Spinal cord stimulator and pain making me unable to go out — Scope | Disability forum
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Spinal cord stimulator and pain making me unable to go out

billy444
billy444 Community member Posts: 6 Listener
Hi I had a spinalcordstimulator fitted in June 22. At first it worked for about two weeks then the pain relief suddenly stopped I have bee programed twice with no effect . Now my pain is 50 % more that before the implant . I am unable to go out because of the pain . Has anyone had the same experience as me .
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Comments

  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,487 Disability Gamechanger
    Welcome to the community @billy444 :) 

    I haven't had a spinal cord stimulator fitted myself, so I can't speak from personal experience. However, I'm sure that some of our other members will be able to relate to your experiences. I hope that one of them will find and comment on your post soon. 

    Have you spoken to your doctor about your continued pain?
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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Hi @billy444 welcome to our great group, I am so sorry to hear your news on the implant, as Tori has mention have you been back to the hospital and what did they say about it, i will be following your thread as i am on the waiting list for the same procedure, and i would be interested in as much information as possible. I really hope you can get more help with this at the hospital.
  • Martin1957
    Martin1957 Community member Posts: 24 Connected
    Hi Billy444
    I'm currently awaiting the date for my implant having just gone through the assessment stage 

    Have you been able to address the matter is yours at the temporary stage or the full operation 
    Regards Martin 
  • billy444
    billy444 Community member Posts: 6 Listener
    I have had full implant . I have not been able to resolve  my problems I am still in pain and my implant is not working.

  • Hannah_Scope
    Hannah_Scope Posts: 7,093 Disability Gamechanger
    Hello @billy444

    I'm so sorry to hear that you are in so much pain :( 

    I just wanted to comment and check in. Have you managed to speak to your GP? (or specialist if you're still under the surgeon). Are they able to do anything to help? 

    Hoping you are well. 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    I'm so sorry to hear this @billy444 i really feel for you, i hope you are getting there mentally aswel as physical it sounds like such a let down.
  • billy444
    billy444 Community member Posts: 6 Listener
    Hi thank you for messaging me. I have just heard though a friend of a friend who had the same problems as I have it took 2yrs for them to get the frequency right and now they are pain free . I am only six months into my journey so there is hope yet . I am taking imipramine for my anxiety which is OK. Thank you again stephen
  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,487 Disability Gamechanger
    That sounds hopeful @billy444 :) It's good to connect with people who can understand a bit of what you're going through. Do you think you'll stay in touch with that mutual friend?
    National Campaigns Officer, she/her

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  • billy444
    billy444 Community member Posts: 6 Listener
    Yes I would like to stay in touch 
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Good morning @billy444 thanks for the update, I hope things improve for you. If you can will you keep us updated please, as it sounds like a few of us are at different stages for this process. 
  • billy444
    billy444 Community member Posts: 6 Listener
    Yes I will . Has anyone else having the same pathway as Iam if so I would like to hear from you Thanks stephen 
  • Hannah_Scope
    Hannah_Scope Posts: 7,093 Disability Gamechanger
    Hi @billy444

    I'm so glad you've found a mutual friend who knows what you are going through. I'm so glad you have more of an answer, and I'm keeping everything crossed you'll get the frequency sorted sooner 🤞
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • billy444
    billy444 Community member Posts: 6 Listener
    Thank you .Stephen 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    You are welcome @billy444. It is the very least you deserve.

    Please don't hesitate to let us know if we can do anything else to support you. We are all here for you and listening to you  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • FunWithChemo
    FunWithChemo Community member Posts: 28 Connected
    I am very sorry you have not had relief from the pain. My experience is very different from yours, however. I have had a spinal cord stimulator device implanted for over a year. I am completely off all opioids and have a 65 to 85% reduction in pain. Some days, I wish my pain was even less, but then I remember back to the days when I wondered if I would be able to walk at all due to chronic pain. My device has many different levels. Interestingly, a low setting works best for me. I had folks from the manufacturer follow me after the device was implanted to find the best setting to relieve my pain. Have they checked to make sure the wires are placed correctly? I encourage you to keep working on finding a good level. I wish you well...

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