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Spinal Cord Stimulator

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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

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  • nethergreenbudd
    nethergreenbudd khi

    Posted

    Hi everyone, we know this discussion started a long time ago, but after gong through every American site that came up, we are glad to see this one. Sorry to start at the beginning, but we hope it will help with any advice.

    I am a 43 yr old male, who was first diagnosed after many years of pain (pain started in my early 20s) started , with a calcified disc, which was promptly removed, but a few years later, the same pain returned, which resulted in the same operation to the lower disc..

    Everything was great for a good few years, but now strange things have happened.

    Still in daily pain, I have lived to try and get on with things for family, and financial reasons.

    I have noticed even more pain in my right leg, thigh, knee,calf ,ankle, and  couldnt believe the pain could go to the end of my toe.

    I was offered the trial implant 12 weeks ago, but I wasnt sure, Now I have said yes, and have 2 appointments in January to visit.

    My neurosurgeon now wants to see me again inbetween all my appointments!

    What I am asking is, Im looking for a reduction in pain (there is no cure!)  do you think the stimulator willl help?

    We just want to get back to some sort of normality.

    • adythewarrior
      adythewarrior nethergreenbudd

      Posted

      Hi i had the stim trial just before xmas and yes i did get pain reduction, enough to want a permanant implant.The pain reduced from an 8/10 to a 4 which in my case was great ie i could sleep for first time in years.The procedure i thought was gonna be bad but it isn't and the pro's outway the con's.

      Take care buddy.

    • graham6214
      graham6214 nethergreenbudd

      Posted

      hi budd  you have the same chance as any one else which is 50/50 if it works for you , you will be dancing if not you havent lost anything sorry i could not be more posative as mine failed and so far ive not heard of a success story but then agian it is a country wide trial all the best graham
    • the_evil_edna
      the_evil_edna nethergreenbudd

      Posted

      Hi I have been told that my ongoing issues where caused because of the damage the calcified disc did & the fact it was left for so long, My issues started in 2007 & weren't opererated on to remove till 2010, I had no scans, no tests or check ups, just drugs for sciatica if they had given me an MRI in the early days the damage caused by the calcified disc would have been minimal, I had 4 back ops to remove bits of the disc & 1 of those ops took 10 hours & 2 surgeons, They then decided I needed a 2 level fusion which failed but even now there is bits of the calcified disc that is stuck around nerves etc that they say it's too dangerous to remove, I hope you have better luck than me with the SCS, but remember when your reading chatting to peeps like us, it's usua the peeps that have issues that post/chat about the implant, those that it works well for are too busy living life. Good luck x
    • nethergreenbudd
      nethergreenbudd the_evil_edna

      Posted

      Hi, sounds extremely familiar. I was pushed from pillar to post, physiotherapy to accupuncture. Eventualy after about 10 years of pain, and a weeks stay in hospital for major pain relief, I was eventually referred to a neurosurgeon, who quickly organised a MRI scan. When I went for the results, you guessed it, I had a calcified disc! This was removed by him a few months later. 5 years later, I slipped another disc, and went through the same procedure again! Now im told my pain is due to damage at the nerve root, so scs is or should be a help to me.

      Gerry.

    • antony_86552
      antony_86552 adythewarrior

      Posted

      Hi glad you had reduction in pain for getting some sleep, iv been getting about two hrs a night since my accident four years ago as like everone here you know the agony from the site of damage on back down the leg and across the foot, two failed surgerys two eppies two lubards 3rd/4th, drop foot, nero damage ect usual thing Dr can just keep upping and changing  meds that in truth make me not so nice to be around,  50 yrs old, 16 years in same job before accident, DSS make me like scrounger; damage perminant, going for trial scs soon hope im lucky, need to get off meds and try to get some kind of work i am able to do before they take ESA away again,i am doing online training in IT though, new skills ect.

      hope your permanant sucessfull. 

