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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • CRPS moving... Oh no!!

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    Old 07-18-2014, 08:58 AM   #1
    MiaBelle
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    CRPS moving... Oh no!!

    I have CRPS in my left leg. I had my first stimulator in '08. The battery site was in wrong site and giving me tons of pain. Instead of moving the battery I was told to have another system with more leads put in. Ever since I've had increasing pain in my back and hips. I was doing RFA's and SI joint injections which really helped for a couple years. This year it hasn't and the pain is awful in my hips. I finally was sent to a pain specialist who thinks my CRPS could be moving. He's going to try an stop it with sympathetic nerve blocks... But first I have to make sure nothing is wrong with my hips. I have hip injections next week and if that helps he wants me to see an orthopedic surgeon. If not we go for more injections. My stimulator now has 16 leads but isn't placed right. Only 2 1/2 rows reach my left side. This new dr wants to put a 32 lead or a paddle stimulator in. He also wants me to get off all pain meds. This seems like such a long and scary journey. Has anyone else's CRPS moved? How fast? Any due to stimulator or surgeries?

     
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    Old 07-18-2014, 10:12 AM   #2
    MiaBelle
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    Re: CRPS moving... Oh no!!

    Has anyone had sympathetic nerve blocks stop the CRPS from moving?

     
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    Old 08-20-2014, 05:40 PM   #3
    Wiired
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    Re: CRPS moving... Oh no!!

    I had about 20 nerve blocks before I gave up on them. In the past 3 years my RSD has spread slowly from just my shoulder to an entire quadrant of my body, so I don't think that the blocks really did anything to prevent that, at least for me.

    My stim wasn't doing the trick, so I didn't make it past trial. They too wanted me to stop all meds - that wasn't happening...

    I wish you luck in your treatments, hopefully you find relief. Personally it took me relocating to Colorado to make any real progress.
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    Old 08-22-2014, 06:14 PM   #4
    LovesTerriers
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    Re: CRPS moving... Oh no!!

    Quote:
    Originally Posted by MiaBelle View Post
    Has anyone had sympathetic nerve blocks stop the CRPS from moving?
    I, too, had no luck with sympathetic nerve blocks (had 8 of them). In fact, the last block actually caused the CRPS to spread to my back. My doctor (who was doing the blocks and spread the CRPS to my back) tried to talk me into a stimulator, but I refused, given all of what I had read and researched....seemed liked there were more cons than pros. In addition, I have a 2 level fusion in my back with 6 screws and 2 rods, which would further complicate the surgery and placement.

    I am truly sad for what you are going though and hope you get some relief. Luckily I found a new pain management doctor who actually listened to me and my concerns. That's when I decided to try the route of ketamine (both IV and oral) and so far it has been the best solution for my pain. My prayers are with you.

     
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