go for assessment with psychologist and physiotherapist on 7th August. The consultant gave me the outcome results as 30% failure - obviously that's 70% success but I think they purposely say it that way round to manage expectations. It's not a cure all and results vary massively but if, like most of us in here you have tried everything else it's possibly worth it.

I've got a lot of info and peoples experiences from the Facebook group 'Spinal Cord Stimulator U.K.' - don't know if you've come across it?

Happy to answer anything I can to help.

Take good care,

Shirley

[Hidden]

Hi Bunce

Not sure about the Spinal Stimulator but 5 weeks ago I had and ITDD (Intrathecal Drug Delivery Pump) fitted. As I said I'm only 5 weeks post op and so far so good. I'm reducing my opiates on a weekly basis as the pump levels are increased. If you need any further advice or details, please come back to me.

All the best

Donna