Neuropathy and pain after failed pain stimulator surgery

Posted by jujubean1934 @jujubean1934, Jun 17, 2023

Hello well here is my story i went to get pain stimulator put in and we'll I walked in the room surgery room and did not walk out. They sent me home not able to stand or walk . Went into hospital .from my driveway I had sever pain worst I had ever had and nuropathy from waist down. Was there in hospital I did not sleep for 4 hole days and nights. I finally could for 2 hours at a time . I ended up after 7 days there only being able to stand for about 30 sec to taking about 4 to 5 steps then having to sit cause legs giving out . Then I went yo short term Rehab hospital. They found infections in my back . 3 differant strands top infections doctor was called in he said pain stimulator had to come out . So he called pain dr he did not wabt to take it out so they had words in hallway out side my room. He told him to clear his schedule it was at 8 am next morning . He said if it dont come out she will die . The infections are killing her. He said he had given me the strongest antibiotics out there to treat infections they was not working much . The nurses and doctors was very worried that i might die from it. They could not understand why this was happening any of it for it was new for them. I agree I really felt bad and could not eat or sleep well I would only get like 2 hours at a time for the pain was awful plus was sick from all meds they was pumping in me. I had it remoced next day like he set it for . I then 7 days later left there and went into long term Rehab . Was there where I learned to walk with walker and if long way to use wheelchair to go anywhere for I was told to not walk out side my home . So I went from walking to not walking with out the use of help. as in the use of a walker wheelchair for the rest of my life. I'm going on 7 yrs now since then still have nuropathy due to this. Down both legs from waist down really . Had to learn how to know when I had to use restroom to do both . Have had many accidents with that . But it did improve about 10 percent on that part . But that's it . I went from a viable walking life to a seditary home life . I was a CNA for 35 years . I miss not working but can't. I can't stand in one spot for longer than 3 min . And can't walk over 25 to 30 feet in home then have to sit down . Has anyone else had this happen . For what doctors and lawyers have said they never have seen this ?? . Could not get a lawyer to take case said they don't know if I will improve or not . Well I never did. So don't know why but I have to live with this . Pain meds and nurve meds was added to my daily routine . Please if anyone has seen this or has had this happen please let me know . Thanks for reading my story.❤️

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Hello @jujubean1934, Welcome to Connect. What an awful experience with a spinal cord stimulator surgery that was supposed to provide some pain relief. I can't begin to imagine how hard that has been for you. There is another discussion where members have shared their experience with spinal stimulators being removed that might be helpful:
--- Anyone had Spinal stimulator removed? Replaced?: https://connect.mayoclinic.org/discussion/spinal-stimulator/.

Can you share what bothers you the most of all your symptoms?

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Would you please share which stimulator was implanted in you? Boston Scientific? Nevro? Just would like to know which one and do you think it was a physician error or stimulator problem? We need to know!!! That is a terrible thing to happen!! So sorry!!!!

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@johnbishop

Hello @jujubean1934, Welcome to Connect. What an awful experience with a spinal cord stimulator surgery that was supposed to provide some pain relief. I can't begin to imagine how hard that has been for you. There is another discussion where members have shared their experience with spinal stimulators being removed that might be helpful:
--- Anyone had Spinal stimulator removed? Replaced?: https://connect.mayoclinic.org/discussion/spinal-stimulator/.

Can you share what bothers you the most of all your symptoms?

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What bothers me the most as far as the nuropathy goes is the burning feet and the tingling keeping me awake the most.also would say not knowing till it's there ready to come out to use bathroom not just one but both ways. Sorry if that is a little graffic just want to help someone else or just let them know if this has happened that there not alone. I feel like u am on how it happened have not herd or read anywhere in the last. 6 years of anyone having this happen to them . But as far as the other side of it is not being able to do what I use to do . I have excepted now but it was devastating at first. You look for the relief from pain that a stimulator is supposed to bring and when I done the trial it did I was so happy was even looking forward to posability of working again . So when I did not walk out and did not walk for days after or stand I was very devastated. But im pushing threw that it has taken my mobility and my health straight down . It not only gave me nuropathy it also weakened my spine erea at the base of my tail bone for standing up straight or even just standing is a issue I can walk better than I can stand in one spot . I have done many hours of physical therapy for it and the rest but that is the one thing that has not improved alot .

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Does anyone else use Fan on there burning feet ? I have one on constantly and can't put a blanket or anything over my feet .

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@bettyg81pain

Would you please share which stimulator was implanted in you? Boston Scientific? Nevro? Just would like to know which one and do you think it was a physician error or stimulator problem? We need to know!!! That is a terrible thing to happen!! So sorry!!!!

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St Jude I believe was the one its been like 6 to 7 years ago sorry but I am pretty sure it was from them . Thank you for reading my story ❤️ well it was mainly I think doctor but the battery pack I was alergic to it they also think it's a posability it leaked or something not sure but anyway I had 3 different infections around the battery pack erea it was awful it leaked constantly threw bandages so just it was a blessing to get it out and the antibiotics work after all that .

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I just had the Boston Scientific trial and never got any relief-none- from it-my dr said it ranked up there with Nevro; but, did not help me. He was saying a stimulator that was developed in Australia using AI is supposed to be really good.
Going for an epidural tomorrow-sure hope that helps!!

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I sympathize. I, too, have continuing pain and now neuropathy on front thighs and bottom of my feet. Wish I'd never had the implant from Abbott St. Jude in 2021. It changed life for the worse.

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If anyone is recommended for a spinal cord stimulator, run as fast as you can in the other direction. Here is an article about them: https://www.paintreatmentdirectory.com/posts/spinal-cord-stimulators-high-risk-low-benefit. Here's a much better alternative for neuropathic pain: https://www.paintreatmentdirectory.com/posts/calmare-therapy-for-neuropathic-pain-relief

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I had the Nevro HF 10 SCS implanted at the Mayo Clinic in Phoenix Arizona approximately two years ago. It does take time to find the program that works for you. It doesn’t relieve all pain but reduces it immensely. That plus small doses of gabapentin have helped immensely

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