r/spinalcordstimulator

Hello, I’m a healthy 62M with idiopathic axonal neuropathy in my feet and legs. Tingling started 11 years ago, and is up to my thighs. Pain started 6 years ago, and is up to shins. Tingling has begun in my hands.

I can barely walk or stand, and the only comfortable place is a recliner, usually 23 hours a day in it. Pain gets worse everyday, and the meds either put me to sleep, or I don’t take them so I can focus on something and have pain.

My pain doc has said he didn’t want to increase my opioid dosage until I tried the SCS, but I have concerns about its safety and efficacy.

So, does anyone have success stories with SCS for neuropathy? I’m at my wit’s end with the constant pain and am almost ready to do the trial.

Thanks!

I am looking at SCS and have done as much research as one can - part of the issue is there are not many (if any) studies conducted looking at efficacy of an SCS over the long term that I can find (as in past 5 years). I understand the technology may be constantly changing and that one can change programming, settings, intensities etc. I would be getting this for nerve damage in my spine that causes severe nerve pain through both legs and feet. I incurred the nerve damage in an emergency surgery in 2021. I am on the usual neuropathic pain meds but I resist taking doses that would even get me to a level where I can sleep more than 2-3 hrs at a time. I also have arachnoiditis/clumping of the CE nerve roots in the lumbar, but not adhesive and they do not think progressive in my case.

For those who might have a SCS for similar reasons, how long have you had it & how has it worked over time?

Btwn, the SCS are no longer done by neurosurgeons in my state (MA). They are ALL handled by PM. There is no option of convincing a neurosurgeon to do this here. I know 5 neurosurgeons and it's the way the state has distributed surgeries. I fully aware of the risks of the more invasive paddle leads as in laminectomies etc. Obviously, they aren't having any barely trained surgeons do this. I cannot go out of state. I am looking at MGH and BW for the process as my neurosurgeons and neurologists are from there.

Thanks so very much, in advance.

My husband had surgery to repair a lead four weeks ago and he’s been having dull headaches and now starting to get a little stiff neck ….there are orders for imaging to see if it’s a spinal leak. He had a headache when he woke up from surgery. Has this happened to anybody?

I had this done on L4, L5, S1 after all treatments in the past have failed. I had the two medial branch blocks and I thought they decreased the pain about 60-70%. But I’ve been dealing with my back for 20 years and don’t even really know what my baseline pain is anymore. I’ve just adjusted to being in pain. Anyway, I’m 3 weeks post RFA. My pain is worse. I know it’s still early. But curious what people have experienced with this procedure and if it didn’t work for you and your MRI and XRays don’t indicate that you’re a surgical candidate what were your next steps?
TIA!

I have Boston scientific and the programming and reps are horrible. I’m afraid they’re causing more damage as they don’t know the safe ranges for programming.

Has anyone changed their SCS? I’ve received several brochures for others and want to make the best decision. Thanks for any input and advice! Keep staying strong everyone! Hugs 🫂

I incurred damaged nerves at the L5/S1 levels in an emergency spinal surgery in 2020. I have done every single alternative/holistic and allopathic treatment possible, as well as having done pain reprocessing and neuroplastic and psychological work.

I have severe bilateral lumbar through legs and feet burning searing stabbing, crushing 24-7. I take 1000mg gabapentin and 20mg duloxetine and sometimes LDN. While all the things I have done and the meds help me to do basic tasks, I still live in an invisible boatload of pain & cannot sit or travel - sleep is evasive as no position relieves pain - being on back makes legs cramp and spasm - adjustable bed relieves nothing.

I am on disability, age 52 - I was a full time bodyworker, yoga and qigong teacher for 25 years. I really miss my practices and being able to do sitting meditation. I have been hesitant on SCS bc of being damaged in a surgery to begin with - which totally disabled my life. Thus I would be extremely hesitant on paddle leads as laminectomy damaged me already.

I am wondering if any of you have the less anchored leads and are able to do things such as a sun salutation and other yoga practices without your leads migrating ?

Thanks so much if you read this far!

I am a Saluda Evoke patient and experienced a series of distressing incidents involving a Saluda representative in the southern suburbs of Chicago on June 22, 2026.

I had coordinated with my usual Saluda rep, Camille, to schedule MRIs on June 22 and 23, 2026, at Silver Cross Hospital in the south suburbs of Chicago.

On June 22 at approximately 5:30 a.m., Camille texted me that she could not attend my appointment. I agreed to cancel and reschedule, but she then offered to send Mike as a last-minute substitute if I could reschedule my appointment. I complied with her request.

When I arrived at Silver Cross Hospital, I met Mike, who at first seemed personable. During our interaction, the MRI staff explicitly told Mike, in my presence, that their policy requires the Saluda representative to stay until the MRI is complete—especially important since this was their first experience with the Evoke system.

However, while I was waiting in the crowded Imaging waiting room, Mike accessed my device and turned it off without my permission or any warning. This action caused me significant distress and physical pain, and he only admitted to doing it after I questioned him directly. I consider this not only a violation of my healthcare rights but potentially close to battery, as it disregards my autonomy and my right to make decisions about my own body.

The Silver Cross Hospital Imaging Department explained that the Saluda remote lacks an MRI mode. Therefore, the Saluda representative must email screenshots to the Imaging Manager before the MRI to verify that the device is off and ready for imaging. These screenshots are documented in the PAX system. After the MRI, the same process is used to confirm the device is back on and functioning properly. This protocol was explained to Mike, the substitute Saluda rep, by the MRI supervisor on June 22, and the same steps were reiterated to Camille on June 23.

When the topic of who would be present for my MRI the following morning came up, Mike informed the MRI staff—contrary to hospital policy—that no Saluda representative would be available. He told me to keep my device off until after the second MRI, which I explicitly told him I did not want because it would result in pain levels of 8-9 for a full day.

The MRI supervisor reiterated my concerns to Mike, but he dismissed us and left the hospital before answering staff questions about the device or my procedure.

 There is never an appropriate circumstance in which a clinician—or anyone—should deny a patient their right to make their own healthcare decisions. If Mike were a nurse or physician, such actions could result in loss of licensure.

Please ensure you never provide Saluda access to your patients without you or a trusted provider being present. They are allowed to access your patients’ device without permission, cause pain and discomfort to your patients and intentionally disregard hospital policies.