Month: March 2006

I can’t stop wondering if my nerve stimulator reduces my pain at all. In the first six months I had it, I had a three month period with no severe pain. Not one day, or even part of one day, was spent in bed because of a headache. I cling to that time as proof that the stimulator helps me, but the evidence hasn’t been strong since then.

Maybe I feel better because I’m not working a stressful job that I hate, nor am I depressed. I eat real food; even when I eat junk food it is made of simple, obvious ingredients (my favorite cookies contain flour, sugar, butter and real vanilla extract). I no longer have frou frou coffee drinks, which are full of artificial flavors and who knows what else, almost every day.

I’ve been fiddling with my stimulator the last two weeks. I’ll leave it on for a while then turn it off for the same length of time. It can be from a couple hours to a couple days. Or I’ll sleep with it on some nights and off other nights. No matter what I do, I don’t feel a difference. It’s tough to compare when my pain varies so much in a day, but I have felt no worse with it off than with it on.

It is not uncommon for a nerve stimulator to help someone at first, but then stop working. It’s as if the nerves outsmart the device so they can fall back into their normal (albeit dysfunctional) rhythm. Maybe this has happened to me. Or maybe I just want my body back.

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.

Today I intended to post pictures of my freshly painted kitchen, but it looks the same as it did on Wednesday morning. Instead of painting, I’ve spent the last five days lying on the couch because my nerve stimulator leads (or wires) started to move.

I felt the first twinge when I was teaching myself to crochet on the 15th. I had some other twinges over the next few days, but nothing strong enough to make me worry. By Wednesday I couldn’t ignore it any longer. Not only did I have intermittent sharp twinges of pinching pain in the back of my head and neck, every time I used my right hand, I could feel the leads shift. That’s not normal.

Last March I knew my leads had shifted because I felt the vibration in the wrong spot. They scooched over a bit and then stopped moving. This time is totally different. I can’t be sitting or standing up for more than 30 minutes before the pinching becomes unbearable. It doesn’t matter if I’m cleaning or walking or using my computer.

And there’s nothing to do except wait until the leads find their new spots and get settled. If the stimulator still works the same when the leads are finshed moving, there’s nothing to do. If it doesn’t or they keep moving, I’ll ultimately have to decide if I want to keep the implant or not.

Instead of thinking about it (or moving around), I’m getting a fix of movies and books. Between 7 p.m. on Saturday and 10 p.m. on Sunday, I watched Baby Boom, Maid in Manhattan, You’ve Got Mail, Old School and the first three episodes in the Pride and Prejudice miniseries. I also read the last 150 pages of one book and the first 50 of another.

I’ve reached my limit of being up, so that’s it for now. I’ll get into more details this week. Before I sign off, I need to ask a big favor — are there any chick flicks that you’d recommend? Generally Hart and I watch all our movies together, so I’m looking for movies that he won’t care if he misses out on.