Anyone tried Spinal Cord Stimulation for Chronic Pain?

Posted by steeldove @steeldove, Oct 25, 2018

Spinal Cord Stimulation – A Compelling Treatment Alternative for Chronic Pain https://www.hss.edu/conditions_spinal-cord-stimulation-treatment-alternative-chronic-pain.asp
Vladimir N. Kramskiy, MD Assistant Attending Neurologist, Hospital for Special Surgery, Clinical Assistant Professor of Anesthesiology, Weill Cornell Medical College
What Is Spinal Cord Stimulation?
Read more here: https://www.hss.edu/conditions_spinal-cord-stimulation-treatment-alternative-chronic-pain.asp
Posted: 10/8/2018

Anyone tried Spinal Cord Stimulation for Chronic Pain?

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

@mamabear62

I had the Stimwave spinal stimulator implanted July 2019 after fusion in 2014 failed . Had a successful trial then permanent place and has been a nightmare ever since. One lead migrated and had to have it replaced. Having to travel 100 miles for program changes due to it over stimulating other areas of my back and causing even more pain than my original pain . Your dealing with Sales Reps not clinicians. There first priority is to sell not help the patient . I wouldn’t recommend the Stimwave device . Research everything and everyone . It’s been pure hell

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Thanks for the reply. I have had both pros and cons. Either they have had good results or bad. I can’t find any good current statistics on success rates. I to don’t like the idea of working with sales rep. Do the cover additional costs if leads migrate or if the system fails in other ways? It would be great to be pain free, but I certainly do not want to add to my pain. I am still on the fence. Maybe people could let us know what system they used. Maybe some are better than others or maybe it could be the experience of the doctor doing the procedure that determines the outcome? Any information for people trying to make an informed decision would be greatly appreciated.

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@ceceilia

Thanks for the reply. I have had both pros and cons. Either they have had good results or bad. I can’t find any good current statistics on success rates. I to don’t like the idea of working with sales rep. Do the cover additional costs if leads migrate or if the system fails in other ways? It would be great to be pain free, but I certainly do not want to add to my pain. I am still on the fence. Maybe people could let us know what system they used. Maybe some are better than others or maybe it could be the experience of the doctor doing the procedure that determines the outcome? Any information for people trying to make an informed decision would be greatly appreciated.

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@mamabear62 and @ceceilia

I had a Burst DR spinal cord stimulator implant in June of 2017, to treat my chronic neuropathy pain. During the first year I had significant pain relief, up to 80%. After a year, pain would start returning, so the company rep made adjustments to the stimulator, and I've needed adjustment every 3 months the past two years. I think that I've just about maxed out its benefit. At least it's only a 45 mile drive for me.

I wish that I had done more research about the surgeon who did the implant. I never met him until he poked his head in the cubicle in pre-op. And I've never seen him since.

A few months ago I met with a different doctor to talk about a dorsal root ganglion stimulator implant. She was a great doctor. She wanted to work with the rep, trying a different course with how he adjusted my scs, and wanted to try all of the non-surgical options before I got the drg implant. I learned more from that one appointment than I have from all kinds of doctors over the past decade.

The Burst DR stimulator is a product of Abbott.

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@cbrackle

Hi,
Yes, I have a regular Stimulator (5 years ago) and a DRG (Dorsal Root Ganglion) Stimulator (3 years ago) .
I know many people that say that they get life changing results with the stimulators.
Unfortunately I was not one of them.

My trials were amazing, but when the leads healed into place they did not provide much help for me.

I just had a Medtronic Pain pump put in ~2 weeks ago and it is working very well so far (they are still titrating up the dosage).

2 pieces of advice.
1) Find out ALL your possible alternatives so you can make an informed decision (many Dr.s only work with one brand and so do not offer the others as options).
2) Be sure you get all the background on the Dr. putting it in as they may not actually be the best. (my first Stim unit was revised 3 times. then I moved to another state and I found out there was a way that they could have placed it correctly but since it takes 45 more min on the table they did not, so they did it again)

When I was advised to do the Stim units that is all I was told there were - and I may still have tried them.
However, since over the years the only med that helped was dilaudid, it would have been nice to know that there was an alternative out there that could be as or more effective.

