Spinal Cord Stimulation.

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    Hi PaulT_99, Good to hear your story and It’s all going well for you, Hope you have a speedy recovery from it all, and all goes well for your new future, Take care and best wishes, Lee



    Hi all,

    So a quick update.
    Now 2 days post SCS full Implant.
    Back is still recovering from the first part of the operation 2 weeks ago, but now they have cut a pocket just above my bum for the SCS unit.

    At the moment it stings like hell. Sitting down is a real issue, so still sleeping on my front.
    Off to my GP nurse in the morning to have all the bandages changed.

    Good news is the pain levels in my hips, legs and feet. Is still a 0 to a 1 /10.
    I have the unit on its lowest setting at the moment so going to stay with that.

    So just on the road to recovery now.
    Next visit at St. Thomas in 8 weeks for a checkup / evaluation.



    ** Sarah, How are you getting along ?.
    Going for the full implant on Wednesday ?.

    PS: If you do. Try to get released asap and get home as soon as you can.
    I had a 2.5hr hospital transport journey home. And it was rough considering my rear end had just been operated on !.
    Thankfully there was still some aesthetic taking effect, but that wore off by late evening.



    Super to hear that, PaulT, about the pain levels.
    After my full implant which was on the LHS of my abdomen and a wire round my flank and up to the area of T8 on my spine, I had bruising from my armpit to my thigh !

    Don’t be concerned if you find that you need to ‘up’ the settings as you become more active.
    Also, I know the design of mine is VERY much older, but you may find the sensations are quite sensitive to the position in which, say, you’re sitting (when you can !). All I can say, is learn how to use that to advantage as, for me, a slight change when I have soreness on the soles of my feet, for example, can enhance the efficacy of the device without altering the settings. Once they’ve taken effect, resume previous position.

    Wish you all the best with your progress.



    Hi Rebus,

    you may find the sensations are quite sensitive to the position in which, say, you’re sitting (when you can !). All I can say, is learn how to use that to advantage as, for me, a slight change when I have soreness on the soles of my feet, for example, can enhance the efficacy of the device without altering the settings. Once they’ve taken effect, resume previous position.-

    This is because the Wire has 20 segments on it, and in the past they only enabled 1 or 2 of these segments. This meant if the wire moves, it can move out of alignment with the Nerve spur thats causing your issue. Causing a change in pain reduction.
    Now however, Guys hospital enable all 20 segments on the wire. So no matter how much the wire moves, you still have the same pain reducing power.



    Thanks for the info., PaulT.

    Just goes to demonstrate how these devices have changed over the years ! In an earlier ‘post’, I mentioned that mine was originally fitted in 2002. I’m now using the third replacement as the batteries in the earlier ones waned.

    Just to re-iterate, I trust all goes well for you.



    Hi Paul

    On course for full implant on Wednesday. My Daughter driving me as transport has been a nightmare. Left 3 & half hours waiting after 1st check up. Unable to sit, stand or walk. Ended up in more pain than I started. 1st to theatre, hopefully early discharge and 1 hour home.

    Not getting great pain relief from trial, but the little improvement on one foot is heavenly luxury. Also getting more than 2 hours sleep after nearly 5 years. Hope further programming and time will see more pain relief.

    Any advice is most welcome, you are a week ahead of me.





    Hi Sarah,

    Yes i appear to be exactly 1 week ahead of you. Dr. Smith did my full implant last Fri.
    This morning when i woke up i had a pain level of 1/10 in my legs. That would normally be a 9/10 at waking. 8/10 during the day.
    Once i got moving that went down to 0/10 again. If feels so great to be pain free, and also it feels odd at the same time.
    Ive lived with high levels of chronic pain for so long its been part of my life. Now its gone.

    RE The Hospital transport. Yeh sometimes you can be unlucky with Guys/St Thomas transport. Once earlier in the year i had to wait 4hrs for a lift back home. But Recently its been less than 30mins.
    The trip back home was the hardest bit, sitting in a car seat for 2.5hrs when my bum has just been operated on !. Not nice.

    Its still really sore now. Im sitting up in bed at the moment with pillows behind me, but im leaning to the right, to keep pressure off the left side of my bum.

    Have been feeling quite down today, and my wife doesnt get why. I think its just because im stuck in bed pretty much and not able to do much.
    The restrictions are quite comprehensive. The biggest one being DO NOT BEND. At all, not even the slightest. Which is actually quite a hard thing to do.

