Spinal Cord Stimulator – Part 3

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  • #34038
    Sweet Caroline
    Participant

    HI Liz, I think everywhere does it differently the hospital i got mine is fairly new at this so i dont know why but at the moment i can turn it on – up – down and off, but im getting more used to moving around with it now. My implant is at the top of my buttock which has made sitting quite painful but is much better now and so is the chest…in fact today is the best i have been but im definately on the mend and cant wait to get shopping with my new friend and cause havoc at the shopping centre …lol.
    I hope your appointment goes well and your in soon for the impant.
    take care

    Caroline

    #34039
    Rob
    Participant

    I feel a bit left out just at the moment haha. The stimulation is coming from my bionic girls! No problem mailing Liz .. Sounds as if all goes well and hope you dont mind me mentioning Caroline that you have told me your team is off to Belgium. I must admit Dr Van Buyten is way ahead in the world on this one and well recognised for being so. For anyone considering scs and wanting facts not ideas he is the man to see. The best few quid I have ever spent and so much came from it and would have done regardless of the outcome. It is interesting that the NHS has been a little behind modern technology on this one but seems to be making an effort to catch up at last. It sounds as though you both have a good chance of benefitting so what better result could there be. Hope that yours is still tinglng away as well Nicky.

    #34040
    nicky
    Participant

    hi all,
    Glad to hear we are all still tingling away nicely except poor rob though Rob its not much longer now and that electric pulse will be running through you too. can you imagine if we go on a group holiday they will love us at the airport.
    My stimulator is at waist level on my right side i have the largest stimulator in me the synergy it really sticks out badly and is very noticable it also seems to get stuck so each time they replace it they have trouble getting it out. Next time i have it done they are going to change the positioning of it and the rechargable one is half the size so it will be less noticeable.
    Ive not heard of it being done in the buttocks before its normally the chest or the flank.
    Caroline i hope the chest infection is better and i hope you both are over the pain from the operation. Happy tingling lots of love Nicky

    #34041
    Sweet Caroline
    Participant

    HI Nicky, Its right at the top of my buttock and when he was implanting it I said to him ‘I hope my bum wont look big in this’….lol….im much better and the chest is clearing up too…..getting more used to and confident with the stim now I go back tomorrow and hopefully they will say I can hav a bath !! I will soak all night…lol.
    Liz I hope your appointment went ok.
    Rob, hope your having a good day and dont hav much longer to wait for your ‘tingles’

    Take care
    Caroline xxx

    #34042
    Liz
    Participant

    Hi Nicky, Caroline & Rob + anyone else reading this thread

    Good to hear that all is pretty good with one & all – you are not being left out Rob, I can’t wait for you to have a chance to try out the stim & have all my fingers & toes crossed for you, you can then join the exclusive ‘tingling’ club!!!

    I am a little sad today – I am without my tingling anymore – it parted company with me yesterday – boo hoo…..I did part with it with sadness as it had made a real difference to me, although it was very sore where it was positioned, I do miss it already, but it is good news & I am on the list for a REAL one – yippeeeeeeeee. Of course it is with some trepidation, as I don’t relish the anaesthetic & all the potential risks that are part of it, however I really feel it is well worth it & am in an odd way, looking forward to it!!!

    I hope that you get the chance of the rechargeable one Nicky as any improvement for you must be very welcome, how are things after the op? Have things settled at all or are you really still struggling?

    Caroline, glad that all sounds good for you – do you find it is giving you good relief & benefit so far? I hope that when you get it programmed it will be even better?

    Well, I reckon it would be amusing to try to all turn up at an airport – wonder what the response would be!!!! ha ha.

    continues….

    #34043
    Liz
    Participant

    continued….

    Seriously, Nicky do you carry a medic alert or anything along those lines as it is something that I have thought about?

    Here’s to tingling with you all in the future & that Rob gets to ‘join the club’ really soon.
    Liz xx

    #34044
    nicky
    Participant

    hi Liz
    I carry a card in my purse wherever i go that says i have an scs implanted but i have thought about getting a medic alert bracelet as well and probably should get one as if god for bid you were in an accident and unconscious and not able to communicate and they were to put you in an mri scanner there could be serious consequences to both you and the stimulator.
    Also about a year ago i got a warning letter through from medtronic saying that you have to tell every consultant, dr, dentist, physio etc that you see that under no circumstances are you able to have a treatment called shortwave diathermy as it can be and has been fatal when used with a scs. So really we should carry some sort of warning with you.
    I hope this helps speak to you soon Nicky

    #34045
    Amanda
    Participant

    Hi Bionic Ladies

    Well as the original Bionic Woman – 16 months and counting I am contributing here with some of my experience – I hope it helps.

    Caroline – Taking a bath should not be on the cards nor swimming at the moment – I was advised not to do either for at least three months to allow the incisions to totally heal up….you certainly dont want to risk an epidural infection just for the sake of a long soak I am sure.
    I also used waterproof dressings for about 2 months after my surgery for implantation as a prevention of infection and it worked for me.
    My trial was 7 weeks so it was a looong time not to have a proper shower….but believe me i did sing on the day when I was allowed to wash and get totally wet lol!!!

