Spinal Cord Stimulation.

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This topic contains 44 replies, has 10 voices, and was last updated by  rebus 2 months, 2 weeks ago.

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  • #45575

    Nige M
    Participant

    Hi Paul I had mine done about 10 years ago after a gunshot in the military I have to say it’s the best thing that ever happened to me. I suffered for years but now live a pretty normal life so I hope you get the same relief I get.

    #45578

    PaulT_99
    Participant

    Hi Nige,

    This is great to hear.
    I am still really concerned about the actual operation, and how i am going to recover. But i just have to crack on with it.
    As i have been told so many times now, this is the only option for me. Or spend the rest of my life in chronic pain that for me is presently worse than post hip replacement. Its that bad.

    To those of you that have had SCS. Do you still get the electric shock pains ?.
    For me these have been getting worse this month for some reason. They are more frequent and go from thigh right down to a toe. And its like being stabbed in the foot.

    #45581

    rebus
    Participant

    I can only underscore that which Nige M wrote. In 1993, I was told, by a respected orthopaedic surgeon that there was no more to be done. This was after 5 operations – 2 of which had been remedial to correct problems after the first two.
    This left me with debilitating pain in the lower lumbar region and lower legs/feet, in particular.
    My late father (he died in 1982) had been a vet and I remembered about ‘firing’. This was a process in which some horses have nerves in the legs deadened to reduce pain.
    This led me to the Welcome Foundation and a chance contact there led me to an appointment with a consultant at a neurological hospital.
    To cut an even longer story (!) short, it was speedily suggested that an SCS would be of assistance.
    In 2002, after a trial in late 2001, this has proved to be SO, SO true.
    An SCS, in my layman’s terms, works by interfering with the brain’s reception of false pain signals from damaged nerve roots at L5/S1. Minute (and I mean minute) electric shocks which feel like very, very gentle pins and needles get the brain to concentrate on those.
    Nothing is cured and effectiveness, of course, varies with the individual. Post op. recovery was not protracted.
    How much you may be able to do, only you, with time, will ascertain.
    Remember though, if perchance it does not suit you, all can be reversed which is more than be said for many medical treatments !!
    I wish you all the best and hope to hear, in the not too distant future, that you feel much better.

    #45696

    PaulT_99
    Participant

    Just 7 days to go now until the big day !.

    Through word of mouth at work (I work for a massive company with 1000’s of staff). I found out that our head of Payroll had SCS done last year !.
    Had a quick chat with him this afternoon and going to have a meeting with him on Monday.
    Really wish i had met him sooner. Im still quite scared about the whole process and the recovery. So will be nice to sit with someone thats actually had it done at the same hospital and with the same device. (HF10).

    #45737

    PaulT_99
    Participant

    Just 1 day to go !!!!!.
    Friday, 7.30am @ Guys.
    1st on the table.

    To say im nervous is an understatement !.

    On Monday i met a chap who had an SCS implant in May this year. He had a Boston something, not a HF10 as i thought above.
    He said absolutely it was the right decision for him to make, his pain is now down from 10/10 to 4/10, with no meds.
    He said his SCS gives him tingling pins and needles. So im assuming a Low Frequency version.
    Im hoping mine does not do this. Im having a Nervo HF10, new 2018 edition which is now smaller apparently.

    He didnt have the 2 week trial either, he just went straight to the full implant from the off.
    Mines going to be taped to my side for 2 weeks. If im ok with it, then straight back to guys and they will put it in my lower right back, in the soft tissue area.

    • This reply was modified 5 months, 2 weeks ago by  PaulT_99.
    #45744

    AnnieD
    Participant

    Hi Paul – all the best for tomorrow! I’ve been offered this as a last resort. So at least you’re first up, hopefully not much longer to be nervous, can highly recommend focus on the breath mindfulness! take care & best wishes AnnieD

    #45758

    PaulT_99
    Participant

    Hi all !!,

    Well here i am, writing from my bed with my SCS unit running !.

    I had the Op 7am on Fri, super early. The anaesthetist came around and said they only used sedation which worried me a bit. He said not to worry and i literally wouldnt know anything about it.
    Walked into the Op theatre and got laid down onto the bed, face down. He started to put the sedative in and bamn i was gone. Next thing i know im in the recovery room being given sips of water.

    I have the Nervo HF10 Senza 2018 edition trial unit for 7 days and go back in next friday to have the full implant.
    Got back to my private room at Guys at about 11am, then various members from the pain team came to see me. One of them programmed the unit to suit me as best as she could.
    To note, the wires that go into your back have about 20 sections that can be enabled and disabled. It was always my worry that these could move, since only 1 or 2 are enabled. However, the pain nurse told me that they now enable the whole wire by default. The high frequency goes up the wire like a flickering flame effect is the way she explained it to me. This makes it very robust.

