1. < Chronic Pain

Spinal Cord Stimulator Removal

Posted by heisenberg34 @heisenberg34, Aug 5, 2023

My Medtronics SCS stopped working after about three years. A NEVRO rep talked me into having one of theirs implanted. They had to use an adapter to connect Nevro unit to Medtronics lead. As a result, I cannot have an MRI. Also, the Nevro did not help at all. I would like to have all the SCS stuff removed (or, at least, the NEVRO battery replaced with a Medtronics) so I can have the MRI that my pain specialists seem to want very badly. Anyone out there have this experience this?

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marquis113 | @marquis113 | May 29 10:35am
In reply to @heisenberg34 "Make sure you get the trial. Allow a good three to four days to see if..." + (show)
@heisenberg34

Make sure you get the trial. Allow a good three to four days to see if decent pain relief ensues. Watch out just in case the electrode moves (which happened to me). If this happens after a few days, any pain relief will suddenly disappear. Hopefully, they will take an x-ray to confirm movement of the electrode away from the "sweet spot". You should base your decision on whether to go ahead with the permanent implant on the best relief you received.

BTW... it is possible that you may not get as much pain relief with the permanent implant (as was the case with me) as you got with the trial. No one seems to know why. But, I still received about 50-60% relief. Along with my meds, it made life almost normal again... until it just stopped working about three years later.

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Agree. I have a stimulator from Boston scientific. It does help some with the pain. I had to have multiple resetting to get some relief. Not 100% but does help so I can tolerate the pain.

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gmcjensen | @gmcjensen | May 30 8:54am
In reply to @texasaviatrix "Bless anyone who gets relief from a spinal cord stimulator. I had absolutely no luck with..." + (show)
@texasaviatrix

Bless anyone who gets relief from a spinal cord stimulator. I had absolutely no luck with it. My Nevro unit was installed about 6 years ago for severe lower back pain caused by an injury. They did a trial first for about 4 days and honestly, I couldn’t tell you now how much or even if I got much relief. I was under a lot of pressure to have the surgery and had tried just about everything else. But the SCS gave me zero relief. Every time the technicians would come up with some new “tweak”, they were confident I would get results. But it was a huge disappointment for me. I decided to try it after 8 years with a morphine pump. It was time to replace it and, although I did get some relief from the pump, the meds seriously messed with my head and I had to give up flying ( private pilot). Maybe it depends on the location of your injury? I have met a couple of people with neck pain who had good results with SCS. But a dear friend who also suffers from lower back pain recently had the same Nevro SCS implanted with the same disappointing outcome. (Different doctors as well.). It’s been over 20 years since my injury and I still haven’t found good relief. I do take morphine and hydrocodone at night, just to get comfortable enough to sleep. But I only take it at night because, if I take it twice a day as prescribed, it stops working as well. I’ve also tried cannabis and CBD, which actually does help, but my pain doc threatened to stop my pain meds RX if I continued. 🙄 (It shows up on the urine tests) Unfortunately, that alone does nothing, so I can’t afford to lose my meds. I do have a separate implant in my hip that completely blocks that pain, thankfully. What I would give for the same results for my back! I hope my experience will help anyone considering a spinal cord stimulator.

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It saddens me for you. My pain has improved a little but I am only 7 weeks from having Boston Scientific SCS. My trial was awesome, 80% relief!!! I cannot imagine what you go through. I can at least stand up, sit down and stay seated pain free but am so eager to have somewhat of active life. I don't even have a refill for my pain medication which I don't understand. I'm 77 years old and have had many prescriptions (knee replacement, hip replacement and broken ankle). I have a wonderful hubby who is a great caregiver but that is growing old for him. I understand as I was a caregiver for years but it was with pay!!! I am hopeful that in time things will improve. Suffering is difficult (PAIN!) but I shall TRY to sit here (pain free when sitting) and be grateful that I can get relief sitting. I pray you fine a solution

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1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | May 30 3:26pm

I had a trial (80% relief!), and an implant of an Abbott SCS (75% relief for a year) in 2017. Over the next 3 years it became gradually less effective, but still helpful with quarterly adjustments. Since then, I can't really say that it has any effect, but I leave it on just in case it's helping my CIDP pain. I had an upgrade to make it MRI compatible - just a change of settings on the controller.

Even though it doesn't seem to be helpful anymore, I don't regret having it implanted. Having a few years of pain relief was wonderful! I'd forgotten how it felt.

Response from the Abbott rep has been quite slow and he doesn't always follow through with things he says. I'm considering having the SCS removed, as it's more trouble than it's worth. CIDP is the pits!

