Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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Viewing 6 posts - 1 through 6 (of 6 total)
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  • #30016
    Tye1
    Participant

    Hi everyone this may sound like a rant but ive got a few questions i want to throw out there.

    Q1) has anyone else had an SCS implant and afterwards had spreading to other parts of your body? After mine in December of last year ive now had it spread to my right lower arm from the whole of my left arm and in the last few weeks its spread to my right leg. Im hoping its just coincidence not related.

    Q2)what setting do you keep your implant on? I have to have mine on burst at 100% all the time. As soon as i lower it the pain levels go straight back up but the surgical team nurse has recently told me that i shouldnt be having it at that level or on all day. Although the surgical team know about CRPS i dont feel they truly appreciate what we go through as their main focus is installing the implants for all pain management relief not just specifically for CRPS patients. To add to this belief i had a copy of a folllow up letter they sent to my gp saying the implant had been installed on the diagnosis of pain in my left arm.

    Sorry im ranting but if anyone else has had the same issues it would be reassuring to know

    #30034
    Lisa
    Moderator

    Hi Tye1,

    I personally haven’t had an SCS but through volunteering with Burning Nights I have spoken to a few people who have had an SCS and experienced a spread of CRPS to the implant site. Any surgery can trigger off a spread in any part of the body this is because the nervous system is all connected and it would have been aggravated by surgery. However like you said it could just be purely coincidental.

    Do you have a specific pain management doctor that you see? It may be worth asking about the SCS when you see them. And definitely worth getting the potential spread looked at.

    -Lisa

    #30049
    PoppyToms
    Moderator

    Hi Tye1,
    Sorry to hear you’re having a tough time with the SCS. I don’t have one, came very close though. I bottled out and cancelled the op a couple of weeks before I was due it for many reasons, including the things you’ve mentioned.
    Although I can’t speak from experience I was relentless with my questioning about site spreading etc. The consultant couldn’t offer me a likelihood but did tell me if I was concerned afterwards it could be removed to see if it was CRPS or ‘just’ my body rejecting it. I’ve since had spreading without the surgery so who knows if it would have happened anyway, better or worse. I was also advised it would be set to quite low so I could boost it as needed, having it boosted all the time sounds like it’s perhaps not set right for you.
    Definitely go back and speak to them, explain your concerns and hopefully they’ll be able to help solve the issues.
    Let us know how it goes please.

    #30051
    Tye1
    Participant

    Thanks so much Lisa & PoppyToms for replying, im waitimg to see my pain management team and the surgical team but due to covid-19 my apppointments are up the air, like everything else’s. The surgical team assured me it wouldn’t spread after having the implant but no one can be really sure, so wil, have to wait to take it up with them.

    Thanks again to you both, kts really appreciated. I know i can always come here for the best advice, from the people who truly understand what we go through.

    #30077
    Kayleighk
    Participant

    Hi I’m new here type 2. I’m due to have an scs but due to this virus has been put on hold. I have a few concerns about this spreading to the scs site and worry about how effective this would be, my crps is spreading to my other leg and I’m in absoloute agony so in one sense I’m scared to have this op and on the other side this could help take the edge off my pain, I too feel like the consultants/surgical team don’t understand what it’s like to go through all of this. Sometimes I feel like they think all this is in my head and that I’m going mad it’s so frustrating. I do apologise if this doesn’t make sense as currently up all night due to meds and pain. Hope everyone is keeping safe 🙂

    #30211
    Lisa
    Moderator

    Hi Kayleighk

    It’s perfectly understandable to be concerned, as with any surgery there are risks. But it’s important to remember that not everyone has a spread from SCS implant surgery and there are many people out there who are having huge success with an SCS. It’s important to carefully consider your options, maybe do a list of positives and negatives that you can take with you to your next appointment. Also make a note of any questions you have too, it may be they don’t have the answers but it’s worth asking anyway. -Lisa

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