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Spinal Stimulator felt after turning it off

mombiz4mmombiz4 Posts: 3
edited 06/11/2012 - 7:49 AM in Spinal Cord Stimulation
Has anyone ever had this happen. In the last week, when I turn my stimulator off , I still feel mild vibrations about every 2-3 minutes. I saw Dr today and he did xray to make sure nothing had moved.Boston Scientific's rep did some reprograming and thought that might stop it but it's back.
I'm supposed to call my Dr back in a week if it doesn't stop. It doesn't hurt but it's annoying and I know it's not suppose to do it. I've had it 5 years now.
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Comments

  • I absolutely do still feel it after turning it off. I think in my case it is all mental and not really stimulating me, but I use it in the "on" position for weeks on end, so when it is turned off on occasion, I can still feel some phantom vibration from it.
  • I am totally baffled by folks who say they feel the stimulation once they shut off their SCS. As soon as I turn mine off, it's like flipping a switch. Off means off to me and nothing in between. I leave my SCS running constantly.

    There are those who claim they still feel it once it's shut off. I guess they are the lucky ones ... it would certainly prolong battery life!

    "C"
  • I always felt a little tingling right after I turn it off and it's always gone away. But this is different. Right before it started doing this, I got a severe pain that raditated to the groin area. Worst pain I've ever felt. So maybe something else is going on here
  • I'm with "C" on this one. Although it should be noted that the Medtronic Stimulator has delay when changing programs and turning it on or off. This is a safety mechanism so the patient can be prepared for the change in stimulation.

    Dave
  • Mombiz, a month or so ago, one of my programs went "haywire" and was sending very painful jolts down my left arm and into my hand. This occured while the stimulator was "on" and I had to stop using that program completely until I could meet up with my rep. Before I could even set a time to see him, my stimulator stopped completely and would not turn back on. In the end, they have determined that some of my contacts have gone bad and that particular program was using those contacts. Unfortunately the only way to find out what has come loose or what is wrong requires surgery because they couldn't see it on the xrays they took, but they were able to program around the problem areas and get me the stimulation I need for now. But it might be worth having your rep analyze to see if everything is working properly. I have the Boston Scientific Precision Plus and mine is a paddle vs individual leads.
  • Thanks Honeysmom! I have prescision(previously Advanced Bionics now Boston Scientific). The rep changed my programs on yesterday. It did seem to reduce the occurances. If they continue BS is going to send out their engineer to investigate. At least now I don't feel like it's mental. Lol
  • I ended up seeing the engineer who got new xrays and did a thorough analysis of my unit. She is the one who was able to get it started again and reprogrammed it. I will be interested in hearing what resolution they come to with yours.
  • I call it phantom stim and almost always have it, although the intensity varies. For me, one thing that causes the intensity to increase is doing things that are on my "stupid" list. I do something stupid, cause a load of inflammation at my paddle site, and the intensity and duration of the phantom stim increases dramatically. A few Advil later, it goes back to the normal levels.

    When I had my trial in place, it was really bad, to the point that my doctor sent me to the ER to have things checked out. They pulled my trial leads and did an MRI, which showed swelling edema around my spinal cord where the trial lead was sitting. My doctor said it was - once again - me doing too much, too soon. At that time, with the trial lead being so much more positional, I really inflamed the area, which caused the swelling and edema.

    I try hard to be sensible and stay away from the "stupid" list, but I fail more than I succeed. LOL! I have to admit, though, on days when I've really tuckered myself out, I welcome that phantom stim at bedtime, I can't sleep with my stim on, so the phantom stim helps me doze off... :-D

  • My Neuro and Pain doc both said it was residual from my body getting used to the signals through the nerves. It does make for a strange sensation when I turn it off.Then again I have only had it in for a month so I have alot of time to feel out what this thing can do.
    Live one day at a time and do it with no regrets. I hold my head up high with pride to the fact that i wont let my injury beat me.
    Lumbar surgery 2009
    Cervical fusion C4 to C7 2009
    Neurostimulator 2010
    Heart ablation 2011
    Lumbar fusion L4 to S1 2012 and now L1 2 3 and 4 are split and bulging.
  • I was just wondering if there was anything that could not be done with the stimulator. I read somewhere that driving is hard. My doctor is thinking about this for me and I am trying to figure out pros and cons. Thanks. Michelle
  • Between my trial and permanent implant surgeries, I felt something like continued stimulation at a really low vibration even though my leads had been pulled. I also felt like there was a bubble that would float inside my spinal column, even higher than my trial leads had been. My doc ordered a stat MRI, put me on antibiotics in case it was an infection, and eventually the sensation passed.

    When I had my psych eval before the permanet surgery, I mentioned it to Medtronic's psychologist who casually replied "yes, that's the shadow effect. It's been documented for years."

    So- I am now 20 months out and loving my stim.
    Mack
  • nowasober1 said:
    I was just wondering if there was anything that could not be done with the stimulator. I read somewhere that driving is hard. My doctor is thinking about this for me and I am trying to figure out pros and cons. Thanks. Michelle
    Michelle, I have not found anything that cannot be done...I just have to be careful. When I lay down, I have to turn my stim down a bit (if it is on a higher setting) as changing position increases intensity for me. But other than that, I still drive, am now working....it helped me LIVE my life. I am careful not to bend, lift or twist within reason....I am very careful and will always be.

    On the subject of this thread, I feel phantom still ALL THE TIME. In fact, the other day I realized my SCS was WAY low and my remote wasn't even working. Because I wasn't home and couldn't get home for an hour, panic set in as I wondered - had it already shut off and what I was feeling was phantom stim?

    Boy was I glad to get home, charge it up for a bit and then my remote started working/reading it. Guess it got WAY too low.

    I appreciate the phantom stim! lol

    Cheri
  • Reviving an old topic here but I also have stimulation after turning off my unit. The current program I'm using is for my left leg and back, no stimulation on the right side. When my SCS is turned off I have stimulation in my right leg and foot, it's not intense but it's definitely there, more so if I'm in an upright sitting position or if I tilt my head down. Has anyone else experienced this and received resolution on the problem? If so what was the cause? Thanks

    -Shawn
    Microdiscectomy/Laminectomy/Foraminalectoy L4/L5/S1 Oct 2009, Mar 2012
    Laminectomy L4/L5/S1 Dec 2009, Oct 2012, Dec 2012
    Microdiscectomy and Synovial Cyst removal Feb 2013
    St Jude Spinal Cord Stimulator implanted January 2014

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