1. Community
  2. Brain and nerves
  3. Spinal Problems

Spinal Cord Stimulator

Posted , 146 users are following.

khi
khi

Has anyone had a spinal cord stimulator,it has been one suggestion for my husband who is still suffering after 4 years after his first surgery, he has had a further op two years ago and is still suffering immense pain, has weakness in his leg and finds walking difficult and now needs a stick to walk with. I am hoping someone has had a spinal cord stimulator that has had similar condition as my husband because as I understand it it is only a minor op to implant.  I think the other option is fusion which I have heard horror stories about, especially as he doesn't seem to have success with major ops.  Thanks

19 likes, 888 replies

888 Replies

Prev Next
  • Bungle66
    Bungle66 khi

    Posted

    How is everyone doing now. Hopefully all the surgery has gone well. I'm having a few issues. Went to be reprogrammed on Friday but seem to be feeling more pain in my lower legs now than before. Will see how things progess over the weekend and then call the hospital again next week. Feeling a bit down. It started out so well but now I'm beginning to wonder!
    • cynthia70714
      cynthia70714 Bungle66

      Posted

      Hi,

      Surgery went ok in alot of pain where the battery is and I feel like I don't and can't stay out of bed very long, I thought this was going to be a piece of cake. And it's not. Hope you find the right program. Keep in touch as I will.

      Cindy

    • Nomeds
      Nomeds cynthia70714

      Posted

      LOL. It does get better, 6 weeks now and seem's be Turing the corner. more towards, I'm glad I had it put in..

      Ray

    • Bungle66
      Bungle66 Nomeds

      Posted

      So pleased Cindy that it's all done - now let's hope it's going to work. It does hurt and will for a while. The area on my back is not too bad now but my poor old backside is black and blue! Looks like someone had given me a real good hiding! They allowed me to shower today, which is so lovely. Initially I was told no bath or shower for 6 weeks but I am only just over a week out and either they think I smell (lol) or they are pleased with how the wounds have healed. I'll take take it nice and easy. Ray, you're an old hand at this now - congratulations. Has it been difficult and did you have any issues along the way? I seem to be having coverage issues. In order to get the stim right down into my feet I now have to have the unit up so high I find it hard to walk and the stim sensations seem to move on a daily basis. Did that happen with you? Do you keep yours on continuously or have it on and off. Any info you can provide would be very much appreciated. Best Graham
    • cynthia70714
      cynthia70714 Bungle66

      Posted

      Hey,

      Also I wanted to say is people do not know what we go through day and night, I also started to get left leg cramping and foot cramping but that's the leg I can not feel, so when you get those cramps but can't feel it to its full blown trying to get out of bed with this in your back is torture to put it likely, I cry silently so noone can hear or see me, please keep in touch. Cuz I won't have my friend who help me through some tough days!!! smile

      Cindy

    • lindagkelly
      lindagkelly cynthia70714

      Posted

      Hi Cynthia,

      Just wanted to say I can really relate to you!  My right foot has neuropathy and I get terrible cramps in it - sometimes it's just my toes and they cramp and bend backwards out of my control.  It is very painful to wear a shoe, so I have problems going to the grocery store - because if I do- my foot is in a lot of pain for the rest of the night.  I also get cramping in my right calf.  I am starting to get neuropathy in my left foot now - just starting on the bottom of my foot.  And I have nerve damage in my left thigh from a lateral fusion - the doctor damaged my femoral nerve - so my left thigh aches and burns all the time!  And of course, my back aches where I have the failed fusion L5-S1 for the 2nd time!  They just did a sympathetic nerve blockk - L4 - and all they did was get my L4 disck to spasm up!  Hang in there!  I feel for you!

      Have you decided to do the ganglion surgery?

       

  • khi
    khi

    Posted

    Hi All, I am glad to see that this has started off so many conversations and hopefully provided some help and support to others going through the trauma of spinal injury.  It will be six years since my husbands accident this month and externally he looks the same but in every other aspect our lives have changed.  I don't think the majority of people don't realise that spinal injury is not just physical and how it can change your whole life.  I am lucky that my husband has such a happy disposition as I think if he hadn't he would have been consumed by it.  We have been accepted for a Spinal Cord Stimulator, we have attended day one and have our appointment at the end of this month to discuss which type of scs he should have.  Does anyone have any experience of the "tunnel" type trial, as I have a feeling they be the one that they recommend.  I also just wanted to thank everyone for being so open and sharing their experiences as it has definitely helped knowing what to expect and also knowing we are not alone.  katy
    • beverley82498
      beverley82498 khi

      Posted

      Hi Katy,glad to be able to share our experiences.You are correct,most people don't appreciate the impact on lives.My hubby's problems started in 2008  & our lives have changed beyond what we could ever imagine.We had to close our software business & have just moved from a house to a bungalow in north wales.Still,you make the most of what you have & we are grateful that the implant has given him some relief.We take each day as it comes,good & bad.When it is the last option available you have to try it,nothing to lose.As I've said,my hubby has the Nevro senza.Not sure what you mean by tunnel but his trial consisted of a battery outside the body with leads going into his back (stitched in place). Be careful around door handles,cupboard handles & clothes hangers,also if you have. Cat or dog!The permanant one has a battery stitched into a pocket of skin on his back roughly where his ribs are (more comfortable than on the bum) the leads are under the skin you can't see them,they go for about 4 or 5 inches along his back where there is another incision about 2 inches long where they travel up his spine.I can send you a picture if you want!Hope this helps.Good luck & keep us posted.
    • Bungle66
      Bungle66 khi

