One Week & Counting

The surgery to remove my nerve stimulator is a week from today! (Yes, the original date was September 13, but it was rescheduled for the 12th.) The only part that I’m nervous about is that it’s at 2:30 in the afternoon. I can’t eat after 7 p.m. the night before, so I’m going to be a bear — with a headache — by about 11 a.m.

It’s so worth it though. We’re flying out on Saturday and have planned for our Phoenix family and friends who we consider family to come to my parents’ house on Sunday. We’ll definitely have some fun in the days before the surgery.

And we had dinner last night with our friend who’s a yoga instructor. I’m so excited to start taking classes with her again.

I’m one happy girl who’s bubbling over with anticipation.

Reader Stories, Treatment

A Nerve Stimulatoree’s Positive Experience

My feelings about nerve stimulation has obviously changed over time and I have often wished that I wrote about the process as I went along. Mary Gustafson, a journalist in her mid-20s, has done exactly that on her blog That Headache Girl.

Mary, who is insightful and hilarious, describes the personal and technical aspects of the surgery and the device. During all this, she’s been interviewed by some TV stations that were writing about the procedure.

Be sure to check it out for another — and positive — view from a nerve stimulatoree or just for a great blog on life with headache. Here are some nerve stimulator-specific posts to get you started.

[9/21/06: Mary’s blog is not currently available.]


I Did It!

Wednesday, September 13 is the day that I’ll have my nerve stimulator removed! Don’t worry about number 13 superstitions — September 13th is my mom’s birthday and has always been considered good luck in my family.

I’m not sure when we’ll go to Phoenix, but I have pre-op appointments on the 12th. I’ll have Hart there with a camera, so you may even get to see the huge smile on my face before I go into surgery.


Nerve Simulator Beauty Tips

An old friend recently reminded me that I’ve never really cared about what other people think about me or if something on me doesn’t look “right.” Chronic headaches diminished that part of my personality for a long time because I spent so much time judging myself that I assumed that everyone else was judging me too.

Anyway, I think my “who cares?” attitude is on its way back. I know this because I have a lump in my chest that’s a little smaller than a cigarette box, which has a 3″ scar on top of it.

After the surgery, the scar bothered me the most. I knew I’d have a lump and I adjusted to that beforehand, but I didn’t think about the scar. Very silly, I know, but it just didn’t occur to me. My doc did a nice job sewing it up, but, as my mother-in-law said, he’s no plastic surgeon. If this matters to you and you are willing to pay for it, you can probably get a plastic surgeon to do your stitches. Keep in mind that it will need to be opened up again to have the battery replaced, so this will be a recurring expense.

Although it irritates me sometimes that people look at the box, I generally don’t care. If I like a shirt that doesn’t cover it, I wear the shirt anyway. But I don’t wear scoopneck T-shirts anymore. Otherwise, I only try to hide it if I’m going somewhere that I want to be sure that I don’t draw attention to myself (like at a wedding) or if I don’t want to talk about it (like at my high school reunion).

If there’s an outfit that shows the lump and I absolutely must wear it, I throw a scarf over my shoulders or wear some sort of wrap. I just found a dress with a V-neck front and back that’s cut to cover the scar perfectly. I’m sure that was the designer’s intention.

You can see the wires in my neck a little bit, but only if you know where to look. Most people won’t even notice it and, if they do, they’ll think it’s a vein. Besides, if you have no qualms showing off the box, no one will pay any attention to the wires. 🙂

A small part of the back of your head will be shaved for the surgery. For almost everyone, it will be covered by hair. A week before my trial implant, I shaved my head. It’s something I’ve always wanted to do and for once I wasn’t working, so I did it. Two months was all it took for the part my docs re-shaved to blend into a short haircut. Unless your hair is super short, the spot won’t be noticeable. If it is, any good stylist can cover or blend it.


Cost of Nerve Stimulator

I should have addressed this before I waxed poetic about my stimulator. . . . The device and surgery are expensive and upkeep, like changing the battery, means more money spent over time. I know patients who have spent between $40,000 and $60,000 for the trial and implant combined. Some people pay out-of-pocket, some people are able to use insurance, and others join clinical trials, so they don’t have to pay anything.

A lot of people on forums have said that their insurance companies are pretty cooperative. If a company won’t cover the procedure specifically, many will still pay surgery and doctors’ fees. I’ve been told that a hospital prefers to have insurance cover the device so they know that they won’t get stuck with the bill when the battery is changed or if you have problems with the device that require surgery.

Tax breaks can cover quite a bit. If you spend more than 7.5% of your income in a given year on medical expenses, you qualify for a deduction on your federal return. You may also qualify for a state deduction.

One way I justified the cost is that if it helped me so much that I was able to work, my additional salary would cover the initial outlay. This hasn’t been the case yet, but I did get some pleasant surprises in tax breaks and insurance payments. Even if your insurance company is incredibly generous, it’s a lot of money for a “solution” with many unknowns.