Again, this is my story. Lots of others out there.

I am not trying to discourage you, but for the stim units it really depends on what position the leads finally heal into place and your personal nerve quirks.

I wish you the best.
Carl

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@cbrackle

I haven't heard from you for a while. How is your pain pump doing? I mentioned it to my pain specialist and he said that they aren't done much anymore, and he wouldn't recommend it. He didn't think they're very effective. I have an appointment with the neurospecialist on the 26th to discuss my options going forward. My SCS has stopped giving me any pain relief, so I need to figure out where to go next. We're going to talk about a DRG, but I don't know if that will be any more helpful than the SCS. I'm so tired of the pain in my feet and ankles and up to mid-calf.

I remember another man has a pump and loves it, but I haven't heard anything about it for a while.

Jim

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@goetf4997

Tank you for the information regarding the Spinal Card Stimulation. My only question has to do with the numbness pain, tingling and pins and needles pain sensation in both legs, feet fro the waist on down. Does this stimulation help with those pains?
Thanks in advance for your reply.
Fred

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I had lower back pain and tingling in feet. My doc said it would be a home run for the feet and might help the back. It was the reverse. HR for the back and did nothing for the feet. They (Nevro) have tried a few programs for my feet but they were all unsuccessful. Recently I've seen a Nevro FB ad that says they can help neuropathy of the lower extremities. I'll be looking into it. It only takes a few minutes for the rep to strip out 1 of the 3 programs I have in my SCS.

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@ken82

I had the same L4,L5,S1 fusion 25 years ago..the 2 plates and 6 screws are still in there. They took bone from my hip to pack around the fusion. I have had no .... absolutely no problems since..the fusion was kept very stable.. great surgeon team in Oklahoma City.. k

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Ken82, I'm glad to see a positive post for your kind of surgery. I've been told I need multi-level laminectomy for L3, L4, L5, S1 with fusion. It's rare I see someone with as many levels but yours is close. I've been terrified about this ordeal. I already had C4-C5 decompression and fusion about a year ago but continue to have bad neuropathy in my hands and arms. I don't need more pain from the lumbar surgery on top of that. My neurosurgeon has recommended an SCS for my hand and arm pain for which I am about to schedule the trial phase now. I'm still not in much pain from the lumbar problems and am fine sitting down. But I may be forced to have it as I can feel my legs getting weaker and can't stand very long. So I'm glad to see someone having a positive experience.

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@jimhd

I remember my trial. It was wonderful to feel nearly pain free! I had forgotten how that felt. But then I had to wait for a couple of months to be scheduled for the implant. With my stimulator, I had to wait for 6 weeks, giving the surgery site time to heal. The scar tissue would have been in the way of the nerves sending their signals. But after those 6 weeks, I felt 80% pain relief. It's hard to describe to someone who hasn't experienced chronic, intractable pain. Enjoy!

Jim

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I am considering a spinal cord stimulator. I was wondering if your pain is still controlled 2 years later.

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@dave130 My surgery was done by an orthopedic specialist in Oklahoma City.. a Spine surgeon..he is probably retired now.. it took 8 hours.. at Oklahoma Baptist Hospital.. I had also seen a Neurosurgeon but opted for the spine specialist.. it took a team.. Where will you have this done.. examine the entire team that will be cutting and pulling all those bones and tissue.. Where they get the bone to pack around the fusion should also be understood..
My hand and arm pain came later after the surgery ... a couple years.. but it was caused by Cubital Tunnel Syndrome.. that's the crazy bone in the elbow... that an arm surgeon had to move that nerve so it would not be stretched when bending my arm... My spine surgeon diagnosed it but he did not do arm surgery... He had given me epidurals to see if the pain was caused by cervical vertebrae .. the epidurals did not get rid of the pain... so it had to be something else.. ..and the Arm surgeon fixed it .. the Spine surgeon also prescribed a Cervical Traction device that I use ... down on the floor for 20 or 30 minutes where the device clamps around my neck and stretches me out for awhile.. relief.. Good Luck..