      Posted

      Hi Khi, I wish your hubby well with his trial, he's been a long time getting there! Not sure what the tunnel trial is? Mine consisted of having the leads placed into the epidural space and then an external battery was stitched into the centre of my back. I also had a lead coming out of an incision on my left hand side. That was the biggest thing to worry about. I got mine caught up a couple of time and it really hurt. So if he ends up with that tell him to be very careful. This op (both of them) wasn't anywhere near as traumatic or difficult to recover from as my previous open spine ops. My previous ops were at the base of my spine and made things like getting down onto a toilet seat etc very difficult for a while. The incisions for the SCS are half way up my back and actually didn't really hurt me too much at all. The battery, both in the trial and now it's properly implanted in my upper bum cheek has been the most incomfortable thing to deal with. I am still very bruised and sore in that region and I had my op on 17th Sep. The incision where the cord came out on my side is also still very painful, although all my wounds have healed really well. I have had an up and down time since having it done and still need to be 'fine tuned'. I am getting lots of cramping in my left calf due to overstimulation. It was so bad on Friday that I switched the unit off and was going to ask them to remove it on Monday (tomorrow). That said I have been in SO MUCH pain all weekend that tonight I switched it back on and the change is remarkable. My pain levels have once again gone down dramatically and I have successfully played about with my remote control and reached a level of programming that for now seems just right. Fingers crossed it lasts! The feeling is blissful!!! I am still going to speak to the hospital tomorrow for some advice about the cramping.  What you said is so true. Spine issues do affect every aspect of our and our loved ones lives. A sense of humour is a must, the alternative doesn't bear thinking about. I think over the past 5 years I have been through anger, frustration, fear and at times despair. Mostly that has passed now and I am much calmer about life in general and I can laugh at life once more. I don't know why but I do think everything is done for a purpose and that for each of us there is a valuable life lesson in our suffering and pain. I am looking forward to getting back some of my old fun and travel filled life going into next year. To that end I have already booked 2 short breaks in December to Venice and a Christmas market in Prague. I'm going, so my back HAS to be better!!! Lol.
    • lindagkelly
      lindagkelly beverley82498

      Posted

      Hello Beverley, I am contemplating getting a NEVRO. I have a neurostimulator right now that is not working because it was improperly placed. I see your husband  has a Nevro implant.   How is he?  I read some people say that the battery burns their skin. Does your husband have this problem? Is the Nevro helping him?
  • kenny58406
    kenny58406 khi

    Posted

    I had a stimulator put in for post lam and CES that did nothing to help me in 2008. After 9 months of charging and dealing with adjustments it was a total waste of my time and I can not make myself think that this thing is supposed to help me not have the level 7 or 8 daily pain levels that I still have with some kind of vibration that just annoyed me. I had it taken out in 2010 AND AS I TYPE THIS VIBRATION IS STILL GOING STRONG! Think about this, no wire or battery in my back but stimulation constant. I say anyone listening...don't do it! Screwed up in pain management no have no meds and pain, well I did it, so no boo hoo for me.
    • khi
      khi kenny58406

      Posted

      Sorry to hear it was boo hoo for you.  I should think they have improved them since 2008 as there are more varieties now.  I am not sure if you are saying you now have no meds and no pain but I don't think so as your comment seems quite negative.  Hopefully they will find something to ease your pain.  Can you tell me what does Iam and CES stand for.  Thanks
  • jayneki
    jayneki khi

    Posted

    Hi

    I'm 29 and gave had 2 failed discectomies, 4 failed nerve root blocks, a failed caudal epidural and a failed dorsal root ganglion pulsed radiofrequency all in the last 18month. I'm pretty much stuck in bed every day, even with the help of meds and a tens. I got all of my treatment done on my private healthcare but have now been advised my next suggested procedure would be a SCS and this cannot be done privately. I have started my referral through the NHS to pain management in the RVI in Newcastle as I know they have a specialised unit however as I live in Blyth I am classed as Northumberland. My GP advised Northunberland may not fund my surgery as it is within north Tyneside. Please can anyone give me some advice as I am desperate to return to work and to return to having even a normal life. Thanks smile

  • faye_j1978
    faye_j1978 khi

    Posted

    Hi I'm new to site..

    I have recently had nervo spinal stimulator fitted due to failed fusion at l5 and l5s1. It was brilliant almost got no more pain. Never thought I would be able to live pain free again but am now hopeful although will see what happens when I reduce meds. But I have a problem after 3 weeks the battery will no longer charge between me friends n pain management team we have tried everything to try n charge😞I'm now waiting for x-ray to find out what's wrong but looks like mechanical fault..has anyone else had a problem like this. I really want it to work again as was perfect..Faye

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.