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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@sweetmommap22

Yes, I believe that getting overloaded has a lot to do with flare ups. I tried Tumerac but could not tell a difference. How is the Vicodin? I was on Oxys and now have been on Hydrocodone. Super willing to try different things. If you dont mind me asking, how was your relationship with your Ex ( obviously he is your ex) but i had a narcissistic husband (17 years) just wondering if that fight or flight lifestyle has played a part of diagnosis of CRPS...

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The ex husband was the worst mistake I ever made. So much better with that narcissistic man out of mine too. I think living with an extreme amount of stress in your life is a big reason we have CRPS.
I have been on the hydrocodone on and off for the 23 years I've had this. I recently started up with cannabis. It really helps me sleep and takes that sting out of the pain. You know how you always feel wound up? The cannabis makes that go away. I bought some more expensive brand of turmeric and used it everyday for 2 weeks and the joint pain was so much better.
Actually being able to work at the job I love is the best medicine of all. Remember we can't get overloaded by happiness and laughter.

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@kate2002

The ex husband was the worst mistake I ever made. So much better with that narcissistic man out of mine too. I think living with an extreme amount of stress in your life is a big reason we have CRPS.
I have been on the hydrocodone on and off for the 23 years I've had this. I recently started up with cannabis. It really helps me sleep and takes that sting out of the pain. You know how you always feel wound up? The cannabis makes that go away. I bought some more expensive brand of turmeric and used it everyday for 2 weeks and the joint pain was so much better.
Actually being able to work at the job I love is the best medicine of all. Remember we can't get overloaded by happiness and laughter.

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I cant function on cannabis, otherwise I would love to be able to use it during the day. I use it at night and on the weekends. I will look into more expensive turmeric and see if that helps! I am very thankful for my job as well. Makes getting out of bed easier!

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I have the Boston Scientific spinal cord stimulator. First, you have to have a trial one for 7 days and nine worked awesome. Just had the permanent one 6 weeks ago and still to early but getting up and down and sleeping has improved 100%. The walking and standing so good yet but have been told it could take months, I'm hopeful! At least I am not screaming out with pain. Research. Before surgery I used a Tens unit.

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@gmcjensen

I have the Boston Scientific spinal cord stimulator. First, you have to have a trial one for 7 days and nine worked awesome. Just had the permanent one 6 weeks ago and still to early but getting up and down and sleeping has improved 100%. The walking and standing so good yet but have been told it could take months, I'm hopeful! At least I am not screaming out with pain. Research. Before surgery I used a Tens unit.

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Keep us posted.I was gonna get one from same place.My pain management Dr. talked to me about 2 years ago and then i was ready to do it this year and he just changed the subject.

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@larry68

Keep us posted.I was gonna get one from same place.My pain management Dr. talked to me about 2 years ago and then i was ready to do it this year and he just changed the subject.

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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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@larry68

Keep us posted.I was gonna get one from same place.My pain management Dr. talked to me about 2 years ago and then i was ready to do it this year and he just changed the subject.

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Have you tried a TENS unit? My doctor wasn't that supportive about the SCS but I was tenacious. I have certainly had some improvements but it can take longer than 8 weeks and what I've read the majority have 50% improvement. I am still in the process of meeting with rep from Boston Scientific to tweak my programs (remote). Typo in last text; standing/walking is still painful but I have not increased the stimulation passed 24%. Will keep you posted. Ask a lot of questions. I think to early in my recovery to know the end results. Boston Scientific has GREAT customer service (for me). Always return my calls if many calls holding. My rep always calls or text me. I am in Maine and I think very important to research. My neurosurgeon has been doing the implants for over 22 years. Have you been to their website (www.pain.com)?

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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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@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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I feel your pain. I cannot explain why the pain pump, at a fairly high dosage, does nothing to help mitigate my pain. Sorry that the SCS did not help. I had a similar experience with the NEVRO unit. The rep insisted that it would give excellent pain relief, even after my Medtronic unit had stopped working. Even the trial was not successful. But, I was so desperate that I was willing to try just about anything. Needless to say, the unit did nothing. I am somewhat upset with the way the NEVRO rep used me. Will not be fooled again (hopefully). Those of us in severe pain are often the targets of such people.

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I have a Boston Scientific SCS. The first put in in 2012 worked well. To up date it one was implanted in 2018. Same doctor did both. Great results first time. Not so great second time as it functions according to position I am in. My CRPS feet are not covered sufficiently so I am looking at a third. The other two may be removed according to CT results. Had a 2 day trial back in Jan of 23 and got out of bed with no foot pain!

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@JustinMcClanahan

Hi, @heisenberg34, you may find this article from John Hopkins Medicine of interest:

- Spinal Cord Stimulator Removal: Q&A With a Neurosurgeon
https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/spinal-cord-stimulator-removal-qa

I'd also like to invite back @mamabear62 who posted in 2020 wondering about having a spinal cord stimulator removed in the neuropathy group:

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

@heisenberg34 - this all sounds like a really frustrating situation, have you discussed the possibility of changing out the battery so that you can get your MRI? After reading the article from John Hopkins, it sounds like you are not alone in your experience with not obtaining relief from a spinal cord stimulator. Have you discussed your desire to have your SCS removed altogether?

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I just had the SCS removed about a week and a half ago. Surgery went smoothly. Only took about an hour to complete. Recovery is going without a hitch. Have to wait a few more weeks to get the MRI. Of course, I know that hinging a lot on this is dangerous. If it reveals nothing out of the ordinary, then I'm not sure what else to do. My implanted pain pump has done nothing to mitigate my pain. I am purposing to get out and do more walking/bike riding, even if it ramps up my pain for a while.

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