Before the permanent stimulator is implanted, some patients, like me, have a trial to see if the device is likely to work. The trial is less expensive and less invasive than the permanent surgery. It has shown to be a more effective predictor of the implant’s success than nerve blocks, which are another option. Radiofrequency and Botox are also sometimes used as predictors.
In the trial, leads (wires) are placed in the back of the head at the same place the permanent leads would go. Instead of connecting to an implanted battery pack, the leads connect to an external battery pack, which is about the size of an 80s cell phone. The leads come out the back of your neck and drape down to the controller. It looks gross, but heals quickly after the trial is finished.
For a week to 10 days, the patient plays around with the controls to try to determine his or her optimal settings. At the end of the trial period, the leads are removed. Then the patient decides if the permanent implant is the way to go.
The trial is done in a limited time period because infection risk is greater the longer the incisions are open. The downside of this is that some people’s nerves get irritated during the surgery and may trigger bad headaches for part of the trial.
I was conflicted after my trial. I was pretty sure it helped, but I couldn’t quantify it. On principle, I don’t think something so subjective can be quantified (it’s the social scientist in me). Depending on the moment, I estimated between 30% and 70%. I have no idea if one is closer than the other, but I do know that I went home after the trial not knowing if I would get the permanent stimulator.
My doctor was a little surprised when I called to schedule my final surgery. It seemed to help enough to make all the costs, both financial and physical, worth it. I still can’t quantify how much the permanent implant helps, but I think it’s about 50%. Honestly, I’d do it again even if my relief was only 20%.