I have some reflecting to do about our week of stimulator trial hell. Sorry for the repost, but the other one got lost on my end.
What a miserable week for Nick, dealing with the two wires piercing through his skin, the giant box taped to his back, the screwy programming of the actual unit, and the realization that it isn’t the saving grace we have been imagining for the last year.
We spent an entire year building up to this. We got a first opinion. We got a second opinion. We got a THIRD opinion. We’ve had many appointments just discussing the stimulator, have talked to other patients, manufacturer reps, and done lots of reading on the internet.
The results are disappointing, yet somewhat intriguing. It produced a pleasant sensation, just not where he needed it. Our experience with this damn thing kept us guessing all week, and ended with Nick yanking it out himself because the surgical site was getting infected.
The jury is still out about whether he will get it permanently installed or not. It helped a little to distract his brain from the phantom and nerve pain, but it didn’t actually help with the pain because he couldn’t feel it where he needs it: in his butt, hamstrings, and especially his feet (you know, the feet that aren’t there, but still haunt him daily). A week later, he still can’t decide if that mildly pleasant sensation and half-assed pain diversion is worth going through with having the surgery and getting the device permanently implanted. The surgery involves general anesthesia and a partial lamenectomy to remove bits of his spine to make room for it. Ugh, another fucking surgery.
In the meantime, his phantom pains are OUT OF CONTROL again, particularly at night. He’s sleeping like shit unless he takes pain medicine, and some nights that doesn’t even help. A sleepless Nick = a grumpy, irritated Nick. Thankfully the last few nights he has taken enough medicine to sleep soundly through the night, and put his cheapy vibrating TENS unit on his stumps prior to falling asleep to help distract him.
To me, him taking an extra pain med at night is worth it to assure he is rested and energized the next day. For him, he’s trying to take as little pain medication as possible with the hopes of getting off it all together some day. And that was the point of the spinal cord stimulator, but it’s clear the stimulator can’t replace good ol’ oxycontin for an injury as severe as Nick’s. A bummer for so many reasons.