4 Month SCS Update

Well, I’ve had a Spinal Cord Stimulator (that actually works well) for four and a half months now. More like eight if you consider I got it in December, before my revision. I love my Boston Scientific Spectra SCS. Even more, I love the folks who have made getting my SCS possible – those who selflessly have cared for me during my months of restrictions and post-op. Without them, I wouldn’t have a Spinal Cord Stimulator. Without them, my pain would be entirely unmanaged.

Because my friends helped me get my SCS and helped me through the healing process, I was able to travel (with significant help) for three days to a women’s retreat. I’d not traveled for anything other than specialist appointments for several years and it was SO NICE to get out of my apartment and fellowship with others. I didn’t have a CRPS flare afterwards, but I did have a Dysautonomia flare which laid me low for a few days on bedrest. I recovered, however, and I’m back to my “new normal” self. God and my friends made all that possible. I owe my friends a great debt.

I could be wrong, but I feel like the SCS has helped prevent some major RSD/CRPS flare-ups in the last few months. I’ve had flares (the worst was around 46 days), but compared to how bad it could be, I’ve been spared. My pain levels aren’t zero, but I am able to get through the day with naps and intermittent rest between activities. I can walk MUCH better with my SCS and I can stand for longer (15 min) too with less pain. Probably the biggest change has been that I’m rarely afraid of people or things touching me when my SCS is on. When it’s off, that’s a different story altogether, but it’s on almost all day long. Before my SCS implant, I was terrified and crippled by the fear of someone or something touching me. I didn’t want to be out of my house or around ANYONE! Now I love and miss socializing most days.

I’m trying to find comfortable settings for my stimulator so I can keep it on at night and hopefully not wake up as frequently nor in so much pain in the morning because the CRPS has caught up with me while it was off. I think I’m learning and making more progress with this each night.

Some days the stimulation helps more and other days less even though I don’t feel any more or less likely to flare from one day to the next. Sometimes the stimulation moves a little even though my leads haven’t shifted a bit. I don’t know why. Last week I was getting stabbed in my hips and lower abdominal area. This week I still have some hip and coccyx coverage but it’s not stabbing and I’m able to turn the stimulation up without irritation. No idea why that happens, and I wasn’t reprogrammed last week either (though I think I was the week before).

SCS isn’t for everyone, and for some it’s a nightmare. I’m glad that despite a revision things are now working well and I can be more comfortable.

Gutsy Girl


3 thoughts on “4 Month SCS Update

  1. I’m recovering from my first replacement of my SCS. First one I had was medtronic, I now have the Boston scientific spectra. I will say I love the feeling of Boston compared to my medtronic I had. Surprising the difference, sadly though this is still not able to relieve enough pain to allow me to get back to a sense of normalcy. I admit I miss socializing, and I hate feeling like a burden to my loved ones. My hope is to one day have a positive story like yours. I wish you the best in your recovery. Hopefully since it’s been a few months since this update things have gotten even better for you.

  2. Hi gustsy girl, reading your post i’m very new 2 the scs, having burning pain at incision sight on the spine, programs I have are not working well, last program was right before Christmas tired of pain, medicine and doctors could you plz advice if you have had these symptoms, much appreciated, TIRED

    • Hi Tired,
      Incision site can take a while to calm down, especially if you sit on it a lot. It took me many reprogramming sessions to get my SCS to work very well. If you have a program you like, make sure they save it (in other words, they don’t make changes to it!) and then try basing a new program off of a copy of the one you like best. Sometimes I just ask them to create a program from scratch, however. If you just got your SCS within the last year, you may find that things are still settling in, scar tissue is still forming and changing your stimulation. It should get more predictable with time. But don’t be afraid to ask for reprogramming and spend a good bit of time with them and just know that you have to be focused. Call it a day. 🙂 It took a long time after my surgery for my energy to return. Even now I have days where I feel utterly useless. I think that’s the nature of chronic pain. I had a revision surgery because the first time didn’t go well, but they spent a lot of time reprogramming me before deciding to do so. Lidoderm patches might help at the incision site if you are far enough out from surgery that doctor approves. I’ve had my SCS for several years now and I’m so glad I got it! At the same time, I still have to use my wheelchair and my SCS does not take away all of the pain (I wish!!). Still, life is much better with it than without it. Oh, another tip. Play around with your remote. Really learn how to use it, how to change amplitude, pulse width, hz, etc. This can make a so-so program become much better. You can revert savings if you don’t save changes. Use a notepad to take notes about what you do and don’t like about each program so that when you go to another reprogramming session, you have a game plan. This was really beneficial for me! Best of luck to you. I hope your energy returns. I know the feeling. I really do. You’re not alone.

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