Spinal Cord stimulation - Set for Wednesday Feb 16 — Scope | Disability forum
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Spinal Cord stimulation - Set for Wednesday Feb 16

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FunWithChemo
FunWithChemo Community member Posts: 28 Connected
Hi, all. I am scheduled for the installment of a spinal Cord stimulator on Wed Feb 14, 2022. I must admit I am pretty nervous. The one-week trial went well and I got about 60 - 65% pain reduction. The after-effects of the procedure were very painful so I am pretty worried as wed will be much more invasive. Has anyone out there had this procedure? What were the results? I have chronic pain from Peripheral Neuropathy. I went into my last series of chemo treatments with mild diabetic neuropathy and ended with very painful Peripheral Neuropathy. Every step hurts. I have had some relief with Butrans patches but as they are opioids I wanted to get off them. My pain doctor suggested the procedure. As I said, I am pretty nervous.
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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    Morning, I have no idea about the procedure but i didn't want you to think your posts were being ignored.
    I find the group wake up later in the day, so your comments have probably not been seen yet.
  • FunWithChemo
    FunWithChemo Community member Posts: 28 Connected
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    Thanks for your welcome and good wishes. I admit to being pretty nervous. As a diabetic, I do not heal well and am likely to get an infection. I look forward to the relief from pain, however.
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Good luck today @FunWithChemo and I hope the recovery is a smooth one :)
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  • FunWithChemo
    FunWithChemo Community member Posts: 28 Connected
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    Thanks! Yesterday afternoon, my doctor's office changed the procedure to Friday. we have to be there at 6:30 am! I do not remember the last time I saw 6:30 am... smile. I was all nervous then it was anticlimactic. My nervousness seems to have disappeared.  Again, thanks for the kind wishes!
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    Oh my god thats terrible, it must be awful to prepare for such things then to have it cancelled at the very last minute, fingers crossed Friday goes to plan, take care.
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hi @FunWithChemo just catching up, did everything go ahead on Friday in the end?
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  • FunWithChemo
    FunWithChemo Community member Posts: 28 Connected
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    Everything went well on Friday. They put me out (I told them I did not wish to participate..). My back is sore as one would expect. I don't expect to even see it until Friday when I will see my Doctor again. The device is switched off until Friday as well. I will pick up the remote and charger then, also. So - more anticlimactic feelings. I am well underway to, hopefully,
     get some relief. Thanks for checking in with me...Kind Regards
  • _witchcore
    _witchcore Community member Posts: 32 Connected
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    I have my trial this week. I'm terrified. The hospital is really far away and I have to go alone and get there in my chair (no car) by 9am... so I'm thinking about staying in a nearby hotel. I am having it in the hope that it helps with some severe bladder pain. It isn't licensed for this but my funding was approved and expired multiple times during lockdown. It's just been approved again, and they had a cancellation... but I've been waiting four years and forgot all about what it entails. For instance, I remember being shown a model of a spine and there were some rubbery tubes for the nerves and they showed me how the wires go across the nerves. I had a cerebrospinal fluid leak after a lumbar puncture ten years ago and I don't know whether or not this procedure involves going into the fluid-y bit. I can't remember what it's called 😄 Did you have any problems at all? And do you think I will be able to attend alone. It says someone needs to take me home but due to childcare I have nobody... and last time I relied on patient transport they turned up three hours after my appointment time. I will be sat in my wheelchair and not lifting anything but worried the swaying of the bus may hurt.
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    So glad to hear from you @FunWithChemo i wish you luck for Friday and a speedy recovery.

