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Hi, I have had numerous surgery on my foot and leg with has resulted in me having CRPS. I have seen so many different consultants. My pain consultant wants me to have neuromodulation or a spinal cord stimulator. I’m obviously very scared about this and I didn’t want them messing about with my back. I want some advice if anyone has had this done please? Last resort! 

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    Hello, I had the spinal cord stimulator trial for 7 days last year and I wished I hadn't. They do a trial first to see if it helps and you make the decision to stop or go ahead with a permanent one. Mine was terrible for me but there are a lot of people that it helps. You can do the trial and see if it helps, if it doesn't tell them you don't want it. Good luck.

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  • Posted

    Hi Joanne-

    Let me start off by saying I have been around the block with this nightmare several times and Im so sorry to hear your having a rough time. I have whole body RSD and have had 27 blocks, 2 tens units, SCS implant, and Neurol testing for MS. They tried everything to stop this monster.  Have you had success with blocks, does the tens unit work for you? These are very important questions because it indicates whether certain treatments will work for your body. Each person and each case is different so there is not blanket treatment for this thing. If the blocks have worked continue them. If the Tens unit works well then you may be a candidate for SCS. SCS was never developed for CRPS/RSD patients with wide spread pain treatment. if its localized to only your leg it may work. If you decide to try the SCS, tell them you want to try the trial unit first, its a temporary unit. the leads are under the skin but the unit is taped to your body and usually lasts 3-4 weeks. if it preforms well, have the permanent implant if not, have it removed. 

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    I would like to add. the best therapy in the world that I have found was Hot Water Physical Therapy every other day and BioFeedback.
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