Spinal cord stimulator – questions

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This topic contains 82 replies, has 11 voices, and was last updated by  PaulT_99 1 month, 3 weeks ago.

Viewing 15 posts - 46 through 60 (of 83 total)
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  • #46554

    Sarah
    Participant

    Hi SCS people
    I am now 5 months since permanent implant. Still hardly any pain relief, but I can push the pain around with different settings. Switching it off makes me realise it must be doing something!
    Have about another 2 month wait for surgery to move the battery. This has been stabbing into my hip since the initial swelling went down. Surgeon recently agreed it is in a bad position. Turned about 45° and very close to skin surface.
    Sitting is very painful, so still having to spend many hours lying down. Walking very difficult.

    #46557

    SharonH10
    Participant

    Hi Paul

    Bless you, so pleased you’re getting relief now. It really takes it out of you. I’ve been having back surgeries for 10 years. Now have nerve damage and cant feel bottom of my left leg. They cant fix that but I’m just hoping to reduce the pain. Once I have the main implant I may ask about those pills. I was never offered those. My pain consultant didnt agree with giving me meds, just wanted to keep giving me nerve block injections etc, which never worked.

    Sweeping mode sounds interesting. Where is your pain? Mine is back,coccyx, pelvis and legs.

    The pics have really helped explain thank you.

    Think I’m changing programmes again today. Worried I’ll end up with another bad day. Yes is was like the the muscles were in spasm.

    Have an appointment to see consultant and nevro guy tommorow in London. I’m scared about the main OP. Which is silly as I’ve had plenty of ops. Maybe it’s that I’m scared it wont work.

    • This reply was modified 8 months, 3 weeks ago by  Moderator2. Reason: I've edited out the surgeon's name. It's just in case someone recognises him/her self, however unlikely! Hope you can get some more relief for your pain
    #46559

    SharonH10
    Participant

    Hi forgot to ask,

    For the main implant surgery did you stay overnight? Also were you given heavy sedation or general

    They keep giving me conflicting advice!

    Having a slightly better day today. Although a little tearful.

    #46560

    SharonH10
    Participant

    Hi Sarah

    I’m so sorry you’ve not had much pain relief. I really hope moving the battery helps you get more comfortable. Is there nothing else they can do to help??

    Sharon

    #46561

    Sarah
    Participant

    Hi Sharon. The perm implant was under GA. 1st down to theatre. Home tea time the same day. No switch on for a week, back to previous level of pain. I was on no meds for pain relief as side effects were too bad. The trial was really effective for me. The perm has not been any way as good yet.. back to pain clinic next Thurs to reset again.

    #46562

    PaulT_99
    Participant

    Hi Sharon,

    Both of mine back in November last year @ Guys were both “Sedation”.
    I raised concerns about this, as my previous 8 Operations for other things (yes 8), have all been Generals.

    The guy said dont worry you wont know about a thing, or remember anything. He said if there was any concern he would immediately change to a General.
    So i took his word, and sure enough, i layed down on the table chatting to the nurses, and bamn was gone. Next thing woke up in the recovery room.

    Both the Trial and the Full, i had the op about 11am, and was on my way home by 4pm the same day.
    Edit…. Mine was configured and turned on the same day before i went home.

    • This reply was modified 8 months, 3 weeks ago by  PaulT_99. Reason: forgot something
    #46564

    PaulT_99
    Participant

    Hi Sarah,

    I know what you mean by the battery being painful when sitting. I still get that some days.
    I noticed when in my car, when i had the heated seats on medium it really helped.

    So following that, i got an electric heating pad from Argos. Think it was 20 quid. I now have that on the sofa behind my back / bum. Its lovely !.

    #46574

    SharonH10
    Participant

    Hi everyone. All I can say is OUCH!!!
    Had my OP yesterday. Was very sick after but still came home same day. Worst train journey ever! I was in tears. Haven’t slept much due to pain. As with yours Paul, my unit was switched on before I left.