  • gail17114
    gail17114 khi

    Posted

    I can see that it's been 8 months since you first posted on here. I hope everything went well. I had my 1st on put in during July but the wire went through the spinal sack, so it was an instent stop.  A month to heal and the 2nd attempt was done which they got it in much to my relief, but I didn't get that Oh WOW this is an amazing feeling.  By the 3rd day I was ready to pull my hair out. So 3 days later it was taken out.  So it wasn't a very good experience for me but I know I'm not alone with this as I think there are more successes than failiers and I was just unlucky. I too have had several spinal op's, the metal work in my spine is the only thing holding me upright and I too can only walk with walking sticks.
    • the_evil_edna
      the_evil_edna gail17114

      Posted

      Hi Gail,

      reading this they went through the sac & stopped the implant? Wow, can I ask where you had it done? I have a Nevro SCS fitted June last year & during the perm implant the surgeon gave me a CSF leak by puncturing the dura membrane, worst fortnight of my life, it got so bad they had to patch it in the end just to give me some relief, but he continued with the op & fitted the scs, he did apparently debate trying to fix the leak during the op but it's better for your body to repair them naturally he decided to wait, I'm due further spinal surgery & I will be requesting should a leak occur again they fix it there & then, I take my hat off to you for living with it for a month, I'm just intrigued as to why they stopped the implant as it has always been said by my surgeon that the greater risks come from additional surgery so if it can be done there & then it should. Sorry you didn't get any relief at all, mine isn't 'wow' but without it I wouldn't be able to shuffle about or do anything so for that I'm grateful 

    • Chuckmeister
      Chuckmeister the_evil_edna

      Posted

      hi evil_edna. I appreciate this post is now quite old, but thought it pertinent to share my experiences of the Nevro Senza device. 

      After two decrompression and diskectomies on L5/S1 I ended up having fusion at that level. Still no pain relief so I trialled and was subsequently fitted with a Boston Scientific low frequency SCS. For approximately 18 months this was very good and I reduced pain medication a lot. However on higher power levels the tingling and jolting effects were very uncomfortable. After 18 months the BS unit became in effective for me, and I was given the option to try the Nevro high frequency device.

      the trial was amazing, such great pain relief. The full implant was fitted in the same battery site as the BS model in my righ buttock, and re-used the cable and paddle contact plate from the old SCS. Initially excellent relief, but after around 18-22 months the battery migrated upwards and caused me excruciating pain I the insertion scar. After much complaining eventually IT was re-sited in my abdomen on the RH side, level with my trousers waist line. 

      This is was good for only 9 months, then it migrated again and again I had excruciating pain where one of the corners of the rectangular SCS was poking almost completely through my skin. 

      Another operation ion to re-site saw the SCS remain on the RH side of my abdomen but get turned 90 degrees to landscape orientation. This has lasted no more than 8-9 months and I finally have a date to get it removed totally. I have found the Nevro SCS to be very awkward to charge, very uncomfortable due to its shape and size, and most importantly whilst the trial was excellent the continued relief has been decreasingly poor.  

      I li wish anyone having one better luck than I had.

       

    • fred92666
      fred92666 Chuckmeister

      Posted

      I had a Medtronic spine stim and ever time I turned it on I got burning sensations and severe swelling!! I complained and was told it was my body trying to reject it!! After eight weeks of everyday swelling till I was in some much pain I couldn't move!! And it finally exploded!! Ended up in hospital for a week fighting infection/burn !! Since then I am in crippling pain 24/7! They have me on high doses of pain meds wich I hate!! Last week did mri and told me it showed no damage!! I find this and can't believe this outcome!! Something is wrong and they can't figure it out so there kinda blaming me!! Now not only the pain but depression also has set in!! Now they want to put in the new nevro unit!! I am not expecting much from it but they kinda giving me no choice but to out in!! I'm praying!! Has anyone else had this problem??? And have they figured it out!! My mri was taken three years after stim removed!! Can that hide any scars or proof of injury?? I am so lost and confused! This controls my whole life wich I have no life because of the pain!! Any ideas from anyone would be greatly appreciated!! My life minds well be over!!
    • cynthia70714
      cynthia70714 Chuckmeister

