Spinal Cord Stimulation.

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This topic contains 44 replies, has 10 voices, and was last updated by  rebus 1 week, 6 days ago.

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  • #44456

    PaulT_99
    Participant

    Hi all,

    Just wondering if we have any people on the forum that have had “Spinal Cord Stimulation surgery” ?.

    I have severe large and small nerve damage in my legs. As the result of some 7 hip surgeries.
    Finally after 6+ years of pain clinic attendance, and now being looked after by St. Thomas Pain Clinic in London. They have put me forward for Spinal Cord Stimulation surgery.
    My very first appointment to start the process is on Monday, and apparently its a 6 month process of readiness before the big Op. I even have to go on a 1 week residential training course !.

    Essentially 3 probes will be put into my spine in the lumbar region, and a control box is buried in the fatty tissue in your bum.
    This also allows wireless re-charging of the device by putting a charging pad in your rear jeans pocket.
    The device stimulates the spinal cord and is controlled by a remote fob. So i can dial in the amount of pain relief i can get. I am told that it will virtually eliminate All Pain from the waist down.

    The process seems a bit daunting though, as does the surgery. Given what previous surgery has done to me already, it is of concern. Although this should fix me.

    Thus interested to hear from those that have been through this.
    Not much about it on the Net yet, as its relatively new.

    http://www.guysandstthomas.nhs.uk/resources/patient-information/perioperative/pain/spinal-cord-stimulation.pdf

    #44457

    Jan Sadler
    Keymaster

    Hi Paul, Many people who have been on this forum have had spinal cord stimulators fitted.

    Type ‘Spinal Cord Stimulator, SCS’ into the ‘Search Forums’ box and it will bring up hundreds of posts on the subject.

    We wish you success and hope the stimulator does what you want.

    Keep in touch along the way and let us know how you are doing.

    Jan at PainSupport

    #44460

    Navchic
    Participant

    Hi Paul,

    I have had a spinal cord stimulator (Nevro high frequency) for the past 4 years for a neck injury. I had tried lots of other procedures first, like yourself – some with short term helpful benefits, some less so.
    As Jan says there is a lot of information if you use the search bar under Spinal Cord Stimulation, including at least one link to a blog ‘Pain Pals'( I think she was also a patient at St Thomas) and lots of stories both positive and negative.
    I’m very glad I had mine done, although it was a difficult first year while we tried to get the programmes right and get used to the stimulation. I’m now working full time in a busy job and manage my pain well with a combination of the SCS, and some medication (a lot less than before)
    From your post, you seem to have lots of information, if you have any specific queries just shout 🙂
    Take care T

    #44464

    PaulT_99
    Participant

    Hi Navchic,

    Well i had my appointment at St Thomas today. Was there for 4hrs !.
    Met with the Dr to talk about the SCS and the entire process. Then had to see a psychiatric specialist and then a physiotherapist.
    After all that and a million questions they have agreed to proceed.
    No awaiting the appointment for the 2 week residential course.

    One of my main questions they could not really answer. Was about discomfort of the unit. I have artificial hips, and sometimes they are uncomfortable. And on occasion i actually feel the metal cup digging into tissue when sat for long periods. Today they were saying the box of tricks is embedded into the fatty tissue of your bum. So you sat on it all the time.
    So if anyone has had it placed there, how are you getting on with it.
    Is it that noticeable ?.

    thanks in advance.

    #44466

    Navchic
    Participant

    Hi Paul,

    My stim box is in my abdomen, I had similar concerns about having it in my hip. I’m fairly thin so I thought it would be uncomfortable. My consultant agreed that they would put it in, although I need to be careful not to gain / loose weight as the box may slip in that position.I think it makes things technically more difficult in theatre, as they have to turn you over to place in your abdomen.
    I am occasionally aware of it being there – if I am at the sink and it presses against the counter. It isn’t obvious to other people (unless I’m undressed). I have never had problems at the airport either – you can’t go through the magnetic metal detectors. I am manually searched every time I leave the country, but even those people don’t seem aware of the box. Mine is about the size of an iphone. Which type of SCS are you getting?
    T

    #44467

    Laura
    Participant

    Hi Paul,

    I had my trial with a SCS at St Thomas’ too, although it’s about 5 years ago.

