Spinal Cord Stimulator, SCS – Part 24

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Viewing 15 posts - 16 through 30 (of 187 total)
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  • #24466
    Navchic
    Participant

    Hiya,
    I have it for neck and arm pain. It works for both for me. I have no sensations (tingling etc) its as if someone put a cloak of pain relief around me. I had severe central neck pain, radiating throughout my neck and down my right arm.The arm pain was very ‘nervy’ like I stuck my finger in a plug socket 🙂
    Its not perfect pain relief all the time, but its a lot better than before the surgery. there are lots of restrictions post op – but in a way it gives you time to re learn some behaviours. Before the surgery I was off the opinion that no matter what I did it wouldn’t alter my long term prognosis – so even if spending the day at the zoo drove the pain crazy, if it was something I enjoyed doing with the kids and friends, so what. In a few days it would go back to how it was before. I pushed it a lot – probably not the wisest thing.
    Now, its like someone has given me this very good management tool in a porcelain egg, which I must mind for ever. I have to make lots of changes to my life, but its worth it – I sleep at night! That was my main agenda before the surgery – enough relief to get sleep. But the actual result, for me, is better than that. The pain is much more manageable than before.
    You have to be willing to work with the technology and be patient with it. I keep a pain diary and look at what I’m doing and how. I try to be very objective about the pain – is it nerve pain, or muscular? The stim doesn’t help muscle pain. T

    #24467
    susieblue
    Participant

    Hi all:) I’m at home recovering after having the Medtronic full implant done last Thursday…still very sore and system not being turned on for another ten days or so:/ could really use it now:/ but hopefully as the trial went well it’ll be worth the wait:) 2 hour op turned into 6!! but the surgeon said he was determined to get the sacral lead in position – said he’s not had a patient so messed up internally with scar tissue and pevlic bones such a mess:( the original lead didn’t help the lower back/hip leg pain but he seems confident this lead will so fingers crossed for me it helps. My only gripe is now OH and couple of others have already started on at me about going to full-time work:/ doesn’t matter how many times you try to explain it’s not a cure it falls on deaf ears:(

    #24468
    Navchic
    Participant

    Hi Susie blue
    Glad to hear it went well for you, sounds traumatic enough, at least that bits over. Your surgeon sounds very good. If I can offer some advice, try not to bother arguing or worrying about other peoples expectations of your recovery. For me it was my mum – constantly on about me taking medication, Every time she saw me – ‘ how many tablets are you taking now!’ Arrrrrrrrrgh!! In the end I just had to ignore her, I don’t comment and she doesn’t ask now. Its a difficult topic for me anyway – I hate taking the tablets and hoped I’d be off them by now, but I’m learning to take one day at a time. So focus on recovering from the surgery and tell the OH and family, that you also hope to go back to work when the time is right – but that won’t be for a while and you could do without everyone making you feel bad about needing time to recover. Sometimes I think our families don’t realise that they are stressing us out by voicing their own issues.
    Hope you are being kind to yourself, and letting yourself recover. T

    #24469
    susieblue
    Participant

    Thanks Navchic:) your reply has helped me feel a lot calmer and less alone…I think our families are our toughest critics most of the time yet they should be our biggest support:/ people who don’t know me tend to be a lot more sympathetic if I say I can’t do something. I have lost a couple of ‘good friends’ over the last year; because we had to leave earlier in the evening, (although 10pm ish I would say is okay for leaving after a meal) they’ve given up on us! So glad I found this forum:) Sue

    #24470
    susieblue
    Participant

    I had my follow up appointment yesterday to have the scs turned on….it’s working pretty well on my rib/shoulder area but no effect on my lower back/hip pain:( after the 4 hours extra surgery – nothing.(I fully appreciate and thank the surgeon and his team for persevering with me though). An x-ray has shown the lead has moved 1mm! Enough to make a totally different outcome…I wasn’t told this was a possibility:( After all the hype after my surgery from the surgeon and nurses etc., i feel so disappointed. I’m really happy the top lead is proving a success but apparently this means I am still on the MST andOramorph for the forseeable future for my back pain. Don’t get me wrong, I’m happy I have some success just feeling a bit bleurgh! this morning after a long day yesterday and a lousy night:/ Who’d have thought 1mm could make that much difference:/ Feel I have to put a smile on my face to the family this morning as they all think I should be feeling over the moon…have they forgotten how much agony I get with my back etc., why is it so difficult to get them to understand:/

