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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • RSD/CRPS spinal cord stimulator

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    Old 03-29-2013, 05:25 AM   #1
    snowman2
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    Unhappy RSD/CRPS spinal cord stimulator

    Hello have any of you out there had the SCS put in and how is that working for you i will be going through the trial period where they fish the leads up your spine and leave the device out while one is seeing if stimulation is helping and after 7 to 10 days if the device is helping then they will install the device permenantly this all sounds so scary but i cant take the pain any more its there always and i want to be able to go out and not have a flare ups from RSD everytime i do something any feed back will be appreciated snowman2

     
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    Old 03-29-2013, 03:02 PM   #2
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    Re: RSD/CRPS spinal cord stimulator

    I haven't had the stimulator for myself but my girlfriend also has RSD (she has been my lifesaver with this stupid disease!) and it worked for her for awhile but it seems like with this disease, nothing works permanently. So I have to ask, is your pain the deep aching pain, the nerve shots that feel like a lightening bolt going up your leg, or the sensitivity to touch...or all of the above? I get all of these but not all of them at the same time. I'm just wondering if you have the skin sensitivity all the time or on and off. I'm confused for myself on that one because I get the sensitivity but it doesn't stay that way all the time. Just wondering if you did or not.

     
    Old 04-11-2013, 04:42 AM   #3
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    Re: RSD/CRPS spinal cord stimulator

    Quote:
    Originally Posted by jewlz67 View Post
    I haven't had the stimulator for myself but my girlfriend also has RSD (she has been my lifesaver with this stupid disease!) and it worked for her for awhile but it seems like with this disease, nothing works permanently. So I have to ask, is your pain the deep aching pain, the nerve shots that feel like a lightening bolt going up your leg, or the sensitivity to touch...or all of the above? I get all of these but not all of them at the same time. I'm just wondering if you have the skin sensitivity all the time or on and off. I'm confused for myself on that one because I get the sensitivity but it doesn't stay that way all the time. Just wondering if you did or not.
    I don't have the sensativity all the time it comes and goes , but I have this constant deep pain that is there all the time and I've been keeping track of my condition it's like I'm only good for a couple of hours and if I do more than that in lit up like a Christmas tree and them I get a flareup that last on average about 3 hours its this viscous cycle that I'm in and I can't get it to stop I've not been on board with the SCS because it may work or it may not but when I was talking to the rep one day while I was in recovery from my SGNB she said if it doesn't work you can have it removed that's the beet thing about the trial it's just temporarily put in if you like it then they go ahead and actually put the device in so I figured what have I got to lose . I can't walk like I said for more than a couple of hours or I suffer this is not a good situation for me I don't feel like I'm doing everything I can I hate this , I want to be able to walk and go out with my wife and do things so I'm going to at least do the trial of the SCS and see if it makes a differance . I'm only getting worse when I look back on what I've done things are not working anymore like they used to I went into a remission last year for about 4 months not totally I still had to watch myself and medicate but it was bearable now it's like nothing lasts anymore and I am retired now and want to try this seeing I have the time I would give anything to feel good and walk again I have to try this snowman2

     
    Old 04-29-2013, 07:57 PM   #4
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    Re: RSD/CRPS spinal cord stimulator

    I had the SCS done and I'm glad that did. It knocked my constant 10 down to a 5 most of the time. The only bad part is that you have to turn it off when you drive and I drive a lot, so I'm constantly irritated. Also, my RSD had spread into my hips and back from the surgery and stress, but I still don't regret it because I feel that this would've happened anyway and I would rather feel a 5 than a 10. Im glad that I did it and who knows, maybe it will work even better for you! Everyone is different, that is what we have to keep telling ourselves. The truth is, if this is the next step and you get a trial period, what have you got to lose by trying? I hope it works and please keep us posted!

     
    Old 06-14-2013, 04:48 PM   #5
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    Re: RSD/CRPS spinal cord stimulator

    I've heard that many people are helped by it, but I don't have any personal experience with it.

    Any updates, snowman2?

     
    Old 06-16-2013, 05:08 AM   #6
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    Re: RSD/CRPS spinal cord stimulator

    Quote:
    Originally Posted by afb004 View Post
    I had the SCS done and I'm glad that did. It knocked my constant 10 down to a 5 most of the time. The only bad part is that you have to turn it off when you drive and I drive a lot, so I'm constantly irritated. Also, my RSD had spread into my hips and back from the surgery and stress, but I still don't regret it because I feel that this would've happened anyway and I would rather feel a 5 than a 10. Im glad that I did it and who knows, maybe it will work even better for you! Everyone is different, that is what we have to keep telling ourselves. The truth is, if this is the next step and you get a trial period, what have you got to lose by trying? I hope it works and please keep us posted!
    Thank you yes this is where I'm at and dealing with a constant 8 pain is miserable so if I can at least get 50 percent help for my pain and live a better life and be able to cut back on pain medicine it sounds like a win win I really want to get this going and thank you for the positive feedback snowman2

     
    Old 06-27-2014, 05:09 AM   #7
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    Re: RSD/CRPS spinal cord stimulator

    My husband just finished the trial. It worked well for his CPRSD, but he doesn't like being jolted when he coughs, or moves wrong and is very hesitant to have it implanted. He said it was very uncomfortable to sit down too. I guess I will leave it to him to decide if he wants it. It is really hard for me to watch him be in pain especially when he was close to pain free when he had the trial. Please give me some feed back to which of you have the implant now. How long was it after surgery you were out of bed after the unit was implanted? What things can't you do? My husband works in a warehouse lifting 50 lb bags repetatively and he is afraid he won't be able to do that anymore.

     
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    Old 06-27-2014, 10:12 AM   #8
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    Re: RSD/CRPS spinal cord stimulator

    Quote:
    Originally Posted by SloRian View Post
    I've heard that many people are helped by it, but I don't have any personal experience with it.

    Any updates, snowman2?
    Hi I have recovered from the SCS that was implanted back in feb but its only helping about 25 percent was it worth it yes as I have yet another tool it's been a tuff 6 months but summer is here finally so hoping to get out and enjoy please message me on private message anytime I get those notifications and can respond ASAP hope your doing well and thank you for asking about me

     
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