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@ken82

@dave130 My surgery was done by an orthopedic specialist in Oklahoma City.. a Spine surgeon..he is probably retired now.. it took 8 hours.. at Oklahoma Baptist Hospital.. I had also seen a Neurosurgeon but opted for the spine specialist.. it took a team.. Where will you have this done.. examine the entire team that will be cutting and pulling all those bones and tissue.. Where they get the bone to pack around the fusion should also be understood..
My hand and arm pain came later after the surgery ... a couple years.. but it was caused by Cubital Tunnel Syndrome.. that's the crazy bone in the elbow... that an arm surgeon had to move that nerve so it would not be stretched when bending my arm... My spine surgeon diagnosed it but he did not do arm surgery... He had given me epidurals to see if the pain was caused by cervical vertebrae .. the epidurals did not get rid of the pain... so it had to be something else.. ..and the Arm surgeon fixed it .. the Spine surgeon also prescribed a Cervical Traction device that I use ... down on the floor for 20 or 30 minutes where the device clamps around my neck and stretches me out for awhile.. relief.. Good Luck..

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Thanks for replying. If I have the lumbar surgery done it will be by the same neurosurgeon that did my C4-C5 surgery. He’s very well respected and did a great job on my first surgery from which I recovered well. I’m fortunate to live where there is a regional medical center. The lumbar surgery would be in the hospital where I would recover and go straight to the hospital’s rehabilitation program. He said that he would have me up and walking right away. But, as I mentioned the C4-C5 didn’t relieve the neuropathy in my hands and arms and is very bad, so, getting the SCS is going to be my first priority at this point. Ken, thanks for sharing your experience and advice, and well wishes, and the same to you in the future.

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@mgh15

I am considering a spinal cord stimulator. I was wondering if your pain is still controlled 2 years later.

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@mgh15 My SCS implant was in June, 2017, and the first year was really great! The second year, it was still helping, but it needed adjustments to the settings every 3 months. After that, it gradually became less effective, and by the 3rd year, if I turned it off for a month, I couldn't feel any difference.

I will have to say that a new rep took over the business of making adjustments, and I felt around 25% reduction in the pain. At the same time, I had a dorsal root ganglion stimulator trial, and there were complications requiring removal of the wires, but it was in long enough to tell that it wasn't going to help my pain.

I have the stimulator on, in the hope that it's helping, along with the various medications I take. In September, I began monthly IVig infusions, with two days of 4 hour IV infusions each month. I didn't feel any improvement until the 4th month, and since them, the pain reduction has been significant. Certain things exacerbate the pain - sitting for more than 30 minutes, standing still and being on my feet all day, whether working at home or shopping. By the end of those long days, my feet sometimes burn.

Things that currently help. I think I've tried every neuropathy pain med that was on my pcp's list, then the pain specialists' list, a couple of neurologists' lists, and various folk remedies. All 5 of my siblings found that Gabapentin did the job for them. Not me. So, I took morphine sulphate contin for quite a few years, but my doctor cut my dose in half, to a most sub-therapeutic dose. Someone here suggested buprenorphine, so when I started seeing a new pain specialist, she agreed that it could be a safer and more effective medication. I initially went to her because I'm considering a pain pump implant, and we've talked about zonitide, but I would have to find a compounding pharmacy to make it for me, and find someone to maintain the monthly filling of the pump. That's in the initial research stage right now. I've been in the hospital twice since September, so that's set me back on a number of fronts. Sorry. I've rambled off topic.

I have the SCS still going, monthly IVig infusions, Duloxetine @120mg daily, buprenorphine @ 2mg 3x daily, meloxicam and tylenol (mostly for arthritis), Prednisone 10mg (in hopes of slowing the progression), and I put Lidocaine 5% cream on the areas that are burning. Unfortunately, my idiopathic small fiber axonal inflammatory demylenating polyneuropathy is progressing at a rate that concerns my neurologist. I have a couple of new tests being scheduled, with a couple others after that. I don't know if I'll ever get to the pain pump. It's all been just a bit too overwhelming, along with being treated for depression, anxiety and PTSD with a therapist and Wellbutrin, Mirtazepine and Clonazepam and my service dog, Sadie.