      Posted

      Chuck Meister,

      I just had the same problem, I had the unit put on on Sept of 2015 but I couldn't get any relief from it, after 3 months it turned off so i left it off at least I was out of bed after 3 months, well I noticed it was pushing thru my skin, I kept complaining finally I just got it moved to my left abdomen but I feel like I can feel it coming up to the surface again, I ask the dr to place far enough under because I'm eventually gonna lose weight and I am losing weight and I can feel the battery pushing against my skin again. This is getting so frustrating can't they do anything about this? I feel no relief yet from the device either. Limited walking still. I am at the end of my rope on this SCS

      I hope everyone is having some what a pain free day!😉

      Cynthia ( Cindy) usa

    • cynthia70714
      cynthia70714 fred92666

      Posted

      Fred,

      I feel you on the pain level, I'm on the Nevro but to have it moved because of it pushing out into my skin, so they moved it to my abdomen but now I can feel it pushing out, I can't stand being a guinea pig being promised pain relief and you get none, I can hardly walk, but I put my self on a diet so I told the dr to put it down father than normal cause I was gonna lose weight o know can feel the battery again, if this happens again I give up on SCS no pain relief and still on the same amount of pain meds unbelievable.

      Good luck keep us informed on how it goes,

      I feel like scar tissue gives you pain I don't care what anyone or Drs say, cause I know I have pain in the scar tissue areas.

      Pls let me know how it goes for.

      I hope you get some relief soon.

      Cynthia ( Cindy) USA

    • kathy07828
      kathy07828 cynthia70714

      Posted

      Oh Cindy! You poor thing!!! I was really praying that having that damn battery moved one more time would finally help to end your suffering. I'm so sorry! I just met with a new pain Dr who was about to perform his first Nevro surgery, and I mentioned all of the research I've been doing on the SCS's and that the Nevro battery is giving lots of people trouble. He said that it wasn't that big. and he held it in his hand. I said it's as big as my LG cell phone, that I compared the two when I was at another dr's office who suggested I try it, and that the edges were sharper and unit bigger than the Medtronic battery that I also compared side by side. I warned my friend about this also as she was going for a Nevro trial and then implant without doing any research. She called the office and the PA told her not to look at anything on line because none of it is true! I really hope that something comes along to help you. Sending a prayer your way. ~kathy
  • gail17114
    gail17114 khi

    Posted

    Hi, I had mine done in Norwich but they do a trial session first hence they wouldn't put the implant in after they had gone through the sack.  When they tried again a month later you have a trial session for a week to see if you get on with it.  If you don't then they take it out.  If you get some benefit from it then they will put the rest of the stuff inside your bum.  This way the equipment isn't wasted and you feeling at a loss.  Having them puncturing the menbrane was pretty horrible and after a couple of weeks I felt really rough because I wasn't drinking enough fluids.  They didn't fix the leak as it he didn't think it was neccessary as it would heal on it's own.  I was having the one that allowes you to go through an MRI scan so the wire is thicker and as I have massive amounts of scaring on my spine there was always going to be the possiblility that it would happen. There is a new one that is being devloped that works on a high frequency but as of yet it can't go through an MRI scan.  So I have to wait till tec catches up with what I need. Hope that is of some use to you.  You can always ask me more questions if you want. 
  • sophia99074
    sophia99074 khi

    Posted

    Hi,

    My mum has severe neuropathic pain in her leg to the point she has a very poor quality of life. I have been trying to search for treatments and i found this page. Can anyone help in letting me know if this works/ is supposed to work for neuropathic pain in the leg???? Thankyou for reading my comment. 

    • adythewarrior
      adythewarrior sophia99074

      Posted

      Yes a SCS can work for that type of pain.I have had the trial at xmas and my pain score went from 8/10 to 4/10 im having the permanent implant in late February i hope your mum gets some answers soon x
    • sophia99074
      sophia99074 adythewarrior

      Posted

      Im glad to hear it helped you and wish you the best of luck with your implant.  Thanks ever so much at least I know this is a possibility for my mum smile I just have to try fight for alternative options to medicication now. That is all they seem willing to do for my mum it's disgusting they just keep switching her high dose medications around which leave her with diminished cognitive function and still in a lot of pain. If you don't mind me asking how did you go around getting it or did the doctor suggest it? x
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