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SCS, RSD Questions

monibmmonib Posts: 102
edited 06/11/2012 - 8:38 AM in Pain Management
Ok...several years ago I was diagnosed with RSD. It was painful and took so much to get it under control. I had paperwork filled out for my disability insurance and the reason for the SCS was Chronic pain and RSD. My RSD was in my left leg.

Here is the problem. My SCS was working great and is still covering the pain...but for the last 3 days it has cramped my left leg (one with RSD). I don't feel any stimulation in that leg just a cramp that is worse when I am sitting or laying. My SCS is on a cycle 30 on 15 off. There are times I can't wait for the 15 off to get the cramp out of my leg. Could this be a result of the RSD? Is the RSD getting worse? I will ask the doctor all these questions but thought maybe someone here could answer.

I don't know if this is correct or not and I don't remember where I heard this...but does RSD lay dormant in your body and have flares? This cramping is just crazy. I have turned the SCS off and pain returns within 15 minutes and it seems worse than before. Does SCS work for RSD? Can it make the RSD worse? Any help would make my questions for the doctor easier.


  • The SCS is known to help with quite well RSD and some critics have said that it will eventually become ineffective for treating RSD. There's really no specific long term study that states where that came from and I think it's like a lot of other information on the Internet, unless the source can be verified as credible ... well you get the picture. So if you research this on the Internet, just be wary of the information source.

    What I am wondering is whether you have a lead malfunctioning or not. Depending on what type of lead/s you have and how they are configured to fire, they can cause intense spasms and intense deep pain to occur.

    So did the stimulation just suddenly drop off without any changes made to your programming?

    What brand and model of SCS do you have?

    Have you contacted your rep yet?

    Did you do any kind of activity that you haven't normally been doing?

    Have you gotten any strange messages on your patient programmer that you use to make adjustments to your SCS with?

    Is the cramping "positional" at all? In other words, is it brought on by any specific position you may sit, stand or lie down in?

    Hang in there and you will get to the bottom of this!

  • Cramping is very positional. I am almost 8 weeks post op and it was good for about 4 days after programming and then all of a sudden it is a jolting cramp. I have paddle leads...and no they don't think migration could of happened...but who knows. I have and ANS unit and I am calling the rep today but will most likely be wed before I can get in. Very long trip for me and I am working 16 hour days. I did do a little lifting so maybe migration is something to look at.
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  • When you sepeak to your rep, ask if there's a way that you can use your patient programmer to test the connectivity of your leads.

    With my Medtronic patient programmer, I can actually test the leads and the contacts on each one, which helps tremendously in finding the problem.

    Sorry I couldn't have been more help.. Make certain that you tell you rep it is positional.

  • Did you say you have had your stimulator almost 8 weeks? If so you should be scarring in good and that can change the stimulation. Or it could have migrated and is to close to a nerve causing this cramping problem.
    I have an ANS and have been going over my ANS handbook, as I am sure you have been doing,and the only thing I can find is that undesirable changes in stimulation can occure IN TIME. But you have not had yours that long for this to occur yet.

    I know someone who had a failed trial because the stimulator caused horrid cramping and they thought the lead may have been to close to a nerve.
    Sorry I can't be more help. I do hope you find relief soon.
    Patsy W :H

  • Ok I read a bunch and I really don't think migration is a concern...I will talk to the doctor about it. But from reading...please correct me if I am wrong...migration with paddle leads after 4 weeks is almost impossible by lifting such little stuff and following all other restrictions to the tee. Yes my lead is right over a nerve root...and I have changed so much from the first day after surgery. Rep told me I was very swollen and until that went away I would feel changes. I didn't think I would feel this though. I have a call into her, she is in surgery right now and will call me back ASAP. I know she will be able to help. And if it is migration at least insurance will pay.
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  • Reprogramming can do wonders. My ANS rep told me i would probably need reprogramming at least once a month for awhile. I had my left lead migrate slightly last week. I lost total stim in that side. Reprogramming was able to get it back luckily. Hopefully it will not migrate again. My implant was done on 8 July 09. Have your rep try different pulse widths to see if that will take the cramping out. My last reprogramming last 1.5 hours. Rep would not give up until it was right.
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