Spinal cord stimulator support

Posted by robyng @robyng, Mar 27, 2024

I recently had a spinal cord stimulator implanted and would love to hear from others who have one and their experiences.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Profile picture for daxel79 @daxel79

You’re so very welcome 🩷 I’m sorry you’re going thru this as well. My PM Dr is such a jerk, he dismisses me every time I see him, never believes me. I’m desperately trying to find a new PM Dr😢

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@daxel79
I pressed the issue pretty hard , so did my wife. I did convince my PM doctor enough that he gave me a live XRay . Things are still up in the air but I am 99.99% sure my issue is the Stimulator.
I will have to make the decision soon because the longer I have it in the more scar tissue they will have to cut through. Hope you can find a more compassionate doctor, I feel for you.

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Profile picture for daxel79 @daxel79

I’ve had the Nevro HFX 10 for two years now to try to help control my CRPS Pain. It has caused more problems than it has helped. Has created severe lower back pain because I have to constantly arch my back to get it to work, they only works if I’m laying flat on my back when I try to sleep I can no longer sleep on my sides, it seems to be aggravating my CRPS nerve pain more than it’s helping. I have constant muscle spasms along my spine where the leads are. At my next doctors appointment I’m going to talk to them about having it removed.

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@daxel79
We already connected, but i applaud your decision given your issues. I know you will find a surgeon well conversed with removal. My new pain Dr was furious she didnt get to do it...receptionist error but worked in my favor. Along with the spinal canal bled, hematoma, scar tissue i also needed a laminectomy, have yet to find out if that was Stimulator related. The swelling/ scarring tissue from my battery pack was massive and excruciatingly painful. Im meditating a lot and ' dissolving ' it in my brain. I dont know how much the body can absorb the scar tissue but I find meditating does ease that pain.
Good Luck...keep us posted❤️

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Profile picture for smithki @smithki

I had an Abbott pain stimulator installed this year, I am 3 months in and not only am I in more pain but it seems it was the tech’s responsibility for a failure to correctly manage pain. On my last visit to the second post op visit with pain management and the Abbott Rep, they set my unit to the burst program on number 12. Not given clear instructions on how to set it I just left it on the setting that the Rep set it on.
3 months having the unit off and on I have developed nerve pain in a very embarrassing part of my body( If you know what I mean) I went back and told the pain Doc and a different Rep. the nerve pain issue that has literally altered my life, from my sleep and intimacy. They took a live X-ray of my back and said the lead wires were in the right spot but they were very much stumped on my constant nerve pain. After the X-ray the other Rep. that was not there at surgery , stopped me outstide and asked me question. The thing I told her was that I concluded the unit is hurting me .
When I turn it on I begin to have new places it burns very bad. Now it is painful all of the time. The Rep. told me to set the controller to 3 be cause 12 is way to high. Then she made a comment about stimulators set to high can burn nerves.I believe that is what has happened and now I have the same burning day and night with the unit off. I have an appointment to talk about where we go from here. If damage has been done because of the stimulator , it will be coming out and we will be talking what can be done . I would say between the Rep and the unit itself , there is some things needed to be said and done, not sure what that will entail. Has anyone had these issued????

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@smithki … I had Metronic stimulator fitted .. removed now thank god .. I got 2 strokes out of it and can’t work .. over it ..

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Profile picture for rivermaya34 @rivermaya34

@plakermike88 Hello friend! Yes, I do! I'm actually going to soon be getting a second one (or dual - but, both are Boston Scientific brand). My local team is great! Do you use the MySCS app, by chance? If not, I would advise it. It has very useful information, including your team members' contact info, ID card, tips, etc. I've had mine for 3 years now and I LOVE it! It has eradicated 85% of all my upper body pain, but I still need a second unit to address my lower body pain. Do you have any specific questions you want answered? I'd be happy to chat with you, if so. Feel free to PM me. 🙂

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Thank you for your experience, yes it was helpful information. My team that I have for the most part is there for me. I have a recharging stim. And the patches that I use doesn't stick to me, do you have this kinda problem?

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Profile picture for plakermike88 @plakermike88

Thank you for your experience, yes it was helpful information. My team that I have for the most part is there for me. I have a recharging stim. And the patches that I use doesn't stick to me, do you have this kinda problem?

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@plakermike88 Oh good, that's wonderful!! Mine is recharging also. Yes - sometimes they don't bc my stimulator "sticks out" of my back and sometimes my skin is too oily, so a little alcohol goes a long way. If it's during the day, I'll use the battery belt they gave me and it works fine to keep it in place. At night, I'll use the sticky pads and lay on my stomach with it uncovered so there's no barrier to make it overheated or cause slow charging.

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Profile picture for anthony29621 @anthony29621

@smithki … I had Metronic stimulator fitted .. removed now thank god .. I got 2 strokes out of it and can’t work .. over it ..

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@anthony29621
Wow!!! A stroke? The more I hear others experiences with these stimulators the more convinced I am to get it out.
How long did you have yours in and was the surgery to remove it as bad as putting it in?
Thanks so much for sharing

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Profile picture for anniesezu812 @anniesezu812

@daxel79
We already connected, but i applaud your decision given your issues. I know you will find a surgeon well conversed with removal. My new pain Dr was furious she didnt get to do it...receptionist error but worked in my favor. Along with the spinal canal bled, hematoma, scar tissue i also needed a laminectomy, have yet to find out if that was Stimulator related. The swelling/ scarring tissue from my battery pack was massive and excruciatingly painful. Im meditating a lot and ' dissolving ' it in my brain. I dont know how much the body can absorb the scar tissue but I find meditating does ease that pain.
Good Luck...keep us posted❤️

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@anniesezu812
Wow!!! These things seem to be a nightmare. I am definitely getting it removed before I have more issues like so many do. Presently I have mine turned off because it was creating more pain, even set on no. 1.
I am almost certain that I fried some nerves with it being set to high. The Rep. set it on my last post op appointment 2.5 months ago and have had nothing but pain since.
I am really glad so many of you are telling your experiences, thank you.

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Profile picture for anthony29621 @anthony29621

@smithki … I had Metronic stimulator fitted .. removed now thank god .. I got 2 strokes out of it and can’t work .. over it ..

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@anthony29621
Hi Anthony, I have a question.
Will insurance pay to have the stimulator removed. I believe I have good cause for the removal but not sure my pain doctor sees it like I do.
thanks

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Profile picture for rivermaya34 @rivermaya34

@plakermike88 Oh good, that's wonderful!! Mine is recharging also. Yes - sometimes they don't bc my stimulator "sticks out" of my back and sometimes my skin is too oily, so a little alcohol goes a long way. If it's during the day, I'll use the battery belt they gave me and it works fine to keep it in place. At night, I'll use the sticky pads and lay on my stomach with it uncovered so there's no barrier to make it overheated or cause slow charging.

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I'll try that, thanks! I'll let you know how it goes, if that's ok.

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Profile picture for plakermike88 @plakermike88

I'll try that, thanks! I'll let you know how it goes, if that's ok.

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@plakermike88 Of course it is! If you were local, I'd give you my extra belt. But, you can request they send one to you for free.

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