    Getting used to charging myself every day.
    My unit is on non-stop day and night, on level 4. And it only takes 25mins to charge every night. Ive been doing it at 8pm just to get myself into the habbit / pattern.

    Stephanie is the pain nurse you will see after the Op. She does all the programming / changes you need. So make sure you discuss with her and get any changes you need before they send you off home.

    My next step is on the 2nd nov. Bandages off and stitches out. Cannot wait for that quite frankly. My back is getting quite itchy !.

    Best of luck for Wed, and keep in touch once you are well enough.



    Now 2 days after implant at Addenbrookes. Unit is off until 31st at next appt. Dressings to be removed and switch on!



    Bit of an update from me. Perhaps someone can advise me as well.
    (Ive also emailed the Pain Nurses at St. Thomas).

    This afternoon i got a stabbing pain in my back. It lasted for almost 3 hrs and made me cry. It was really severe.
    It was just to the left of the centre incision in the middle of my back. There is a very small lump there as this was the site of the pain.
    I assume at this point, that is the entry point where the wires enter the spinal cord cavity.

    The pain has calmed down now, but that spot is still very tender.
    Dont know what i did to cause it. Im taking things super easy at home and mostly just sitting up in bed.

    Anyone got any ideas ?. Hopefully the pain nurses reply tomorrow.



    Really sorry to hear that.
    My system is much older than yours so there are probably few similarities.

    All I can suggest is that you try to re-trace things you were doing prior to the episode and avoid. Even 16 years later, I still have things I avoid.

    Hope you receive helpful advice from your professionals.



    Hi Paul.
    That is where I had severe sharp pain for the whole week after the wires went in. Was told it was muscle spasm following surgery. Since the wires were moved across for implant on my right. Have had no more sharp pain there except one short twinge from A bad movement!
    Dressings off tomorrow and unit switched back on. How I have missed it this week. Cannot have anything touch my hyper sensitive feet. Also propped up on pillows in bed, can just about lie on left side but get very stuck. This can only get better?



    Hi all,

    **Sarah. My trial was tunnelled to the right, and then the real implant on the left.
    Again for the last 2 days its been quite painful on my back. The pain nurses at St. Thomas say its the wire. And sometimes fluid builds up around the wire. Its just the body adjusting to the foreign objects.

    Pain control to my lower body still working great. 1/10 in the morning, and dropping to nothing during the day. Its marvellous.
    All stitches out tomorrow, yay !.



    Just a little update. I guess im now 2 months post implant.
    Morning pain is 2/10 so a little up on before. But once i get moving it goes down to a 1/10 during the day. I can still feel the burning sensation in my legs / feet. But only just.

    During a few random days at Christmas i decided to turn the unit off fully for the first time. When about to fall asleep in bed.
    I just wanted to experiment to see what the pain would come back feeling like.
    Sure enough, woke up both times at about 4am with my legs on fire and massive pain.
    Turned the unit back on and the pain was still there which made me freak out a bit. But after a short while, say 30mins the pain faded away.

    Dont think i will do that again !, it stays on 24/7 now.
    The unit placement is still an issue for me, it just hurts all the time im sitting.
    Im quite a light frame i guess and i dont have much “padding”. So the Nevro unit sticks out of my skin, actually stretching the surrounding skin when im sitting. Its really sore.
    Ive now taken to sitting on our large sofa at home on my right side, sort of laying down. So no pressure at all on the left side of my bum.
    So i guess i will have to live with the discomfort of the device for the rest of my life. Still better than the fire thats been raging down my legs for the last 17yrs !.



    Good to hear from you again and that the unit is helping so much.
    I also sit “side on” for a different reason, though. Apart from lower lumbar pain, I also have the sensation on bad ‘bruising’ on the soles of my feet – particularly the right one.
    Hopefully, despite being somewhat slighter in build than me (!) you’ll find it settles a little further into what tissue there is. Mine (by Medtronic) is in the lower left of my abdomen and sometimes, in the early days (way back in 2002 !), I’d catch on something – I’m not the most deft of people – but lots better over the last 12+ years.

    One thing I would say, is to try not to ‘self-limit’ oneself by imposing too many restrictions on what you think you can do. O K, sometimes it’ll not go quite right – your ‘off’ experiment, for example.
    Anyway, enough preaching and I wish you all the best and better times.

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