    It was explained to me to get ready for what was about to come. She said it will be like my back has been smashed by a Bus, and its going to hurt.
    Got home at about 6pm on Fri and it wasnt too bad. It was sore, but i could manage taking my Tapentadol as well.
    Move onto Sat morning and im crying like a baby in bed. My god it hurt, it was intense. There is no getting away from it, it was like a bus hit me.
    Spent all sat laying on my stomach, and got little sleep through to sunday (today).
    However presently the pain my back is starting to die down and im sitting up in bed with a wad of soft pillows behind me.

    The unit was started off at Level 4, and i have to raise it up to Level 7 during my 1 week.
    Good news is at Level 4 i have Zero pain in my hips, legs, and feet. Yes thats right ZERO pain. Ive not had this in like 20 years. Its amazing, it really seems to be working.
    The HF10 unit has no fuzzy, or electric buzzing feeling. The frequency is so high your brain cannot register it. Its just no pain, and no buzzing.

    So, so far so good. Apart from the recovery of the back operation part, plus the full transplant next week.

    I will update more as my trial week goes along.

    #45759

    rebus
    Participant

    That’s certainly very different to my trial back in the autumn of 2001 !

    Great to hear you have experienced, already, the pain relief. I do hope the ‘proper’ implant has a similar effect.

    My trial was actually undertaken in hospital with, I recall, a wire from the relevant area, out through my flank and attached to a TENS machine. Once ‘switched on’ – the improvement was immediate. I, only half joking, asked for it to be left attached until the time of the real one’s installation ! The trial last a week – a very short week.

    All the best for the future.

    #45765

    Laura
    Participant

    Hi Paul,

    So glad you’ve got through the first part and it’s great to hear it’s working so well.

    Your story has given me hope that I could try this type of SCS as the one I tried at Guy’s about 6 years ago was the one that gives the buzzing/shock feeling which was awful I felt like pulling it out before the trial was up.

    Do hope all continues well and here’s to the start of a better quality of life for you.

    #45766

    PaulT_99
    Participant

    Hi Laura,

    To my knowledge, Guys / St. Thomas do not use low frequency anymore.

    Im on day 3 now, and i now have the unit on No.5, as they have got me to increase it every 2 days, and note the results in a Diary book.
    Even on No.4 i have Zero pain in my hips, legs, and feet. Its so amazing that it actually made me cry last night when talking to my wife about it. I have not experienced pain free in best part of 20yrs. Its very emotional.
    But i still have perfect feeling in my feet. I can feel the carpet under my feet, so feeling has not changed in any way.

    The back pain from the Op is now down from an 8 on day 1, to about a 4. I can sit back in bed now up against pillows and its just a bit sore. Nothing much.
    But then, next Fri im back in and they will make the pocket for the implant.
    For me hes going to put it in my lower left back. Since i sleep mostly on my right side. So that makes sense.

    I must admit i was a little worried after i met the guy at work last week that had a SCS earlier in the year.
    He was at a different hospital in Essex somewhere and had a Boston Scientific unit. Which is low frequency. Hence the buzzing.

    #45783

    PaulT_99
    Participant

    Back at St. Thomas yesterday for a checkup.

    All doing well, and they have booked be back in for this Friday for the implant @ Guys.
    All this travelling to the London hospitals is very tiring, especially when you have just had surgery. Almost 6hrs travelling yesterday.

    My back is so sore, so god knows what its going to be like when they make a little pocket for the scs implant.

    Aside from this, i still have Zero pain in my legs and feet.
    Normally when i wake up in the morning. Generally about 4am, i am awoken by pain. This is so intense it makes me cry. Its crippling. I then hobble to the bathroom at a very slow pace.
    I got out of bed this morning at 8.30. No pain, and i walked normally to the bathroom. Its an astonishing feeling.

    #45792

    Laura
    Participant

    Sounds like a miracle, Paul, so pleased for you and it gives others real hope.

    #45820

    Sarah
    Participant

    Hi
    New to this site and forum. Had the wires implanted yesterday 17th for trial of Nevro HF10. Permanent implant next Wed 24th. After surgery my back is mostly almost pain free. Severe pain over lumbar region where wires are buried for next week. My foot pain has eased very slightly already to 9/10 from a constant 10/10. I have Chemo induced peripheral neuropathy. Waiting list 2.5 years for this therapy.

    #45821

    PaulT_99
    Participant

    Best of luck with your Trial Sarah.
    Im just waiting for the patient transport pickup to go back to guys for the implant this morning.

    This morning when waking i have 1/10 in my lower legs / feet with the device on 4.
    Without i would be at 8/10.

    #45822

    Sarah
    Participant

    Back to pain clinic today for first check. Feet have eased a little to 8/10 from an unbearable 10/10.

    Unit currently P1 6. Very painful surgical area low on back.

    Hope your ok goes well today.

    Regards

    Sarah

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