    Wanted to thank you again for your support. Your advice means I knew what to expect. Always good to be one step ahead.

    I was in theatre for 2 hours, then 2 hour recovery. Do you know how long you were in for?

    Standing and sitting are so painful. I will be laying down for a while that’s for sure.

    #46619

    mjkushard
    Spectator

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    #46694

    wendyjay
    Participant

    I just want to recommend lidocaine patches (especially at first and definitely for sleeping) and any type of CBD ointment to apply over your unit once your wound has healed. I’ve had my implant for almost 2 years and I still use the CBD on some days. They were both life savers for me getting through the first year. It truly takes months for the proper scar tissue to heal inside and for the site to be less tender. Granted it got better every week.

    #46695

    PaulT_99
    Participant

    Wendy.
    Good call on the Lidocane patches. Ive used them before and they are good just for localised relief.

    Im into month 6 now of post surgery and my battery placement is still stinging.
    St. Thomas have just asked me to come in for another review. May have to look at moving it.

    #46851

    PaulT_99
    Participant

    Hi all,

    A bit of an update.
    Unfortunately things have really gone downhill for me. It would seem my Nevro HF10 is not working anymore.

    At least that what it feels like for me. Ive got it turned up higher and im no getting any relief at all. Additionally when i go to charge it at night. Its finished in less than 10mins. Where as it used to take 30mins.
    So im sure something is wrong with it. And i have to wait for 3 weeks until St. Thomas can see me 🙁

    So back on Tapentadol….

    #46852

    Lc
    Participant

    Hi PaulT_99, been following your posts, sorry to hear your having trouble with it at the moment, after what seemed to be a Good start at lowering your pain levels despite the pain from the Op ect. I think that’s the trouble with rechargeable batteries they either work for years with no problem, but over time they do deteriorate or don’t seem to last 5 mins. sounds like the fault is with the rechargeable batteries in the device so don’t be surprised if they decide to change the unit. Hope all goes well for you at St. Thomas in 3 weeks.at least you had a back up even though it was back on Tapentadol. Hope it gets all sorted out sooner rather than later. Take care and best wishes. Lee

    #46857

    Sarah
    Participant

    Hi Paul, sorry to hear your Nevro having problems, you were doing so well. I am finally having battery moved on 12th June. It is so close to skin and still hurting badly after 8 months. Presses into muscle from hip joint to sciatic nerve. Still minimal pain relief in feet, but the different setting can push the pain around.

    #46954

    PaulT_99
    Participant

    Another update.
    Back at St Thomas today, re my HF10 potentially not working.

    Saw my Surgeon (cant say the name on the forum), and the pain nurse that does the re-programming.
    Op site all perfect. Ive lost a bit more weight, meaning there is less padding around the pocket the HF10 sits in. Thus why it gets a bit sore. Anyway, learned to live with that. Its nothing compared to all my other issues.

    Logs in the unit look perfect. No issues.
    So the pain nurse added additional programs, and has given me a stepped path to follow over the next few months. To see if things improve.
    Also sent me for an xray, and the wire is spot on. Not moved at all.

    I also found out some things today, that were not mentioned. Or are the complete opposite of what i was told on the 2 week residential SCS course.

    A. I only have 1 wire, not 2. Apparently this is mostly cost saving as the wires are massively expensive. And the 1 wire covers enough spinal nerve trunks for my particular pain.

    B. If you find a level on the HF10 that works well for you. I.e. P1 L5. They stay on that and never change it. Dont go up and down power levels during the day. (Which is what i have been doing). I have been told, if you find a level working for you, then leave it well alone.

    C. I mentioned that i try not to bend my back, or if i do its only a tiny bit. Say about 30 degrees max. As per the training on the SCS training course.
    Apparently i “Should” now be bending my back as much as i comfortably can do, in normal activities. I.e bending down to pick up the dogs water bowl.
    I should not have been keeping myself so rigid.

    All in all good news. Theres nothing wrong with it, and the wire is spot on and has not moved. So fingers crossed i will be back on track shortly.

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