Is there anybody with Experience of Spinal Co... - Pain Concern

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Is there anybody with Experience of Spinal Cord Stimulation

Incartek profile image
14 Replies

Hi

I have neuropathic pain following a shoulder injury in 2000. For the last four years my pain consultant has recommended that I have spinal cord stimulation, but I have never been able to find people who have had positive success other than for lower back pain.

Do you have - or know anybody who has had success or otherwise - so I could get in contact with them

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Incartek profile image
Incartek
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14 Replies
Shemadee profile image
Shemadee

painsupport.co.uk/connect/dfviewtopics.asp?page=1 Lots of patient led info on this site and members are always very helpful.

Incartek profile image
Incartek

Julie - Of course I use TENS - I guess I'm on my 5th machine! - but do not get too much relief. I guess that is one of the things that makes me reticent about SCS.

Thanks for your input

Daniel

Incartek profile image
Incartek

Thanks Shemadee

DippyHippyChick profile image
DippyHippyChick

I have an assessment for a spinal cord stim programme in jan, will let you know !

I have suffered chronic pain for 12 years, and now spend most of my life in bed, unable to walk or move,so this will be the last ditch for me!

Incartek profile image
Incartek in reply toDippyHippyChick

Hi DippyHippyChick

Sorry your pain causes you so much trouble. Mine affects my quality of life a bit but I try my best to keep going normally. I guess it is managed - and my physiotherapist seems to have hit on something recently!

But after a bad week I think - should I have it.

It would be great to know how you get on.

I'll pray that you get relief. We have a Father who cares.

Best wishes

Daniel

sammyd profile image
sammyd

I know a couple of people who have SCS but recently I saw a daily mail article and heard about a senza system made by Nevro. Apparently its the only stimulator that doesnt buzz of shock you and you can drive and sleep with it on. I'm looking into this for my partner who is going to be having a trial soon, he drives for a living so must get this one.

Incartek profile image
Incartek in reply tosammyd

Dear Sammyd

Thanks - at present my pain is being managed and though approved for SCS, I am reluctant to go ahead. The longer you can leave it, the more improvements there will be.

Hippychick060 profile image
Hippychick060 in reply tosammyd

Hi

I'm currently on a nevro trial for a spinal cord stimulator for neck shoulder and arm pain. I'm 4 days in and fingers crossed is making my symptoms improve. The box around your waist is quite bulky but does not stop me sleeping. It's the not washing hair that is taking its toll!

I have 3 programes with 3 levels of stimulation on each and am working my way through them and keeping a diary. I met another lady in hospital who had one for back pain and she is progressing well too.

They get you to fill out a questionnaire about your pain levels on going in for the trial so they can gear the programme effectively to ensure pain cover. It's gearing the levels to what pain you are having to see which one works best. I go back to the hospital at the week point to have the wound site checked and speak to the reps from nevro on how working to see of they need to change things to try for a second week. They then take it out after 2 weeks because of the risk of infection.

I'm also on antibiotics to fight against the risk of infection.

For me this is a way to get back to work. Fingers crossed they will agree to doing the permanent fixture. They will then go back for funding to be approved by the pct. and then operate and fit the permanent model.

badbackjonny profile image
badbackjonny

Hi Incartek.

I have been researching these for around 3 years and I have been to around 8 different specialists around the UK. I have spoken to countless people who have had these as preeminent implants and people who have had the trial and decided it wasn't for them. From what I have been told it ether works or it doesn't. It is defiantly worth going for the 7 day trial if it is offered to you.

I have been in constand pain at around 6-8 out of 10 for about 6 years now. I have finally got a pain specialist who is willing to go ahead with it and start the process of getting me a trial. The biggest thing for me will be getting off or cutting down most of my painkillers. This would be a dream come true for me. Also the added benefit of the pain relief from the implant (if successful) could mean getting rid of my wheelchair and only using crutches.

So I guess the best thing to say is if you think there is a chance of it helping, why not go for it?

Best of luck.

Kneesup profile image
Kneesup

i have a spinal cord stimulator fitted, if you still want any inforation would you please reply

Susan1942 profile image
Susan1942

I had this implant 22 years ago and it has reduced by pain by about 50% I know that I will never be pain free but the aim was to make me pain tolerable My implant was done in Dundee by a Neurosurgeon I now live in Yorkshire so I attend Pain Clinic in Dundee I saw my Consultant about 3 weeks ago and he told me that in 1996 when they started they were doing about 9 a year When he started there it was about 16 but now it is about 90 a year. Any questions I would be happy to answer For me my pain control is better and I have been able to reduce my medication. Sue

costabuck profile image
costabuck

Hi

I have a nerve stimulator fitted and if I'm being honest it's the best thing I have had done to me that really helps my pain. I initially had the unit internally with electrodes attached directly to my spine over 25 yrs ago. It has been a god send as far as it helps my pain and it was the only thing that did help. I'm now on my 3rd unit but only due to upgrades in the technology. I have also electrodes fitted in the muscle above wear my bra strap would be due to my condition deteriorating so much but if you have tried everything else then it will always be a yes from me. I'm not sure what sort of information you would like but as I was one of the first to have this operation my experience is vast! Let me know if you would like anything else or more information as I'm happy to help.

niklenic profile image
niklenic

I had a spinal stimulator put in surgically in March this year. For my leg pain, it is amazing,but it does not touch my back pain.

Feel free to e-mail me at nicolaelkin@btinternet.com

Auntkaka profile image
Auntkaka

I have a stimulator I have CRPS in both legs and when I first got it it dropped my pain level to around 5 since I've had it for 5 plus years my pain is back up to an 8. Good luck if you decide to get one

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