Coping, Treatment

The Big But

The stimulator isn’t causing me much pain anymore, but…

The leads feel like they’ve moved significantly. I accidentally hit the bottom of my right breast and I could feel the left lead wiggle. When I bend my head forward more than about 20 degrees, I can feel it wiggle.

Because I can feel a vibration when the stimulator is on, I’ve also been able to turn it up and move around to see where it is. It’s up high on my head and way down into my neck. Not good, not good.

So we’re headed to Phoenix Sunday night. I’ll have x-rays and see my doctor and Medtronic rep on Monday morning. I may be catastrophizing, but I’m pretty sure any solution will involve surgery. If the leads stay where they are, I think they’ll just continue to slip when I move.

The next question is whether I will have the leads replaced or have the stimulator removed altogether.

It’s a gamble to have them replaced. The surgery is expensive and some people’s bodies stop responding to the stimulator after leads are replaced. If it doesn’t work, I’ll have to have another surgery to have the device removed. I don’t know what percentage of people have had this problem, but I expect that there will be at least a little more data than there was three years ago.

Having it removed will be like getting a child to give up a security blanket or thumb-sucking. I’m not convinced the stimulator is still helping me, but keeping it lets me think it is. The placebo effect a response that can be seen in the brain, not just wishful thinking. For me feel psychology has an effect too, just like a blankie. Wishful thinking at least calms my nerves.

Having it removed would also mean that I’d no longer have a big box in my chest. More important, I could move freely again. Yoga, kayaking, gardening, yoga, bowling, horseback riding, yoga. I could ride roller coasters and use an electric blanket. I could go through airport security without being patted down, sand and paint cabinets, and crochet.

In my desperation before I got the implant these factors didn’t factor at all. Now they are huge. Not knowing what I would lose — and the pain of the loss — before they were gone is part of this change. A bigger component is that my perspective has changed.

I no longer feel like I’ve run out of options. I don’t expect to be headache-free. I am calmer, less concerned about having a traditional career, not resentful of my housewifely duties. I’ve learned to take care of myself. I now understand that headache is only one of component of my plenteous, messy, joyous life.

1 thought on “The Big But”

  1. Your site is one of the most personal and well-written Migraine/headache pages I’ve come across. Thanks for sharing your story–I look forward to reading your entries in more detail later…

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