    I didn’t get on with it a all, I had to turn it up pretty high to get the vibrations to cover the pain in my legs so every time I moved it was like an electric current running through me. But… it was well worth the trial, the people at St Thomas’ are great aren’t they? I do hope it works well for you.

    #44469

    PaulT_99
    Participant

    Hi Laura,

    Yes the team there are really great. They do actually care about trying to make you feel better.

    They told me the SCS will dull the pain in levels. Nothing has been mentioned about a Vibration feeling, or electric current type feeling.

    Can you explain more please ?.

    #44472

    Laura
    Participant

    Hi Paul,

    I tried the Medtronic type of SCS, it uses electrical pulses rather like a TENS machine.

    I think when this subject has been discussed before that others had the type that don’t give you the electrical pulses that you can feel. Perhaps it depends on what kind of pain you have? There’s lots of info on Medtronic’s website. Have the hospital told you the type of implant you’re going to try?

    #45056

    PaulT_99
    Participant

    Well im off to St. Thomas early in the morning for my first stage of SCS.
    Really hoping for some sort of success as after all these years im at the end of what i can take with my daily pain. So this has to do something.

    #45058

    Laura
    Participant

    Really hope it works out well for you Paul, do let us know how you get on.

    Laura

    #45059

    lc
    Participant

    Hi Paul, Good luck with it all I hope it all works well for you. Let us know how you get on. take Care and Best Wishes. Lee

    #45167

    rebus
    Participant

    Hope the implant surgery went well for you or, if you’ve only had the trial, that went well.
    I have had a SCS since 2002 (no, not a typo !). It is a Medtronic Itrel 3 – this model has, I believe, been superceded and I’m currently using the third replacement after expiry of the batteries in the earlier ones.
    It is in the left hand side of my abdomen at about waist level.
    For me, it has worked very well – I have nerve root compression at L5/S1.Over the years, I have learnt the level which works well for most of the day. I switch it to ‘stand by’ at night for two reasons. I. The stimulation is very ‘position sensitive’ so I don’t want it waking me up and 2. extends the battery life.
    The sensitivity to position actually works well for me because, if, for example, I want to achieve extra stimulation in the soles of my feet, I sit and lean back. Hey presto ! Equally, if I wish to go further down one leg only, lean back and slightly to the left or right, as desired.
    Also, of course, I can turn up the amplitude if overall pain/discomfort levels are particularly unpleasant.
    Please to report that once the initial bruising, ‘post op’, subsided, I have, to date, experienced only occasional discomfort from the actual siting of the unit itself.
    All the best and hope it is as successful for you. Any further info. you may want, let me know and I’ll try help.

    #45186

    amandaF
    Participant

    Hi Paul

    I have a spinal cord stimulator, I have had this for just over 3 years.

    I had a mesh surgery that went wrong, I have damage to my obturator nerves. The hope was that i would be able to reduce my medication.

    Unfortunately this has not happened, however it does take the edge of the pain.

    When I first had it done I had a huge controller, I had my battery changed in December & now I have a small controller.

    If I can help any more do let me know.

    I felt I had to try this

    Kind regards

    Amanda

    #45526

    PaulT_99
    Participant

    Bit in the daily mail today about SCS.

    I have the 2nd part of mind done in the 2nd week of Sept. Actually implanting the Nervo HF10 box. Literally cannot wait !.

    http://www.dailymail.co.uk/health/article-6098129/Spine-implant-relieves-torment-nerve-pain.html

    #45527

    rebus
    Participant

    Paul,
    I do sincerely hope that you obtain the substantial good effects that I did.
    To give you an idea, after I had had the trial unit installed, I telephoned my then wife – coin op ward ‘phone (those were the days !) – and told her how well it was working.

    Unbeknownst to me, she ‘phoned the ward sister to check I still wasn’t having any post anaesthesia euphoria !

    Good luck

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