A Waiting Game

The neurosurgeon gave us some insight, but also made the decision more difficult. He doesn’t think that removing the leads and keeping the battery is a good idea. Because the main risk with the surgery is infection, removing them now to have another surgery down the line to either replace them or remove the battery just increases the risk of infection.

Yesterday’s headache didn’t settle down too much and it continued into today. I’ve been turning the stimulator on and off throughout the day. My headache pain is worse with it on than with it off.

Eventually I will have to decide to have the leads replaced or the device taken in out, but it’s not an urgent decision unless I have mechanical pain (the pinching pain and tenderness) even when it is off.

Today’s plan is to keep in and leave it off for a while — maybe three or six months. If I decide my pain isn’t any worse than it has been with it on, I’ll have it taken out. If I feel worse now than I did with it on, I’ll have the leads replaced. It’s a matter of waiting, which I’m not very good at.

The great news is that since the current leads are migrating and will continue to do so, I don’t have to worry about how my movement affects the leads. I can bend and stretch and carry heavy things without a second thought. I’m looking forward to a celebratory yoga class when I get home.

Thanks again for listening to my saga. I’ll start blogging about something other than myself soon, I promise!



X-rays showed that leads haven’t slipped significantly. Since I can still feel the leads move when I move my right arm or shoulder, it’s pretty clear that they will slip more. My doctor answered all our questions candidly, but nothing he said makes the decision any easier.

The Medtronic rep reprogrammed the leads with the hope that activating different electrodes would still provide headache relief and stop the pinching pain associated with the leads. If that doesn’t work, there’s no point in keeping the device as it is. Then I have to decide to take the leads our or have them replaced.

The good news is that I can have the leads removed and keep the battery in. If I decide in the future that I want the leads replaced, it’s no problem. This is the option that I’m leading toward.

I meet with a surgeon tomorrow and then have a follow-up with the pain specialist next Monday. I doubt tomorrow’s appointment will give me much more information, but it will be good to have another perspective.

Otherwise, I’m doing great. My pain level is about a 6 right now (probably from having the stimulator messed with), but I’ve taken meds and it seems to be settling down. I’m sitting on the couch at the home of our very dearest friends, watching the Diamondbacks‘ first game of the season. The desert is in bloom and smells amazing. We’re getting Mexican food for dinner. What could be better?