    #24471
    Fern
    Participant

    Thats really bad luck, you must be disappointed frustrated and angry. Like you I put the face on for friends and family but some times it’s too much to bare. Can you find an way of expressing it. I used a telephone councillor for a few sessions and it really helped. Had foot op in Dec and was expecting to walk again. Foot op worked, one week into physio and my lower back went again. With the help of the therapy i was able to open up to housemates and they are great suggesting foreign swear words to use. e.g. Turen ( a philips screwdriver in turkish)

    #24472
    dalhousie
    Participant

    I haven’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. (I’d imagine they were easier to dislodge).

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

    I’m presuming you have to be super careful with movements.

    P.S. Sorry to hear about your’s moving Susie. I empathise with the family thing – I don’t get much consideration from mine either.

    #24473
    Navchic
    Participant

    Hi Susie
    I wanted to let you know, I have my SCS insitu for 8 1/2 months. Every time I attend the clinic they check the leads position and so far, every time I’ve been checked the leads are sitting in a slightly different place. The nurse rep from the company says that for the first 3 months after insertion, the leads are like a hair sitting in water (very mobile) for the second 3 months its like a hair in peanut butter (still mobile but less so) and finally between 6 – 9 months they scar in – like a hair stuck into cement. At my last appointment I was 6 months post insertion, they checked my leads 3 times during the one appointment – each time it was in a slightly different spot – with up to 1 mm in the difference. They are very strict with the restrictions in the centre I attend, but when they showed me all the movement of the leads, and the graph of movement I understand why, and it makes me hyper-careful. As your leads are so new, perhaps they will float back to their original location – or perhaps they will be able to work with your progammes. In January (5 months post surgery) I had a massive flare up and all my old symptoms came back in a day – The tea said that the leads also move forwards and back within the fluid around your spine and as such may have moved away from the stimulation site they were using. They changed the programme and within a week I was back to getting good relief. I guess I’m saying don’t loose heart, bear with the technology and take things

    #24474
    Navchic
    Participant

    …. really easy. Don’t mind anyone thinking your “better”. You’re not, you’re just going to get better control of the monster. But if you can bear with it, and be kind to yourself, it might be a really positive thing for you.
    Take care. T

    #24475
    Socket
    Participant

    dalhousie My leads had moved by a whole vertebrae, sometime in the four months since surgery, so the contacts being programmed were completely irrelevant and I was in a bad way. Without further surgery they’ve reprogrammed using different contacts which seem like they may help, but it’s just four days on since reprogramming.

    #24476
    Navchic
    Participant

    So today, nearly 9 months after my SCS was implanted I was brave and went shopping! For food! Obviously I haven’t been on a 9 month diet, but have been relying totally on online food shopping, which has been fantastic but, I miss wandering around the bargain food store, gathering what I need.(also its cheaper!) I really hope I don’t pay for this – 9 months later the leads must be well scarred in by now? Fingers crossed.

    #24477
    Jan Sadler
    Keymaster

    Hi Navchic – how exciting – shopping! You must have been overwhelmed by all the displays and amount of food choices. I’m sure your leads are OK, you’ve been very careful and done everything by the book. Take it easy now and enjoy the holiday weekend.

    #24478
    Navchic
    Participant

    I know Jan it’s a bit sad isn’t it! Since when did food shopping become even a topic of conversation! Anyway, had a lovely day – took my nieces to the cinema to see Tarzan and then off for some healthy choices at McDs!! They had a lovely time 🙂

    #24479
    dalhousie
    Participant

    Navchic – your post is music to my ears – to be able to do those things. It helps to keep me going while I wait for my assessment appointment at the end of June. Hope you continue onward and upwards.

    #24480
    frosty
    Participant

    Hi I am wondering if any one out there can help me as I am about to see my Consultant about going ahead with scs implant. I realise specific hospitals cannot be named but would really like to contact anyone on my email add who has gone thr this procedure at St Thomas hosp in London . I would be really grateful as I have lots of questions and queries . thanks a bunch

    ———————-

    Hi Angela, Moderator 4 here. Just to say that it is fine to mention names of hospitals but not doctors or consultants’ names on the Forum.

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