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Spinal cord stimulator support
I recently had a spinal cord stimulator implanted and would love to hear from others who have one and their experiences.
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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.
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Please get assist from OT specialist to prevent falls! So prone to balance problems due to meds you are using. Balance practice helps. About 25 yra ago I had weird leg pain When my dog's tail flicked across back of knee my leg collapsed. 3 Orthospedists only did X ray and 1st 2 said OLD AGE SCIATICA
At 54 I did not accept. 3rd came at me with big needle to cure my Baker's cyst. I was on Mcaid so geot $ from family for scan Solid mass found on my sciatic nerve behind knee. My bipolar diagnosis was in patient history. They thought it was imagination. Rare benign tumor on that nerve removed early before it caused pain by penetrating nerve and preserved my leg.. I later developed foot neuropathy Got Nevro device that usually has worked 100%. Right now a glitch in relief Working on adjusting device. Prejudice of professionals against those with MH diagnosis is real. Especially with age and complex symptoms. Self advocacy works but difficulty finding answers. Started having carpal tunnel, confirmed by EMGs and scheduled for surgery later that month. In 3 weeks it disappeared again. When a technician did long set of tests re foot neuropathy a 2yrs later the doctor who observed foot tests advised me to see a neurosurgeon for my carpal Tunnel in left arm. Had NO CT symptoms. Three wrong solutions for real pain issues. I could have had many Rxes prescribed for these issues. Only needed briefly waiting for hip replacement 3 yrs ago. PT and non pill pain relief like Lidocaine have helped what SCS does not . Similar to Mayo Connect years of support of peers for bipolar with DBSA group helps self advocacy. Knowing workings of your own body essential. Persistence matters.
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1 ReactionThanks @julkun. If insurance approves the procedure, I will be getting the permanent implant. So, the odds are against me in that regard. Even if approved, there are no guarantees that the neurosurgeon will be able to remove enough scar tissue to get the lead in the sweet spot. Then, there's the question of whether the device will give me any real relief. At this point I can't sweat it. God is in control. I am completely in His hands.
Thanks for your kind words. I hope and pray that your trial is a smashing success.
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.
Please PM me your phone number. My procedure is Wednesday. I'd like to talk with you before and after the procedure. Thanks for your support, Jules
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