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Removal of permanent spinal cord stimulator

1Jan1Jan Posts: 19
edited 02/10/2019 - 2:32 AM in Spinal Cord Stimulation

hello everyone. Unfortunately my neurosurgeon and pain consultant have said they have to remove the complete SCS system. I am devastated but I know is has to be done because I have been unwell since it was implanted. They don’t know yet whether I am allergic to one of the components or if it’s my body rejecting it. They have never known anyone react like me t this hospital and I get the impression they have not had to remove a complete system before. It has been in for 7 months, and am very worried that tha percutaneous leads will have scarred in too much and they will cause more damage removing them. I wish I had told them how bad my symptoms were becoming months ago but I so so so wanted it to work and just kept hoping the unwanted pretty severe allergic reaction type symptoms would improve.  I was getting help from the system itself, not as good as the triial but anything is a help. So I can’t believe this has to happen. I am upset beyond words. And I am frightened and tired so tired of living in such severe intractable debilitating disabling pain. Housebound and often bed bound, living off strong medication that hardly takes the top edge off the pain. I wonder how much more my body can cope with. Thank goodness for my wonderful hubby,family and friends.

Has anyone had to have theirs removed completely? How do they do it and how are you now?  I hope someone can share their experiences on this. 

Thnk you to all who read this. 



  • memerainboltmemerainbolt IndianaPosts: 6,443

    I am so sorry!! My heart goes out to you for all you've been through and the amount of pain you are in. If you don't mind me asking, is this just nerve pain or nerve pain and spinal pain? Do you know your surgery date yet?
    I had a SCS implanted several years ago to control the nerve pain coming from S1. I was also on a lot of medication for pain due to ruptured disc and several other issues. Within 2 months I had to have it removed, I had too much permanent nerve damage and it was causing more pain. To me, the surgery to remove it was not any different than the implant. I had leads, no paddles, and I insisted that those come out too. It took about 6 weeks to heal and I did not have any problems.

    In Aug. 2016, my PM doctor recommended a pain pump with morphine. (please read mt medical history, it's easier than putting it all here). I am not a candidate for surgery and the meds were not helping. Like you, I came to this forum looking for answers and found a lot more than that. In Jan. 2017 I had the pump implanted and have no regrets. But I still have the nerve pain, I take Neurontin which helps some and I do my stretches and ice packs. I know this is something that I have to live with.
    Like you, I am housebound except to go to my PM doctor and psychologist. I am so glad you have a strong support system plus you've gained more support here. If you need to, you can send me a private message (PM) if you need someone to talk to.

    Feel free to ask me anything you need to, I don't mind. Take care and we hope to hear from you soon. 

    Veritas-Health Forum Moderator
    Please read my  Medical Story  
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