Spinal Cord Stimulator, SCS – Part 24

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  • #39977
    adoke12
    Spectator

    I havenโ€™t got to the trial stage for SCS yet but I was wondering how easy is it to dislodge the wires?

    A With the temporary wires. (Iโ€™d imagine they were easier to dislodge).

    B With the permanent wires. In time does scar tissue form & make them more stable.

    #39978
    savvy62
    Participant

    My husband had the trial SCS and the wiring is on the outside of the body and very well taped so no worries about dislodging anything.

    With the permanent wiring scar tissue does eventually form around the wires and you will be advised not to do any bending, lifting etc. for around 3 months to allow the scar tissue to form.

    The SCS has not worked well for my husband as he gets no relief where he really needs it so we are hoping to see the consultant (off sick at the moment) as soon as possible to see what can be done.

    Wishing you well and lots of people find the stimulator to be a great success.

    #40008
    ushy
    Participant

    Hi Navchic,
    Thank you for your feed back it was very helpful when I went for my appointment. Apologies for not replying to you straight away but have been very poorly with problems with digestion. When I went for the appointment, the consultant has changed his mind, I saw his assistant first who was explaining to me about the SCS with low frequency, so I mentioned to her that I had been to see the same consultant just over a year ago and he had declined me as a not suitable candidate for the low frequency SCS as my pain are not generalised in one area. My pains are all over my neck, back and legs. at the time he had said that ‘one stimulator would not be sufficient for my pains and they would have had to fit multiple or more and for that reason I will not be suitable’. She went and spoke to the consultant and next I had the consultant and his assistant in the office, telling me that he thinks the nevro senza will not be suitable for me, he feels that the Boston Scientific will be suitable for me as he can fit multiple electrodes to cover more than one area, also, he will have to program both high and low frequency for me. He also said I would have to do a lot of work to build muscles in my back as at the moment there were none. He said he has had people worse than me who could not move at all, where as I can with the aids of sticks, and they are much better.It says on their literature that you have to go to the input programme after your trial but they I am not the ‘able body’ I need to be more independent. I moved my trial operation to the next available date ie from the 6th to the 20th because i was ill and also needed more time.
    Has anyone had the Boston Scientific fitted and if so which model coz its my understanding after research there are more than one models. Also has anyone got rods and screws, cages etc. in there back who has had this SCS fitted and has no problems with it coz I have read somewhere that you should not have SCS if you have any instruments inside you. Please I am desperate as I am not getting any answers from the hospital and am very worried that I do not end up worse than I start.

    #40009
    Jan Sadler
    Keymaster

    Hi Ushy, You could do a search in the ‘Search Forums’ box for Boston Scientific -lots of previous posts will come up. You might like to read through them. As you have doubts, you certainly need to be well informed before you go ahead.
    Good luck.
    Jan at PainSupport

    #40010
    ushy
    Participant

    Hi Jan,
    Thank you for your advise, I will try that.

    #40018
    Jan Sadler
    Keymaster

    SCS BLOG BY PainSupport member Claire

    Claire says she is currently undergoing a spinal cord stimulator trial through the pain unit at St Thomas’. Her son set up a blog for her to record her experiences – on the trial and living with chronic pain.

    Claire has asked me to put a link to the blog on to the PainSupport website in the hope of helping someone else going through the same.

    The link is https://painpalsblog.wordpress.com/

    #40024
    Steve1976
    Participant

    Ushy- I have the Boston Scientific Precision Spectra installed (5 months ago ) I have a 32 Contact paddle lead. This is the most up to date BS model available. If you need to know more I am happy for Jan to pass on my contact details to you. Regards Steve

    #40039
    ushy
    Participant

    Hi,
    Steve1976 and all pain buddies,

    Firstly Steve thank you for your input and yes that would be very helpful.
    I am going to see the Consultant again this evening, as I am still not 100% sure. I have made a list of questions that I would like some answers to.

    Long term damage of the nerve. Which model will I have BS spectra or plus. Whether paddle or the wire. where is he going to place the electrodes as i have a lot of rods and screws from L2 down. Any chance of the this to be electricuted. if I am able to do more and as the pain is masked will i do any more damage to my back. How long will i have to wait after my trial for my permanent if it is successful. what is his successful rate. My consultant is at the st thomas and my trial is paid by my private insurance.