    Sorry to hear about your health and procedure problems @_witchcore i know nothing about this, but i don't want you to think we do not care. I wish someone could help you get to the hospital, it must be awful trying to do this on your own. Have you checked at your local hospital if there is any volunteer drivers that may be able to help. Or has that type of thing stopped as well with the "V" just a thought.
  • FunWithChemo
    FunWithChemo Community member Posts: 28 Connected
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    This is the third-day post-procedure. I am seeing quite a bit less pain than earlier. I have stopped taking pain meds. I must wait until the end of the week to get the remote and to get it turned on. I am really looking forward to less pain!
  • FunWithChemo
    FunWithChemo Community member Posts: 28 Connected
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    Witchcore, sorry about you not having someone to go with you. I suspect the surgery center or hospital will have a problem with you not having a safe ride home. They may actually cancel your procedure if you cannot arrange a ride home. You will be sedated and will need to depend on someone to help get you home. I was facing surgery for my 1st of 4 cancers. I went to class the afternoon before surgery. I used a ride service for disabled folks. I had problems with them being late but on this night they were almost 4 hours late. I was standing on a sidewalk south of Market in San Francisco. - for 4 hours! I remember crying and being upset (and probably feeling a bit sorry for myself). Eventually, they arrived and took me to my home in the East Bay. The procedure went well. For the past 30 years, I have relied on my wonderful wife to accompany me to medical procedures. She has been with me every step of the way through all of my cancers. You should contact a cancer facility (we have The Women's Cancer Resource Center in Berkeley). You may be able to find a volunteer to take you home after the procedure. You can also call Uber or Lift for a ride home. Make sure you take along the number to call for your ride as the surgery center will probably make the call for you. You can also call your doctor's office to explain the issue with not having a ride to see what they suggest. Good luck to you. Be well.
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    This is the third-day post-procedure. I am seeing quite a bit less pain than earlier. I have stopped taking pain meds. I must wait until the end of the week to get the remote and to get it turned on. I am really looking forward to less pain!
    wow this is sounding very possative, i bet you can't wait to see how much less pain you have.
    So happy for you and i look forward to hearing how things go when your switched on. x
  • FunWithChemo
    FunWithChemo Community member Posts: 28 Connected
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    Hi. I went through a one-week trial during which I wore the device on a belt around my waist. I had 60 to 65% pain reduction...  The implanted one should do even better than that as I get used to using it and playing with the settings. I find the whole idea of this method of pain control just fascinating...
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    Hi @FunWithChemo how are you doing.
    just wondered how you getting on with your implant darling - haven't seen you around for a bit - unless your fed up with some of us ha ha x
  • FunWithChemo
    FunWithChemo Community member Posts: 28 Connected
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    "haven't seen you around for a bit - unless you're fed up with some of us ha ha x". Thanks for checking in. I am not fed up with yaw'll. Far from it... This group has been great! I am doing very well. I healed nicely from the surgery. Almost all of the surgical pain is gone and more importantly, most of my Peripheral Neuropathy pain is gone! I have between 80 - 100% pain reduction. I am amazed! I also have chronic swelling of both feet and ankles sometimes going up as high as my calves and even up to my knees. For some reason, I have no idea why... I have had more swelling than usual. My reaction to the swelling is a sort of rubbing feeling but no real pain since the device was installed. All in all, it is a great success...
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    So pleased to hear from you.
    Wow this sounds very promising with the procedure, i'm really glad about that.
    Shouldn't need to ask ha ha but i take it you have checked on the extra swelling.

    Really am glad to hear all from you, keep on being the positive person you are. x
    ps i totally agree with you about the group. 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Thanks for letting us know how you're doing @FunWithChemo it's good to know you're recovering well :)
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  • FunWithChemo
    FunWithChemo Community member Posts: 28 Connected
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    I am about a month out from my Spinal Cord Stimulation and I thought I would let you know how I am doing... For the most part, my pain is reduced by 80%+. I am thrilled. I thought I would own the pain for life. I had some pain yesterday so I turned the device up a bit and that seems to have helped. I can see it will be a bit of adjusting over time to keep the pain at bay. All surgical pain is gone and everything is nicely healed. I have this squarish object under the skin on my right upper hip but it is no big deal. The device company, Nevro, has folks who call me each week to check in and suggest minor adjustments to the device. Basically, I am thrilled!
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    Thats fantastic news @FunWithChemo i am so please,
    Missed seeing you around.
  • Sandy_123
    Sandy_123 Scope Member Posts: 49,826 Disability Gamechanger
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    That's really good @FunWithChemo that you are getting less pain now

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