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Has anyone else with a SCS experienced this?

dorismithddorismith Posts: 4
edited 06/11/2012 - 9:01 AM in Spinal Cord Stimulation
Hello. I am new to this site and am wondering if anyone else has had similar side effects?

To give a little bit of background, I have L4-S1 fused. I have had all of the hardware in my spine removed and have had the SCS for just over one year.

A couple of months after having the SCS implanted I started to have difficulty regulating my body temperature. When it first happened this only occurred once every two weeks. Now it is almost daily. I become absolutely freezing, I start to shake, my joints starts to hurt and it physically hurts to move around.

My Neurosurgeon says she has never heard of anyone with a SCS experiencing this but I am not so sure. If there is any way the SCS is causing my issues I want it removed immediately.

Thank you for your feedback in advance!


  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    I know it may sound silly but have you had your blood levels checked?

    I have hypothyroidism and the cold and really any temp change through me into a tizzy.

    Other hormones could also be involved that could cause similar effects.

    Just thinking outloud.


    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • D,

    I should have also included that my PCP has checked me for everything under the Sun and sent me to every known specialist. No one has come up with anything.

    Thank you for your reply :)
  • I just had the scs implanted about a week ago, I do feel temp change in my legs but thats not unusual with nerve damage,

    Have you tried leaving the unit off for a while and not use it and see if your symptoms clear up posibly?

    Unless your body is rejecting the implant i am not sure how else it could be related,

    Your dr never said some people might reject the implant and will have such symptoms?
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Alex,

    My Doctor said she has never heard of anyone with the implant having such symptoms but I have always been medically unusual.

    I am doing a test of 3 days off, 3 days on a low setting and 3 days on a higher setting while keeping a journal. I figure after a month or so of this I will be able to see if the stimulator is the cause. I just thought I would see if anyone else is in the same boat in the mean time.

    Thanks and good luck with your unit!
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    A bizzilion years in school ..... $300+ an hour ... and all's they can come up with is "I don't know"!!

    Thats why its called practicing medicine instead of performing medicine. - "Performed Surgery?" more like =Cut and pray!!


    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • Well without jumping in to having it removed as you said, I would shut it down and wait see if symptoms clear up all together,

    If you are willing to have it removed then you should not have any issue just shuting it down for a few months if needed before jumping the gun,

    You should know after a month or even few weeks if its from the stimulation or not,
    And if it stays off for a few weeks and symptoms dont change then its still posible body is rejecting the implant and body is fighting it,

    3 days on 3 days off will never totaly tell you if its the stimulation causing it or the implant, I would think a min of a week or 2 it being off might,

    Good luck,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Alex,

    Thank you for your suggestion. I will try going longer with each step to see if that makes a difference.

    I may also put another call in to my Neurosurgeon to see what rejection would possibly manifest as.

    I am certainly in no rush to have another spine surgery but need to get to the bottom of my symptoms.
  • We had a previous member with an SCS who suffered with a similar issue. She had multiple tests, all to no avail. Wasn't until she was doing preop workup for a second SCS that she found she had a horrible bladder infection. If I remember correctly she became septic and passed away shortly there after.

    Not saying this is what your problem is, just letting you know about a similar experience someone else with an SCS had.

  • I have had this but just the opposite I get too hot.... I have to keep my AC on 66 or I'm sweating has anyone heard of this? If it is hotter then like 67 I can't sleep...
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