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Disillusioned with SCS

Hi All,

I'm 3.5 months post permanent SCS implant (Boston) and am really disillusioned with it.

I knew going into this that it wasn't going be a cure, but I had hoped for more than what I feel I'm getting.

My trial was great, pain dropped from 7-8 down to 0-2. Perfect!

Had the permanent implanted and then moved back in with my parents as I was unable to care for my daughter whilst recovering.

I'm back home now and it seems like the slightest exertion  (grocery shopping, chasing my daughter, 3hrs at work) is enough to render the stim useless and my pain flares right back up again. 

I've been reprogrammed but it's still not enough to het the pain controlled. I've been riding the current flare up for 9 days now. Increased meds, reprogrammed and increased the stim and just can't get on top of it.

Has anyone else found that their stim doesn't provide relief when they try to do normal activities?

Please don't try and tell me not to overdo things. I'm taking things so slowly it's driving me crazy. If I did anyless I may as well not even get out of bed.

July 2009 - L1, L3, L5 disc hernation
Jan 2011 - L5/S1 Microdiscectomy
Dec 2012 - return of neural symptoms
June 2014 - fusion recommended - awaiting insurance approval
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Comments

  • jimandjrjimandjr Dallas TXPosts: 745

    It's very common to having probs doing normal activities. I am in the same boat. My scs helps when I am laying or sitting the best. I can stand and walk in short bursts. That is always hit or miss. I have an Algovita. I try to crank up the hf program when I stand or walk. That seems to help me the most. It can be depressing. I think that's why they make sure we are not depressed before the install. 

  • That's exactly it Jim... if I spend my day doing nothing but lying down, the stim is great, but if I do things it just can't keep up.

    Work don't understand why I'm not 'fixed' and workcover (workers disability insurance in Australia) think that I should be back at fulltime work.

    July 2009 - L1, L3, L5 disc hernation
    Jan 2011 - L5/S1 Microdiscectomy
    Dec 2012 - return of neural symptoms
    June 2014 - fusion recommended - awaiting insurance approval
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  • jimandjrjimandjr Dallas TXPosts: 745

    I've had 3 surgeries and countless procedures and now an scs. My full time job is pain mgmt. I can relate to you. Nothing else was working after years and years post surgeries. My ortho suggested an scs. While not a cure, it has helped me a lot. Can I go back to work? No. I did not even bother applying for disability. Just live off savings. 

    I could not understand why they screened me for depression until after I got the scs and it did not cure me. Even though everyone told me it's not a cure, in the back of my mind I was hoping for more. It is tough not to be depressed at my new life sometimes. I just take it day by day. 

  • Thanks for sharing Jim. I'm finding it hard to find people who understand what I'm talking about, let alone understand the reality of things.

    I used to just work through the pain tgen come home of a night and collapse, take my meds and try to sleep then try to be awake enough in the morning to go to work and do it all over again.

    Now, I've got a 19month old. I can no longer afford to be medicated to the point that I pass out, nor can I just lay down to rest.

    3hrs at work left me in a pain flare that's been going on for 9 days. I think it's time to reconsider the benefit of 3hrs at work vs the pain of a 9 day flare.

    I just want to do things without spending 2 weeks recovering from it

    July 2009 - L1, L3, L5 disc hernation
    Jan 2011 - L5/S1 Microdiscectomy
    Dec 2012 - return of neural symptoms
    June 2014 - fusion recommended - awaiting insurance approval
  • jimandjrjimandjr Dallas TXPosts: 745

    Fascinating. You are my twin. Before my cervical adr, in 2012, and the acdf the next year, I would work to make as much money as I could and rest at night to hopefully get in the next day to do the same. Like you, meds played a huge part. Weekends were spent resting. I could not go out and play like my coworkers. Weekends were spent getting my spine pain ready for the following week. I had a lumbar microd in 2001 and my ortho has been treating the pain from that ever since. Are you under the care of a pm? Have you done any rfas?

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  • jimandjrjimandjr Dallas TXPosts: 745

    Having a baby to go with your pain mgmt must be very challenging. I can't imagine. I am single. 

  • It's strange finding someone who knows what I'm saying and doesn't give me strange looks trying to process it.

    I have been under a pm for about 4 or 5 years now. Was sent to him after my micro d failed in 2012. Been fighting nerve pain off and on (mainly on) since my injury in 2009.

    I've had a number of RFA's as well as a pulsed radiofrequency last year... The RFA's have worked for 18months to about 3 months. Hence why we tried the pulsed RF. When that failed it was time for the SCS.

    I think I'm finally just about on top of this flare... has taken 11 days and countless additional meds. Just in time to try 3hrs at work again on Tuesday. Will be seeing my gp this week and probably also my pm doc to get a better plan of attack. If I can get them both to agree, maybe the insurance company will stop trying to tell me that I'm fixed and should be working more.

    I'm so lucky I met my husband before I got injured and that he hung around after my injury. I don't socialise enough if I had to try and find someone now.

    We're very lucky we got pregnant quickly. My neuro gave us the all clear 6 months after the fusion and said to try then cos there was no telling how long I would be ok for. I was pregnant 2 months later and in pain again a month after that.... pregnancy as you can imagine was a nightmare.  But that's a whole other story. 

    July 2009 - L1, L3, L5 disc hernation
    Jan 2011 - L5/S1 Microdiscectomy
    Dec 2012 - return of neural symptoms
    June 2014 - fusion recommended - awaiting insurance approval
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