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.