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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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  • Kieke
    Kieke khi

    Posted

    I’m not sure if this discussion is still ongoing but I thought I’d join in since there isn’t much info to find online…. (in my opinion).

    My husband has suffered with back pain for over 7 years. Like many of you he’s been referred to everything and everyone out there but nothing has helped. After a long wait he had a Laminectomy (L4/L5) about 5 years ago. The operation did not work and he has now been diagnosed with ‘failed back surgery syndrome’… He has severe pain in his lower back and in both his legs. There isn’t anything they can do for him surgery wise because he has too much nerve damage in this lower back. We do see various specialists on a regular basis but nobody can help. He’s up to his eyeballs in pain medication and has been for years – something that scares me to death…. He can’t work, sleeps very bad and is more or less immobile (can stand or walk for a couple of minutes).

    He is now under the care of Dr Barani in Leeds – the first specialist who genuinely cares about his patients! I can’t rate this guy enough! My husband is trialing the Nevro Senza SCS at the moment. It was fitted last Thursday and he is now on the 4th setting out of the 6 to try.

    The surgery to fit the wires went well but the area where they probed and worked on is very painful. My question is, for those that it worked for, how long did it take before you noticed a difference? I’m getting very anxious and fearful that it’s not working… my husband says it seems to work on his legs but not on his back so far. He seems to think that when we go back for the assessment (next week) they can give him more settings to try but I’m sure that this won’t be the case. I’m already upset about the outcome since it means there is no more hope after this.

    • beverley82498
      beverley82498 Kieke

      Posted

      Hi,I think we've chatted before.My husband is just like yours,with severe nerve damage etc.He had his trial in January and had about a 30%decrease in pain in his back but not his legs.Dr Barani said he would put an extra lead in when the permanent one goes in to try & get to the legs as well.He was on about setting 4.The op to fix the permanent one has been cancelled three times because there are still open stitch marks & Dr.B is worried about infection.Anyway,they can try different settings & change programmes & put extra wires in.So don't lose hope.Dr B & Ben will do everything they can to make it as effective as possible.Just don't expect to be leaping about!😀My hubby says that just the 30% reduction was brilliant & he didn't want t give it back.Like you,it's the last resort,but I'm sure they will be able to do something for your hubby.We kept an hour by hour diary ,settings & how he was feeling,which Dr B was very pleased about & is using in his world wide study of scs.Don't despair,they won't give up on him.😊Good luck
    • Kieke
      Kieke beverley82498

      Posted

      Hi Beverley, we had the appointment this morning and we have been given some more settings to try out during the next week. They weren't keen to extend the trial because of the fear for infection but they checked the stitches, changed the plastic covers and said the wound looks good at the moment. The pain nurse more or less said it's up to him in the end if it works enough to go for the full implant - at the moment it isn't. She did say that they are looking for result at only body part (ie one leg or back only) since this implies that it works and they can make it work for the rest by changing the settings (also as you say the permanent one will have 2 leads). She made it clear that it's all a very long process and that you have to be sure to go for it. After the op it takes up to 1 year for it to fully work. So fingers crossed again! I did forget to ask what would happen if it doesn't work but I forgot! We are going to keep a more detailed journal though. It's a rollar coaster but we have to hang on!
    • beverley82498
      beverley82498 Kieke

      Posted

      Hi,glad they've given him some more settings.Forgot to say that my hubby didn't feel any benefit until about day 4.Keeping a detailed journal is useful so that you can play about with the settings & see how you feel.My hubby's pain gets worse as the day wears on so he turned it up.I'm not sure how many leads they can put in but Dr B said that they would put an extra one to see if it helps his legs but no guarantee.I think the question has to be does he get any relief?When we tell other people that it's about 30% they say "is that all"? But if they knew the level of pain before implant perhaps they'd understand .Hope your hubby gets some good results with extra settings.Try & keep positive,it's hard,I know only too well.Fingers crossed for him.Take care & good luck.
    • fred92666
      fred92666 Kieke

      Posted

      There are over a thousand settings!! It's finding the right one until you find the right one!!
  • khi
    khi

    Posted

    Hi, My husband appears to be in the same position as yours but we are no where near getting a SCS, we are still having to jump through all the other hoops, we are on the TENS at the moment and that is having no effect.  I can't imagine how you must be feeling, every time my husband has an op or gets referred for a different treatment I get my hopes up and pray this will be the one to make the difference, so for you to get to the SCS and think it is not working but be devasting.  However, try and stay positive, it may just need to all settle down, or maybe they can try repositioning or something, I don't know as I say we are not in your position yet.  I am sure it will work, even if it is just some sort of relief.  I will be thinking of you and hopefully your husband will see some difference/relief soon.  Take care xx
    • Kieke
      Kieke khi

