I had a SCS implanted in my neck at my C2-C3 area to help control my CRPS pain in both my hands/arms in Oct. 2023. It’s been a game changer. Luckily I knew enough to insist that my surgeon place the paddle and not the leads since the leads have a tendency to move. I also insisted on a battery that didn’t need charging because I know that there are times it can take up to 6+ hrs to fully charge as the battery ages. Although that depends on how much energy you use. I use very little according to my rep. because I found a setting I liked and I leave it there all the time unless I’m in a flare. But even then I only turn that setting up to where I can actually feel the vibration and leave it for about 20 mins and then put it back to where it was. That usually helps to calm the pain from the flare down for a bit.
I unfortunately did not get to choose which device I received as the hospital only worked with Boston Scientific. It’s a great stimulator, don’t get me wrong, but I really wanted a device that I could control with my phone and this one doesn’t. It has a smallish but clunky remote that I have to haul around everywhere.
I am also grateful that I am able to get MRI’s with this device as I know the older models you can’t. I also have Ehlers Danlos and many of its co-morbidities so I tend to need MRI’s often.
But all in all the SCS has given me so much of my life back. Before it I couldn’t use my right hand at all due to pain and my fingers being stuck in a claw position due to being diagnosed late and not getting into occupational therapy soon enough. I developed CRPS in my left hand/arm after having my ulna bone shortened because it was too long and kept tearing my TFCC. Luckily I got into OT right away so I have full use of my left hand unless I’m in a flare.
None of the procedures worked for me either. I'm not a candidate for a stimulator because of the hardware from my double fusion. I will be having a Sprint PNS implanted on the 22nd. I pray it works because the doctors told me that's my last option. Most days my pain is 8 to 10. I can't stand or walk for very long.
A pain pump was never offered. Pain pills don't work for me. The Sprint PNS is an implanted wire with a pulse generator on my back that supposedly changes brain waves so my brain won't recognize pain signals.
Good luck with your stimulator! After having a failed back surgery and seeing a Mayo doctor I found out I have a screw loose from my lumbar fusion. I was recommended to get a stimulator instead of fixing the loose screw. So what stimulator has everyone tried and found successful for the lumbar . I also need neck surgery but was told by the doctor not to, does the lumbar stimulator also help with the neck.
I have had several adjustments to focus on different areas in my back and nothing seems to work. The trial gave me 90% relief - maybe because I wanted it to work so badly? My pain varies between 7-10. Tylenol sometimes gives some relief. Low dose oxycodone just made me dizzy.
I wonder if taking this one out and trying a different one in would make sense?
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I had a SCS implanted in my neck at my C2-C3 area to help control my CRPS pain in both my hands/arms in Oct. 2023. It’s been a game changer. Luckily I knew enough to insist that my surgeon place the paddle and not the leads since the leads have a tendency to move. I also insisted on a battery that didn’t need charging because I know that there are times it can take up to 6+ hrs to fully charge as the battery ages. Although that depends on how much energy you use. I use very little according to my rep. because I found a setting I liked and I leave it there all the time unless I’m in a flare. But even then I only turn that setting up to where I can actually feel the vibration and leave it for about 20 mins and then put it back to where it was. That usually helps to calm the pain from the flare down for a bit.
I unfortunately did not get to choose which device I received as the hospital only worked with Boston Scientific. It’s a great stimulator, don’t get me wrong, but I really wanted a device that I could control with my phone and this one doesn’t. It has a smallish but clunky remote that I have to haul around everywhere.
I am also grateful that I am able to get MRI’s with this device as I know the older models you can’t. I also have Ehlers Danlos and many of its co-morbidities so I tend to need MRI’s often.
But all in all the SCS has given me so much of my life back. Before it I couldn’t use my right hand at all due to pain and my fingers being stuck in a claw position due to being diagnosed late and not getting into occupational therapy soon enough. I developed CRPS in my left hand/arm after having my ulna bone shortened because it was too long and kept tearing my TFCC. Luckily I got into OT right away so I have full use of my left hand unless I’m in a flare.
How do I do the PM to you on this site?
Glad to do it.
Sorry to hear that. What is a Sprint PNS?
Whatever it is, I will pray that it gives you some relief. I guess the pain pump is not an option either?
A pain pump was never offered. Pain pills don't work for me. The Sprint PNS is an implanted wire with a pulse generator on my back that supposedly changes brain waves so my brain won't recognize pain signals.
Thanks for the prayers!
Go to my message and click on my name in blue above
then click on private message
Got it. Message sent.
Good luck with your stimulator! After having a failed back surgery and seeing a Mayo doctor I found out I have a screw loose from my lumbar fusion. I was recommended to get a stimulator instead of fixing the loose screw. So what stimulator has everyone tried and found successful for the lumbar . I also need neck surgery but was told by the doctor not to, does the lumbar stimulator also help with the neck.
I don’t think so.
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