I recently did a 4 week trial of Hizentra, and at week 2, the burning pain was all but gone! It's a sub cutaneous infusion that can be done at home. I've been having IVig infusions for a couple of years, with minimal improvement, so I asked my neurologist to find other options. Unfortunately Humana denied Hizentra and is telling me to try Gamunex, but the process is dragging on, with a return to the 6-8+ pain level. If one or the other works, I plan to get rid of the SCS. I'm glad to hear that it's a straightforward surgery. But it will have to wait in line until I have Achilles tendon transfer on both ankles (spontaneous bilateral ruptures of both Achilles tendons due to Levofloxacin), a right knee replacement and a sub talar joint fusion. Things do have a way of piling up!

I agree with others that we have to be proactive with medical treatments, that we have to avoid being gullible, that we have to ask lots of questions, and that we not take one doctor's opinion as gospel. The medical road we travel is never a straight one. Rather, there are stop signs, bump ahead, hairpin turns, dead ends, u-turns, steep hills, construction, bridges washed out, blind intersections, drivers under the influence.......

Stay alert! Be safe! Question authority! Stand up for yourself! Be kind, courteous and appreciative of your good medical professionals.

Random thoughts I've learned along the way.

May we all find ways to live through our pain.

Jim

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user | @user | Jun 9 5:02pm

Has anyone else be dumb enough to hav a stimwave implanted for back pain?
I have 2 neither of which worked. Out of business as far as google knows. Need it to go away for a MRI. Any clues out there in the Phoenix area?

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 10 9:27am
In reply to @user "Has anyone else be dumb enough to hav a stimwave implanted for back pain? I have..." + (show)
@user

Has anyone else be dumb enough to hav a stimwave implanted for back pain?
I have 2 neither of which worked. Out of business as far as google knows. Need it to go away for a MRI. Any clues out there in the Phoenix area?

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Hi @user, I moved your question about removing a spinal cord stimulator to this existing discussion:
- Spinal Cord Stimulator Removal https://connect.mayoclinic.org/discussion/spinal-cord-stimulator-removal/

I did this so you can read previous posts and connect with other members who have had theirs removed. You may also be interested in the comments in this related discussion:

- Anyone had Spinal stimulator removed? Replaced?: https://connect.mayoclinic.org/discussion/spinal-stimulator/

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jthomas458 | @jthomas458 | Jun 10 11:14am
In reply to @gmcjensen "It saddens me for you. My pain has improved a little but I am only 7..." + (show)
@gmcjensen

It saddens me for you. My pain has improved a little but I am only 7 weeks from having Boston Scientific SCS. My trial was awesome, 80% relief!!! I cannot imagine what you go through. I can at least stand up, sit down and stay seated pain free but am so eager to have somewhat of active life. I don't even have a refill for my pain medication which I don't understand. I'm 77 years old and have had many prescriptions (knee replacement, hip replacement and broken ankle). I have a wonderful hubby who is a great caregiver but that is growing old for him. I understand as I was a caregiver for years but it was with pay!!! I am hopeful that in time things will improve. Suffering is difficult (PAIN!) but I shall TRY to sit here (pain free when sitting) and be grateful that I can get relief sitting. I pray you fine a solution

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It’s terrible they took away your pain medication. If you say that you still need the pain medication, they should give it to you.

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gmcjensen | @gmcjensen | Jun 10 4:37pm

I feel as if a leed or something is wrong with the connection to the battery but how can I find out? I communicate this to all??? If I don't get some resolve soon I will ask my g.p. to refer me to a local neurosurgeon. I feel at 77 years old I should be able to take pain medication if I choose. The medical field has my permission to look at my medical records and see that I have had pain medication in the past (and many times)

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gmcjensen | @gmcjensen | Jun 10 4:41pm
In reply to @user "Has anyone else be dumb enough to hav a stimwave implanted for back pain? I have..." + (show)
@user

Has anyone else be dumb enough to hav a stimwave implanted for back pain?
I have 2 neither of which worked. Out of business as far as google knows. Need it to go away for a MRI. Any clues out there in the Phoenix area?

Jump to this post

Contact the company (perhaps Boston /scientific). I've read you can have removed. Neurosurgeon in your area should know

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nuri | @nuri | Jun 11 10:17am

My 44 y/o son has had excruciating back pain which was treated with hydrocodone, lyrica and other pain meds which helped, however, they wanted to implant a scs, but he had to get a psch evaluation first.......have you ever heard of this? they will not do the implant until he meets with a psychiatrist.......for what? i don't know......can anyone answer this question?

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3 replies
heisenberg34 | @heisenberg34 | Jun 11 11:03am
In reply to @nuri "My 44 y/o son has had excruciating back pain which was treated with hydrocodone, lyrica and..." + (show)
@nuri

My 44 y/o son has had excruciating back pain which was treated with hydrocodone, lyrica and other pain meds which helped, however, they wanted to implant a scs, but he had to get a psch evaluation first.......have you ever heard of this? they will not do the implant until he meets with a psychiatrist.......for what? i don't know......can anyone answer this question?

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Yes, I had to get the psych evaluation to get my scs implant. No big deal. Just ordinary stuff. They just want to make sure you won't go off the deep end and try something crazy with the device. Have him go ahead with it if you want the scs implant.

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