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Cervical pain- now I have a Spinal Cord Stimulator since 2009.

Jan 21, 2015 11:24 PM

Has anybody suffered from a seizures while having the SCS on.

Jan 22, 2015 12:12 AM

I have a neurostimulator implanted at C-1 and when it was working sometimes the stimulation would change if I turned my head or was around things that have off the same frequency of electricity that the stim did. Sometimes it would go so hard that my body would lock up but no seizures. Are you certain that you are experiencing seizures? What happens to your body during these episodes? You may need to have the neurologist adjust your frequency and turn on/off certain electrodes to see if that helps. Sorry I couldn't be more helpful. I've had the implant for several years and had to have 4 revisions due to malfunctions of some kind or another. Migration of the leads and/or electrodes shorting out. Now, it is not working at all and I can't even turn it on. They can't remove/replace it because I have such a horrendous amount of scar tissue they can't get it out without paralyzing me. So, with this thing in my spine and all the wires down my back and the battery, my body just keeps producing more and more scar tissue and you can actually feel the scarring like a 2" diameter rope under my skin. Not to mention what's even deeper from other surgeries causing adhesions and more pain. I hope you find some resolution to your situation.

Jan 22, 2015 1:09 AM

Thank you for sharing. I did have one revision in 2010 because of the Battery location
(left upper buttock) it was so painful I couldn't walk normally I would go to Costco with and now my ex-husband I would lean on the basket because I couldn't hold myself up. The battery kept moving around even when I sit down it was hitting my nerve.This was very painful. So my revision was located in my left upper pelvic area. And now I have 1inch thick scar tissue in my left buttock. The SCS LEDs go from my left palvic around my left side and up my spinal colum to the base of my neck.
When I turn my neck left or right, the stimulator sends harsh impulses to my head. I've spoken to the doctors, they suggested to lower the stimulation. I'm seariously thinking about taking the SCS out.

Jan 22, 2015 11:08 AM

Don't bother to put your body through the trauma of surgery to remove it. If you don't want to bother using it, don't. Surgery will just open the door for more issues to spring up. The reason that happens when you turn your head is because the lead of the SCS being in your neck, there's a lot of room for it to lose its connection to the spine or just the opposite and really jolt you. At least if you leave it, you have the choice to use it if you need to or want to. Mine is still there, as I told you, but I can't even charge the battery any more. (Which like yours, is at the top of my left buttock and moves around alloy causing pain). Good luck, I'm here if you need to chat.

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