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Trial spinal cord stimulator à

Posted , 5 users are following.

shanelee1
shanelee1

I have just started a spinal cord stimulator trial. I am wondering if anyone can help me? Can anyone tell me how long it takes to start working and reduce my pain? I had mine implanted yesterday and, as yet, it has had no impact on my pain at all. 

Many Thanks 

1 like, 8 replies

8 Replies

  • christine_CRPS
    christine_CRPS shanelee1

    Posted

    Hi shanelee1

    i hope the operation went well xx

    ive not had one yet because I am not in the right mind to have the operation !!

    but my friend had one and she has reduced her medication 

    so it does work for some xx

    i am really struggling with the burning pain and not sleeping,depression,anxiety etc 

    give it time x

    christine xxx

    • shanelee1
      shanelee1 christine_CRPS

      Posted

      Thank you Christine I have been told if this doesn't work for me I would be advised to have to amputation as it's not long before it becomes infectious then I have to anyway x

    • christine_CRPS
      christine_CRPS shanelee1

      Posted

      Hi Shanelee1

      So sorry to hear that xx

      I was in a work accident where my left hand got caught in a moving drill (safety guard failed to stop!!) and pulled my hand in !!!! I had to have my little finger amputated and the pain just got worse and worse.

      The CRPS has spread upto my elbow !!!!!!

      I have requested to have my left arm off because of the 10/10 PAIN but the specialist has refused !!!

      CRPS specialist has said to avoid any surgery because it could make the CRPS worse !!!!!

      I do feel like my house is like my coffin 😞😞

      I hope your pain improves xx

      Please keep in touch and let me know how u getting on xx

      Gently hugs xx

      Christine CRPS

    • shanelee1
      shanelee1 christine_CRPS

      Posted

      I'm sorry to hear that I know the pain is life changing and you just live to stop the pain I've developed Carpol tunnel syndrome which I've be told I can't have a operations on as will spread to my hands 

      Mine to was a work accident shattering my ankle & fibula/tibia 16 months ago it's left me with server Spreading CRPS which has now started opening up wounds on their own. I have been advised if this trial SCS doesn't work I would be better off having it amputated above in knee to stop it spreading above my knee To have any chance of using a prosthetic leg, as without it the limb will turn bad anyway, so the choice will be taken away from me which they've started saying can be part of why it spreading above the amputation on people With it happening at work I've seen lots of private specialists so I've not had to just rely on the NHS as they sent me on a PMP which was all about learning to except how you are. Which I refuse to never walk again 

      Thank you for telling me about CRPS 

      I hope you get the help you need soon 

      many thanks 

      Shane x 

  • myra_2901
    myra_2901 shanelee1

    Posted

    Hi ya, I noticed a differeance after 4 days. I have a Nevro. CPRS responds differently than for people with other conditions. they get an instant result. I had planed timed exersises to do. my results where calculated with the increased times for the exersises. this was all worked out with my physio and specialist before hand. and my sleep was monitored as well with an app on my phone. 
    • shanelee1
      shanelee1 myra_2901

      Posted

      Thank you Myra I've to go back to London Tomorrow so hopefully it will start get some pain relief

  • 2scared
    2scared shanelee1

    Posted

    I guess I could say I had some pain relief right away. I did two trails, first one was with Bostons SCS. It helped, but I didn't get much coverage in my feet. They suggested I try another SCS by st. Jude's. I did that one too. Each one went ok. I finally had the actual implant on August 9th. I regret getting this thing so much. I am waiting to have it removed. I don't exactly know what happened in surgery, but it wasn't good. Of course I'm awake for this, as I'm supposed to tell the surgeon where I feel stimulation as he is placing the leads. Right in the beginning of surgery, my surgeon hit something that IM SURE HE WASNT SUPPOSE TO HIT. It was the worse pain ever. It literally felt like I had been set on fire. Now I'm worse than before surgery. For some reason I'm getting a diagnoses after surgery of polyneuropathy. Which is supposed to be metabolic. I AM NOT DIABETIC NOR AN ALCOHOLIC. These are the main causes of neuropathy. I didn't have this before surgery. I also had reflexs in both feet before surgery and after surgery, I do not. I don't know what happened in there but it was bad. My primary doctors don't agree with the diagnosis of polyneuropathy but haven't offered what it is. The SCS at this point may be causing me more pain. I will be able to have a mri after they take it out, and they can see what damage was done. I can literally reach back and feel the pack in my back. (So weird) sometimes when I reach back, I get the worst pain in the back of my legs. I want it out. It was very difficult to make the decision to go back into surgery after this experience. Nothing is scheduled yet, but I am terrified. I'm sorry for going off on my own crap. I'm sure it's the anxiety and depression. And I am so sorry for all this you are going through. I truly hope the SCS works for you. Despite my story, I have heard some success stories. I certainly hope and pray you don't have to amputate. Prayers are coming your way with gentle hugs. Please write back ....

  • Hooptie
    Hooptie shanelee1

    Posted

    It should have given you instant relief. If it has not you can very slowly and carefully adjust it. But be easy. It does not work for everyone though. God bless you !!
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