      Posted

      Thank you very much for your kind words! I will let you know the outcome, whatever happens x
  • antony_86552
    antony_86552 khi

    Posted

    hi was due to have op for trial in may but triliske hospital has changed from may to aug due to staf shortages and hospital is on black alert meaning all but emergancys only, so its back to Dr to up my meds again but im still hopefull of surgery helping any% in pain loss will be great.
    • khi
      khi antony_86552

      Posted

      Oh my goodness that must be so annoying please keep your chin up you will get your op I am sure, and as they say keep taking the tablets.  I wish you all the best and a speedy op. (sorry about the bold type can't get rid of it!!!)
  • antony_86552
    antony_86552 khi

    Posted

    hi Khi, trial scs is now two weeks to go 14th july, althogh aprehensive still hope it gives releif, i try not to see GP often as all that he can do foor me is to up my meds morphene ect,  and as all they do is to mess with my head and then im useless to anyone. if every thing works as planed and i get relife from pain i may be able to get back to some type of enployment , at 50 yrs old untill the accident i have always worked, but after 16 yrs at same employer they had to let me go, i did understand as now my injury i would not be capable to do what is needed,

    Still hopfull, but getting harder trying to fake to family and freinds that i can handle the pain and being the strong man i was.  

  • Julia_1961
    Julia_1961 khi

    Posted

    Hi i havent been on this site for a while i have just seen consultant today and he has recommended the spinal cord stimulator, i had flexible spinal fusion in 2008 which stopped the pain in my leg but back pain has increased , i have had facet joint injections, electical nerve zapping and am back on strong pain meds. I was worried i might have to have a fixed spinal fusion but dont wont further major surgery. Has your husband now had the implant and how is things going, and his pain levels ? I am desperate to hear from people who have had success with the implant , i k now its not a miricule cure but want my pain  at least reduced so can lead a normal life. Any replies would be greatly appriciated Thanks
    • khi
      khi Julia_1961

      Posted

      I am sorry hear about your pain I know from my husband how hard it is. He hasn't had it yet we are still jumping through the hoops but fingers crossed he will soon. There is a commenter on here call Beverley and her husband has had it so I am sure she will be able to help. Unfortunately I think it is different for each individual. My husband has been given a tens machine which has limited effect but I am hoping this bodes well for the scs. Sorry I can't be more help but good luck.
    • steffemz
      steffemz Julia_1961

      Posted

      Hi there

      I was in horrific pain - long story short I've had l4/l5 fused after failed discectomies, had facet injections, tried acupuncture, hypnotherapy, visualisation etc etc you name it i tried it !

      Fusion helped my lower back pain a lot but I'm left with chronic neuropathic pain down both legs. My sciatic nerve is so severely damaged I can not feel my right leg properly and now have an adapted car to enable me to drive with my left leg in an automatic.

      Before I had the SCS fitted I was bed ridden most of the time and on Oramorph, nortriptiline, amatryptiline, pregabalin - I took about 50 tablets daily just to exist.

      I was lucky enough to go to St Thomas' Hospital in London and was seen by Dr Al'Kaisy - he has been working with the leading Pain Centre in Texas and is one of the Pioneers in this surgery. All I can say is, he is a very clever man.

      My pain relief, even with the trial stim was immediate. Gone was the constant dragging sciatic pain down the backs of both my legs (whilst my right leg is dead to external stimuli I still get the internal pain!) gone is the horrific "spiders with metal pins on their feet"

    • steffemz
      steffemz

      Posted

      Continued....

      And gone are the knitting needle feelings stabbing through my toes when I go to bed!!

      6 months after my full implant I went back to work full time. It's totally amazing and I consider myself very lucky to have had this.

      I'm not saying I'm totally pain free, but I live my life without any other medication.

      Occasionally I go to A&E for IV morphine as I have failed back syndrome and degenerative spine.

      Ok I'll never paraglide, parachute or waterski but my life is worth living again and I treasure each step I take.

      For me it's been a Godsend!

      Hope this helps you and gives you hope :-)

      Steff

    • khi
      khi steffemz

      Posted

      Thanks Steff it does and I am so pleased that you have had such fantastic results, we are just keeping our fingers crossed that we are accepted on to the programme.  I will show your comment to my husband and I know it will give him some hope that things can get better.  

      Take care and thanks again.

    • lindagkelly
      lindagkelly steffemz

      Posted

      steffemz

      May I ask - 7 months later - how are you doing? Ant problems with the battery?

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