Spinal cord stimulators

Hi everyone,

I'd really like to know people's thoughts please.

I was diagnosed with CRPS in my foot in Sept 2016, and then the hospital made the biggest mistake and operated on my CRPS foot! and now it's so much worse.

I already have arthritis in my toes, so my bones are slowly disappearing anyway. The blood flow is bad as the colour in my foot changes constantly.

I'm having a lumbar sympathectomy in 2 weeks, and if it increases the blood flow to my foot I'll be getting the stimulator too...

I'm seeing Dr Ivan Ramos-Galvez in the IPASS team in Reading, but I'm hoping to get the DRG (Dorsal Root Ganglion) stimulator at Oxford Uni Hospital if it does all go ahead.

I'd really appreciate your thoughts. I'm seriously nervous - this is an insane whirlwind, not to mention also just being diagnosed with ME :/

Thanks in advance!

4 Replies

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  • Hello ,,,, i have had CRPS for over 4 years now,,,, i got the spinal cord stimulator about just over 3 years ago,,,,I have to say that the results from this implant is never the same for 2 people,,, but i will say that mine has been a nightmare,,, im actually fighting at trying to get it removed ,,, i think that it worsened my condition to the point now that it wudnt make any difference whether it was in or out as its not helping at all,,,,

    Please dont go on my point thou as it does work for some people,,, all i advise you is that when u get the trial done for the week firstly,,,, really see how that is for you first and if it helps before you have the actual implant ,,,,

    I wish u well with yours and hope it does really work for you ,,,

    Debs

  • That sounds awful. I'm really in the dark about it all right now. My pain consultant hasn't said a great deal.

    Only that it's more about getting blood flow to my foot to stop the bones from crumbling.

    I'm not sure if I'll be getting a trial or not. The way he was speaking was that if the lumbar sympathectomy worked, then I'd be getting the SCS (or I'm hoping the DRG)

    Thanks for your message.x

  • I wasnt given great information either when i was getting the implant,,, all i was told was that it wud basically get rid of about 80% of my pain and the surgeon gave me the impression it was perfect ,,,,, i now have about 80% more pain and the surgeon still says its a great thing,,,,

    As far as i know,, you have to have a trial first , everyone i know had the trial to try it,,,i honestly think now that i wanted it to be great and that swhy i went for the full implant after the trial,,, im on more pain meds now that before it was done,,, but as i said no 2 people are the same,,,

    Please do get all the info u can on it first and i hope it does work for you if you get it done xx

  • I opted out having CRPS type II for 5 years. Read all the reviews and information you can. I decided to avoid all invasive procedures. Also, after reading reviews and discussions with physicians found out that if it does provide relief those benefits dissipate after approximately two years. Fyi. After a sweat test I ended up with more allodynia where the straps had been placed. Not good. Neuro doc aggreed that an implant would cause more issues than relief. Don't rush your decision and read up. Best wishes.

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