So, where are you in the SCS implant possibility? Have you scheduled a trial? Please do your research as to your choice of surgeon. That's more important than I realized. I never met the surgeon until I was in the surgery prep area. I dealt with assistants both before and after. If I were writing this in 2018, I'd be hyped to recommend getting the implant. It did give me a couple of years of pain relief, and I think it could be helping me more right now if I could get the company rep to return my calls. The settings he gave me last summer did make a difference. I guess I just need to press him more to meet with me.

I hope I've given you a little food for thought. I know that implants have helped many people.

Jim

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@jimhd

@mgh15 My SCS implant was in June, 2017, and the first year was really great! The second year, it was still helping, but it needed adjustments to the settings every 3 months. After that, it gradually became less effective, and by the 3rd year, if I turned it off for a month, I couldn't feel any difference.

I will have to say that a new rep took over the business of making adjustments, and I felt around 25% reduction in the pain. At the same time, I had a dorsal root ganglion stimulator trial, and there were complications requiring removal of the wires, but it was in long enough to tell that it wasn't going to help my pain.

I have the stimulator on, in the hope that it's helping, along with the various medications I take. In September, I began monthly IVig infusions, with two days of 4 hour IV infusions each month. I didn't feel any improvement until the 4th month, and since them, the pain reduction has been significant. Certain things exacerbate the pain - sitting for more than 30 minutes, standing still and being on my feet all day, whether working at home or shopping. By the end of those long days, my feet sometimes burn.

Things that currently help. I think I've tried every neuropathy pain med that was on my pcp's list, then the pain specialists' list, a couple of neurologists' lists, and various folk remedies. All 5 of my siblings found that Gabapentin did the job for them. Not me. So, I took morphine sulphate contin for quite a few years, but my doctor cut my dose in half, to a most sub-therapeutic dose. Someone here suggested buprenorphine, so when I started seeing a new pain specialist, she agreed that it could be a safer and more effective medication. I initially went to her because I'm considering a pain pump implant, and we've talked about zonitide, but I would have to find a compounding pharmacy to make it for me, and find someone to maintain the monthly filling of the pump. That's in the initial research stage right now. I've been in the hospital twice since September, so that's set me back on a number of fronts. Sorry. I've rambled off topic.

I have the SCS still going, monthly IVig infusions, Duloxetine @120mg daily, buprenorphine @ 2mg 3x daily, meloxicam and tylenol (mostly for arthritis), Prednisone 10mg (in hopes of slowing the progression), and I put Lidocaine 5% cream on the areas that are burning. Unfortunately, my idiopathic small fiber axonal inflammatory demylenating polyneuropathy is progressing at a rate that concerns my neurologist. I have a couple of new tests being scheduled, with a couple others after that. I don't know if I'll ever get to the pain pump. It's all been just a bit too overwhelming, along with being treated for depression, anxiety and PTSD with a therapist and Wellbutrin, Mirtazepine and Clonazepam and my service dog, Sadie.

So, where are you in the SCS implant possibility? Have you scheduled a trial? Please do your research as to your choice of surgeon. That's more important than I realized. I never met the surgeon until I was in the surgery prep area. I dealt with assistants both before and after. If I were writing this in 2018, I'd be hyped to recommend getting the implant. It did give me a couple of years of pain relief, and I think it could be helping me more right now if I could get the company rep to return my calls. The settings he gave me last summer did make a difference. I guess I just need to press him more to meet with me.

I hope I've given you a little food for thought. I know that implants have helped many people.

Jim

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Thank you for all the information. Specific details are helpful to me as a retired RN.
I am currently on my second round of steroid injections. The first three helped but the pain slowly increased over the year. I have had 2 more spinal injection since January and see my pain specialist next week to evaluate pain relief. Ibuprofen and and an as needed hydrocodone help me with activity related pain.
Sounds like I may have a long haul in getting pain relief or I may be blessed with a shorter time to the right treatment for me. I am encouraged with the quantity of treatments available.
Thank you again for reaching out and sharing your journey with back pain.

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