    Continued…….Amanda

    #34046
    Amanda
    Participant

    Liz

    I am sure that you miss your electric baby…but at least you can have it again …lets hope it wont be too long to wait! Be careful and let yourself heal now though.
    You asked a good question about wearing a warning ID for medical personnel in the event of an emergency. I wear an SOS Talisman bracelet; carry ID cards from Medtronic and also letters from my Pain Specialist in Belgium and also Dublin: This is very important when going through airports or other magnetic screening like used in Courts etc. Remember you are not permitted regardless of what security staff say to you…to ever pass through a magnetic scaning system…it will damage your Stimulator and may cause it to give you internal burns as well.
    I have had some staff at different airports query about this but have produced my letters and stood my ground and have not encountered too many problems.

    For medical reasons there are many procedures that you cannot have so you need to read about these too…look at http://www.tamethe pain.org for more information about Neurostimulation and the effects of same.

    I am not trying to scare you but you do need to be aware of any risks so that you are confident about your system.

    If you want to email me feel free.

    Best wishes

    Amanda

    #34047
    Liz
    Participant

    Amanda Thanks so much for that info – I do now about some of the issues for those with SCS but I am still learning & feel there is more to it than I think!!!! How are things with you & your SCS – considering you are a more experienced bionic woman….has it helped – any major pitfalls etc etc. Your experience as Nicky’s is really valuable to me.

    Nicky – I have been looking at the talisman website & it looks like it would be a good option, but I am unsure how much info you can put on them, or if they just alert medical professionals to contact a database – a bit like a micro-chip in a dog – Ha Ha Ha…….I worry that if I had a card in my purse, it might not be found in any chaos after an incident, but on the other hand I am not sure how the talisman really works!!! I suppose I am trying to think ahead. I liked the idea that Amanda had about the letters etc as a real backup as I can imagine some ‘jobs worth’ characters trying to insist you go through metal detectors…..

    It never ceases to amaze me how useful this site can be.
    Luv a temporarily unstimulated Liz x

    #34048
    nicky
    Participant

    hi all,
    Amanda im sorry to say hun that you are not the original bionic woman as i had mine put in for the 1st time in 1998 So im 10 years and counting lol. But like Amanda i was also given a letter which i take with me every time i go to the airport or anywhere where there is a strong magnetic force. The dectors used in shops dont seem to be a problem.
    Unlike Amanda ive never had a problem with the staff at the airport etc as soon as i show my letter they just bodily search you instead so dont worry about it i dont think you will have any problems.
    Let me know liz what you decide about the talisman. I dont think i will have a problem as i never go out alone i always have to have someone with me. chat soon Nicky

    #34049
    Rob
    Participant

    Well Im going to play safe and have a great big tatoo across my chest saying “clear off with that defib” That way I can fry when all that sense of feeling has left the body and not bothered anymore. Atleast when mine eventually comes I will have the newest haha.

    #34050
    Sweet Caroline
    Participant

    HI, Had my appointment today with the surgeon he’s still concerned about the chest infection although I feel much better, he said the antibiotics I have been on could be keeping any infection from the op at bay and when I finish them tonight in 3 or 4 days If anything is wrong I will know but because he will be away next week and wont be here to see me if anything is wrong he has given me another weeks course to take. So he didnt do any ‘tinkering’ he will do that in 2 weeks but I am using it more and getting some relief and he says its still settling in. I got the all clear to have a shower Yippee !! feels great.
    Rob as for your tattoo I had said to my hubby I want one of them gold name necklaces made saying ‘do not put me in MRI scanner…lol. I do think its a good idea though having one of the talisman ID’s .

    Thanks again guys for all the support its been wonderful.

    Caroline ‘aka another one of the bionic women’ xxx

    #34051
    Liz
    Participant

    Ha ha Rob, yours will be the shinest & newest!!! Hopefully not too much behind ours….finger crossed for you.

    Caroline, glad that all seems well at the moment & you are managing to use it – I am jealous as I am missing mine…..hopefully I will not have to wait for too long. You should have yours up & programmed by then. Enjoy your shower….

    I have been looking at the Medic alerts available & there seems to be a whole array of them. Some have a talisman where you put your info on & others hold your records on a database – I am now wondering which would be better? I think I might start a thread about them? Perhaps a large tattoo might be a good plan…….’CLEAR OFF’ perhaps….(could think of other wording). I guess the most important thing would be the MRI & diathermy if you were in an accident…. the defib bit is a little hit & miss as if you needed to be shocked it is either life or death, then comes the ethical & moral dliemma of resuscitation – too big to debate that one I think.

    Here’s to the future for the ‘Stimulated 5’
    Hugs
    Liz xx

    #34052
    Rob
    Participant

    Im off to the gym to try and build that chest up!!! I dont want a six pack just enough size to take a roll of wall paper. The crock list haha. Tell hubby 22 carat may be softer but its kinder on the skin Caroline….and a good investment at the monent.

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