    If anyone think of anything else I should ask then please let me know, I would be very grateful.

    Thank you, Ushy

    • This reply was modified 4 years, 10 months ago by Moderator2. Reason: Hi Ushy, I've had to remove your consultant's name as we can't name specific professionals on this forum. Sorry! Moderator 2
    #40159
    Claire Saul
    Participant

    Hi everyone,
    I had my full implant done last Fri 25th Sept, at the end of a 2 week trial under St Thomas’ & Guy’s. I have a Medtronic low frequency rechargeable (and I think MRI compatible).
    Ushy, I know this is a different Stim to that proposed for you, but in answer to one of your previous questions, I also have screws and rods inserted over 2 fusion surgeries in the lumbar and sacral region. The consultant told me that whilst cages can present a greater challenge, because the electrodes are inserted at a higher level, the metalwork should not prevent a Scs trial.
    I am wondering if anyone out there can offer me some advice/help – firstly I was under the impression that the handheld programmer would be able to turn the stimulator on /off etc if just held reasonably close, but I don’t seem to be able to do this. I have a paddle attachment that plugs into the programmer and then I place the paddle over my flank and hey presto, it works……..do I just need to wait for surgical swelling to go down to get a similar good connection?
    I’m definitely getting relief when turned on (not 100%, still quite positional)but this isn’t spilling over particularly well when I turn off. I was told during my trial that I should be turned on for approx 2 hours and off for the same – I know how that sounds on reading it back! the nurse said that this is what they recommend with the full implant too. How do others manage their on/off periods? I understand that the feelings generated by the Stim shouldn’t become your new norm or baseline, but I worry that as I am reducing my drugs at the moment, I won’t be able to get enough pain relief. It is early days, but I feel such expectation from everyone around me for positive news!
    Jan posted details of the blog I’m keeping – please do visit and add comments etc – in the hope of helping each other, but also getting awareness to the “pain free” community! http://Www.painpalsblog.wordpress.com.
    Thanks in advance, Claire

    #40160
    anniekat
    Participant

    Hi Claire,

    I don’t know much about SCSs but I do hope it works well for you. I enjoy reading your blog! I’m sure it will help other people who are thinking about their SCS trial.

    Annie x

    #40163
    Navchic
    Participant

    Hi Claire,
    Welcome to the club! I have my SCS 2 years now- different model – Nevro high frequency, but also rechargeable.
    I will try to answer a few of your questions. The hand held programmer should work when held close to the implant. Mine works if I turn it on/off during the night by reaching out and using it from my bag beside the bed, so should have a bit of range – Does it light up when you turn it on? Is it working at all, or just not working if a little away from the implant? Are you having to use the charger to turn it on/off every two hours?
    I also have a paddle charger – works well and at least the implant battery should last a long time. I’m wondering if they asked you to turn on/off every 2 hours during the trial to allow you get used to the sensations? I leave mine on 18-20 hours per day, sometimes also all night, but sometimes the sensations are less tolerable during the night, so I switch it off for a few hours and turn it on again in the morning when I wake. With a low frequency stim, my understanding is be that there is no ongoing effect ( when it’s off, the pain relief is gone), So I’m unsure why you would have to now turn it on and off – Is there a Nurse Specialist you can contact from Medtronic? If you have to continue to do that – can they programme your implant to do it itself? The nurse in our clinic, offerred to turn mine off for a few hours every night, however, I wanted to keep control of that- don’t think it was a difficult programming issue.
    It seems very early to be reducing your meds. Take things slowly and be kind to yourself, you have been through a difficult few weeks and 2 big procedures, so do allow yourself to recover. I remember that feeling though- just wanting it all to be over.
    Take Care, T

