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Trial journey

nmacnnmac Posts: 112
edited 06/11/2012 - 8:46 AM in Spinal Cord Stimulation
Yesterday I had the SCS implanted. It took 2.5 hours in the OR and 5 hours total, much longer then I expected. The leads were sending zingers all over my body. I am trying to cover cervical and my left shoulder/arm. They really had difficultly getting directed coverage to my shoulder arm. I had some really INTENSE zingers even to my feet. Didn't really enjoy that. When we got home we couldn't get the stim. to work correctly. We watched the video, read instructions etc. My Rep. met me at a local hospital lobby, gave me new remote, and we worked on getting the stim. in the right areas. Only one lead will work. The other lead zaps my whole body or arms intensely. We reprogramed so I only feel the lead near my spine. Now if I lean my head back the stim. still affects my hands still too much. I have always known that I am wired differently.The surgery pain isn't to bad today. My Rep. thinks the leads might of migrated and whatever signal I have now will probably be what I have to my decision. Probably getting it out on Friday since it doesn't seem to great so far. Hopefully I will get more positive experience tonight and tomorrow. My PM said taking the leads out is easy compared the surgery so I am not worried about it. Thank all for your support. Keep in touch.
Severe DDD. Klippel Feil Deformity. Cervical Foraminatomy that turned into Lamy. I have tried so many treatments, therapy's and medications.


  • With my cervical SCS I get stimulation all the way into my feet. Now depending on how I have it programmed and what position I am in, I can get rid of it if I want. I actually like the extra stimulation since it helps with the pain I have in my legs too. I have good coverage from the sides of my head down through my neck, into the shoulders down my arms and into my hands.

    The trial leads that I had were extremely positional. I didn't get great coverage with them, but good enough to know it was helping my pain.

    Early on and also during the trial, it is very common for the SCS to be adjusted to a setting that is way too high and any slight movement of the head can cause a person to "zap" themselves. I found that by adjusting my SCS to a level that blocks the pain and not any higher, I can get it where it isn't high enough to zap me in a manner that causes me to jerk or twitch.

    What amplitude are you running the SCS on at the moment?

    Hang in there.

  • So sorry that you're having so much trouble. I can't believe it migrated already. I hope you get somewhere with it before Friday. I get my leads taken out tomorrow, so far so good with the stimulator. I told my Neuro that I want to go for it. Take care and good luck!!
  • I am running it at 7 currently. I was only able to feel it at 8.5 initially when the rep programed it. I am having some muscle spasms from being zapped and I think that is what is causing my pain. I think I will try a muscle relaxer and maybe I can get that calmed down. My PM gave me an RX for 15mg OxyContin for my pain. That is much higher dose than I am used to taking. If I take that much I probably will be sleeping in the recliner or throw up. I am starting to feel some of the positive effect of the stim. Hard to say what I will do tomorrow about having it removed or waiting until Monday. Thanks for being here for me.
    Severe DDD. Klippel Feil Deformity. Cervical Foraminatomy that turned into Lamy. I have tried so many treatments, therapy's and medications.
  • Wow, that is a ton of amplitude for any cervical SCS no matter what brand! If I tried to run my SCS on that setting, I would look like someone having a seizure! During the first year I had my SCS, my rep tried programming the signal in the same manner it is typically done for a lumbar SCS. It was a really odd experience because I couldn't even feel anything until the amplitude got up over 5.5 or 6.0. Along with that, I suffered horrible spasms and intense pain in certain spots. Once he dumped that program and developed some that crosstalk between the leads I no longer had the spasms and pain from the SCS and the amplitude was set somewhere between .8 and 2.5. (a shallow and diffused pattern)

    Most folks with cervical SCS's once they are optimally programmed run programs at far lower amplitudes. The dura in the c-spine is thinner than the L-spine and it takes far less power to penetrate for good coverage.

    Hope your trial is still going well.

  • I can't even imagine having my SCS turned up that high. If I'm lying down it's at 1.5 at the highest, and my right leg tends to stay between 3.5-4.5. My left leg is generally at 2.5-3.5. I think my highest ever was somewhere around 5.0!
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