Wow, I’ve had my Spinal Cord Stimulator (SCS) for nearly 4 years now! I’m so grateful for it and for all the people who helped me through multiple surgeries.
I hope this post will reach some people who are interested in getting a Spinal Cord Stimulator to help control their pain or who already have one but still have questions.
Why Did You Get Your SCS?
I got my SCS because I have Complex Regional Pain Syndrome (CRPS) and I tried every other available treatment, including nerve blocks, which weren’t sufficient to control my pain.
Did It Work For You?
Well, the first surgery was a flop. The leads weren’t put in quite the right place, and about three months later I had a revision surgery in 2014. In between the two surgeries I was a hurting puppy and I was getting painfully zapped by the SCS. Many hours of reprogramming later, the rep for Boston Scientific and my surgeon decided that a revision was the best option. I’m glad that I had the revision, but it was a really difficult decision due to the risks of surgery plus CRPS. However, I healed up much faster after the second surgery and was pleased with the relief I obtained from allodynia, which was much closer to the result I’d received during my SCS one-week trial. The SCS doesn’t help me much with burning pain, but I’ll tell more about that in a minute.
Does The SCS Take Away All Of Your Pain?
Nope. It never has, and it never will. I am still extremely limited in my activities, including walking and standing. I still have stabbing, shooting and aching pains. The pain that my SCS has helped eliminate the most is my extreme hypersensitivity to touch, especially light touch (allodynia).
I’ve Heard About High Frequency Programs. Have You Tried This Yet?
I asked my rep to create a high frequency program, and she did. With this program I actually can’t feel the stimulation, but I do finally get some relief from the burning pain. Unfortunately, I can’t run the lower and higher frequency programs at the same time with my current SCS model (the Spectra), but the rep told me that in the next 1 to 2 years, Boston Scientific will have a model available with a higher capacity and the ability to run low and high frequency programs simultaneously.
Do You Have Any Problems With Your SCS?
Not really. The only problems I have come inherent to being the “owner” of a Spinal Cord Stimulator in the first place. For example, sometimes it’s just hard to keep up with my SCS’s battery charging demands, especially when running a high frequency program which eats up a lot of juice. So I’ve ordered more sticky patches regularly from Boston Scientific rather than trying to wear the charging belt (which I find very uncomfortable), and I try to plan my charging time for when I will be standing because my charging disk overheats and shuts down when I charge while sitting or with too much clothing on over it. Another problem is that sometimes my SCS implant site gets sore. Again, I figure that’s kind of to be expected – I’ve got a “rock” in my back that I wasn’t born with! Getting zapped when laying down is something I’m used to, but it’s a little annoying. Other makes and models of SCS have a feature that automatically adjusts to the user’s change in position to avoid zapping. The final issue I’ve occasionally run into is the MRI issue. My SCS isn’t MRI compatible (though Medtronic makes a version that is). These are all small potatoes to me – I’m grateful for the pain relief!
Does It Matter Who Reprograms Your SCS?
Recently I had a reprogramming session with a rep from Boston Scientific who also has the Spectra SCS implant. It was a totally different experience being programmed by a rep who is also an SCS user. The whole process took less than half the time it normally does, and we were able to create several new programs and nix a few old ones that weren’t helping anymore. I recommend working with a new rep if your rep can’t help you. Don’t be afraid to ask. They want to help, and each rep has his/her own style.
Have questions about getting a SCS? Let me know!