    #40177
    Claire Saul
    Participant

    Hi Navchic, thanks for your reply. I have seen your words of wisdom on here frequently over the last couple of years, so it is great to be “talking” to you! I have left a message for the CNS at the hospital today and hope to get a call tomorrow so I can quiz her – reading back over older posts, I can see that others were told (like me by the nurse)that if they had a rechargeable it couldn’t be used/charged for several weeks ,only for the doctor to turn it on in recovery and say he was happy for me to use it. I haven’t tried recharging as yet – apparently this should only need doing about once a week. The programmer does light up and signals that there is no communication with the stimulator – but reading the manual again does seem to indicate that the programmer needs to be placed over the implant…….tricky as it is in my upper bum cheek/flank so I can’t read it then! Guess this is why the extension “antenna” is provided – so why don’t they make the carry pouch big enough for both?! I know not expect a miraculous recovery and the inpatient course,run by th hospital as part of the treatment programme, put huge emphasis on this being part of a toolkit – so the on/off instructions did surprise me…..particularly as another participant wasn’t given these instructions. The hospital started several of us reducing our drugs whilst on the course in May – my GP refused to start earlier until we had an Idea for the trial date – and they were quite adamant that we shouldn’t be using opiates. Think I might have been a tricky customer as I taught pain control in another life and my boss started my regime! I will show my nearest and dearest your reply though, as I think there is some expectation that normal service has resumed……thanks for the support, C X

    #40178
    Navchic
    Participant

    Hi Clare,
    I think our whole world would like us to be better, and the concept of surgery which will help but not cure is a little alien. My mum still regularly asks me if I’m disappointed that it didn’t work, even though I think I got a good result. I have many more good days with the SCS.
    My leads are at C2 so I wasn’t allowed to move my neck for 3 months post op, which helped my leads scar in, but caused a lot of pain in the beginning. My pain specialist was adamant that I wasn’t to wean my meds in the begining – he started once I had made some recovery and could move a bit more.
    Hope you get on well with the CNS, perhaps the handheld programmer is turned to no function in the beginning to stop you ‘playing’ with it, until they go through it with you. In the early days, the team controlled a lot, and gradually let me take over control. Now I have 2 programmes that I could alternate, but in reality I use one programme, which works well for me and use the remote to increase/ decrease the stimulation only. My daliances with programme changes were unpleasant – with the high frequency stim it takes a few hours to wash in and wash out the treatment and I get terrible nausea (because it is so close to my brain I think), when I mess with the programme. So I behave myself! Although, apparently I’m the only patient who suggests width bands for my programme! I have also learned though that I don’t always know my own body, and I listen to the nurses suggestions because they are usually right. It took me a long time to get used to the SCS, even though I was happy with the pain relief I didn’t expect side effects.
    I’m really enjoying your blog, its very well done, and well penned. I’ve recommended to a friend who is thinking about SCS.
    With regard to the nearest and dearest, normal service should definitely not be resumed. Apart from the usual post op recovery period, you are also learning how to live with a permanent therapy. People can’t see it, – you’re not swallowing lots of new pills and you don’t have a drip, but you are having a treatment continuously now, and your body is trying to adapt to that, to get the best from it, you need to learn how to manage the SCS with your CNS.
    When I think about it though, my nearest and dearest were not my biggest challenge when it came to expectations of ‘normal service’ I was my biggest challenge! I projected my expectations onto them, and they followed my lead. When I changed my outlook, so did they. Although my mum still wishes I was cured! Dont we all ๐Ÿ™‚
    Good luck with your appointment. T ๐Ÿ™‚

    #40720
    Bex
    Participant

    Hiya,

    Is anyone able to answer a question I have about SCS? I had a Prime Advanced for 5.5 yrs and almost 3 weeks ago had my ipg replaced to now be a restoresensor – how long should the post op pain last? Although my wires weren’t replaced, I’m getting a lot of pain with them (I assume from being pulled about?) and particularly where they are screwed into the ipg. I’m seeing the nurses regularly as part of the incision doesn’t want to heal but am wanting to get back to work. Perhaps naively I thought I’d be a lot more active by now – is this normal & should I just wait longer or is this unusual? It is the first time I’ve had it replaced so not sure what I should be expecting.

    Thanks for any replies x

    #40725
    Navchic
    Participant

    Hi Bex,
    I haven’t had my IPG replaced yet, (only 2 years in). I wonder if there is a lot of scar tissue around the old IPG which would be cut to remove it? I remember my IPG insertion site being much less painful than the wire sites, but that was first time round. I think ‘Floyd’ (my SCS has a name!) is well settled in now and might not like being evicted in a few years time.
    However, if your wound is not healing and you are worried that the pain is related to a wound infection I guess you should contact your team again.
    Take care and rest up ๐Ÿ™‚
    T

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