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Spinal cord stimulator removal anyone?

Posted by jaxonsgigi @jaxonsgigi, Jul 10, 2024

CRPS, fibromyalgia, and Small Fiber Neuropathy sufferer. Had a Spinal Cord Stimulator implanted in my 2nd, 3rd and 4th vertebrae and unfortunately I was unable to ever use it, it made my CRPS much worse. I’m scheduled for removal surgery but would love to talk to someone who has gone through the same. I’m told this is a really tough situation because of the placement being in my upper neck. And y th hey took a lot of bone when putting it in and on top of that I have osteoporosis. I’m getting really nervous and the reason besides not being usable is I need to get MRI done and you can’t have any imaging like that when you have a SCS. Anyone gone through a removal?

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brotherchuckles80 | @brotherchuckles80 | Apr 28 4:01pm
In reply to @heisenberg34 "I was talking to a friend who had his SCS trial back in February. He was..." + (show)
Profile picture for heisenberg34 @heisenberg34

I was talking to a friend who had his SCS trial back in February. He was pretty excited because it gave him 90% pain reduction. He had the permanent implant last month. So far he has not experienced any pain reduction. He's going back for another adjustment soon. He's pretty disappointed.
I was wondering, why can a trial go so well and, yet, the permanent implant does nothing. Doesn't seem to make sense. I am hoping to hear your experiences and take on this.

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Please keep having the adjustments made. I believe that in time the adjustments will give you 90% pain relief. God bless you

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heisenberg34 | @heisenberg34 | Apr 28 4:32pm
In reply to @brotherchuckles80 "Please keep having the adjustments made. I believe that in time the adjustments will give you..." + (show)
Profile picture for brotherchuckles80 @brotherchuckles80

Please keep having the adjustments made. I believe that in time the adjustments will give you 90% pain relief. God bless you

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Thank you and you as well!

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carolynhughes75 | @carolynhughes75 | Apr 29 6:28am

Yes, I had mine removed because it wasn't effective and due to the MRI issue. Could your surgeon not leave the catheter in place and just remove the generator ?

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anthony29621 | @anthony29621 | Nov 13 1:02pm

I had mine remove , it was fitted in 2014 , it never worked properly, kept losing connection with blue tooth connection, then leads in my back stopped working, then broke down completely in 2019 and stopped, it was left in my body until 2024 , in which I suffered 2 strokes over it , because the kept changing the settings.. it destroyed my profession work life and my social life .. stay well away from spinal cord stimulator, the companies don’t want to no ,, when it breaks down ..

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anthony29621 | @anthony29621 | Nov 13 1:09pm
In reply to @heisenberg34 "I was talking to a friend who had his SCS trial back in February. He was..." + (show)
Profile picture for heisenberg34 @heisenberg34

I was talking to a friend who had his SCS trial back in February. He was pretty excited because it gave him 90% pain reduction. He had the permanent implant last month. So far he has not experienced any pain reduction. He's going back for another adjustment soon. He's pretty disappointed.
I was wondering, why can a trial go so well and, yet, the permanent implant does nothing. Doesn't seem to make sense. I am hoping to hear your experiences and take on this.

Jump to this post

@heisenberg34
He needs to be very care full , they kept adjusting mine also and drove pain up my neck and around the back of my eye ,, I got mine fitted in 2014 , it kept breaking down, and stopped working completely in 2019, I got 2strokes from there adjustment I asked for it to be set back to original settings, there was a blind eye turned t me .. I never had pain in my neck and eye before I got a stroke in 2022 , and another in 2024 ,,

U need to tell ur friend be very careful, I am convinced they don’t no anything about them ..

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anthony29621 | @anthony29621 | Nov 13 1:11pm

I be knocked out .. u have no worries

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suzanne63040 | @suzanne63040 | Nov 13 1:18pm

I have two spinal stimulators one for my back and one for my neck. They are made by NEVRO. They both have paddle leads that I think are pretty permanent. I think they no longer help me and I would like to get them removed. I was thinking that they just remove the batteries since the leads are pretty much attached to my spine now. I’m hoping that is correct And that it is a simple surgery. As far as being MRI compatible, they are as long as the MRI is calibrated specifically to your implant.

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heisenberg34 | @heisenberg34 | Nov 13 3:11pm
In reply to @anthony29621 "@heisenberg34 He needs to be very care full , they kept adjusting mine also and drove..." + (show)
Profile picture for anthony29621 @anthony29621

@heisenberg34
He needs to be very care full , they kept adjusting mine also and drove pain up my neck and around the back of my eye ,, I got mine fitted in 2014 , it kept breaking down, and stopped working completely in 2019, I got 2strokes from there adjustment I asked for it to be set back to original settings, there was a blind eye turned t me .. I never had pain in my neck and eye before I got a stroke in 2022 , and another in 2024 ,,

U need to tell ur friend be very careful, I am convinced they don’t no anything about them ..

Jump to this post

@anthony29621 Seems like their are two polaopposite opinions on these things. Some say that they were game changers. Others say they were terrible things/experiences.

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gjnick | @gjnick | Nov 14 11:28pm

My daughter had one. Same, never worked properly. The wires dislodged themselves. She got it removed. Hope all goes well for you.

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