Let the electricity jokes begin

You can call me a lazy blogger if you’d like but that’s not going to prevent me from writing this post in the form of a "listicle." I may be a lazy blogger, but I’m also a tired one. Too tired to think about paragraph breaks and clever segues and transitions or any kind of cohesion altogether. It even gets a generic title: Things Mary Learned About Nerve Stimulator Surgery Today and Other Assorted Bits.

• If you can’t leave a doctor’s office with a few hundred dollars worth of drug samples, a Palm Pilot knockoff is a pretty good substitute, and it’ll last longer than most samples. I’m just sad that its sole purpose is to keep a meticulous daily record of symptoms and meds taken – there goes my plan to finally download and read all those classics I’ve always meant to read. It is, however, an effective alarm clock as it goes off every hour between 6 and 11 p.m. Remind me to never take it into a theater.

• It’s too bad that not all surgeons are as valiant or modest (or sexy) as the actors who play them on TV. I’ve been told that cockiness is a quality you want in a surgeon, which is true considering they’re cutting within millimeters of major nerves and organs and have the power to bring you in and out of any state of consciousness within seconds, but not so true at a cocktail party where you don’t need to be convinced how world class they are.

• For this surgery, they run wires out of my head and tunneled though my neck, and then down, where they’re connected to a battery pack/pulse generator or IPG. Previously, I knew it was going to be implanted in the abdominal area or possibly in my chest, but I learned yesterday that it’s actually implanted somewhere in between, and then back a little ways. Now I have to figure out which side I sleep on so they can put it on the opposite side. The IPG itself is about half the size of a traditional pacemaker. About the best description I can give it is that it’s maybe a tiny bit bigger than a tub of Burt’s Bees lip balm and it’s supposed to last at least five years.

• To me, the most difficult part of this surgery may be that it won’t totally control the pain since it will be stimulating the occipital nerve that causes pain in the back of my head, but not as much in the front, where the majority of my pain is. This could be fixed somewhere in the future when insurance companies start coming around, but until then I have a feeling that the phrase “I need more stimulation” will become the story of my life.

• Aside from my worries about post-op pain and complications, I have one worry that’s incredibly vain, and that is that they’ll need to shave a little more of the back of my head than I was anticipating. It also made me really glad that I’ve been growing it out for the last year and a half. They said it grows back pretty quickly.

And the future is: electric youth

Due to a doctor’s office scheduling snafu that was, shockingly, not my fault, I made two trips to Chicago this week, neither of which resulted in a frenzy of shopping, but that’s OK. My disappointment subsided when my doctor walked into the exam room and asked if I was ready to become a guinea pig. My answer, not surprisingly, was hell yes. The clinic has finally been given the green light to start their clinical trial for the nerve stimulator and I was the first lucky patient to find out and get started. Next week I have to go back there to meet with both teams of doctors and begin keeping an electronic diary for 30 days. They won’t be able to implant the temporary leads until I can prove that I have six or more migraines a month (if only it were only six). So if all goes well I could have surgery in as soon as a month and a half.

Now that I kind of have an idea for when this will all happen I’ve started to let myself make some plans and think about all the trips I’ve been putting off until after the surgery. Well, put off no more. Here are my plans for Mary’s Freeloading Reunion Tour. To all of you who’ve said “come visit me,” you will live to regret offering me your spare futon. If I’ve left you off my itinerary, let me know. Or if you’ve saved up some vacation time and want to come along, you’re more than welcome to. I only ask that you have a high tolerance for frequent pit stops.

• I’ll start in the Great White North, Minnesota with stops in the Twin Cities, Owatonna, Rochester and Austin.
• From there it’s on to Iowa because I could really use a guided tour of the gorgeous new Des Moines library. I never thought I’d go back to Des Moines for the architecture -- it’s a city whose skyline’s most notable feature is a building that looks like an Absolut bottle at night.
• After Iowa I could head due east for Chicago, but all you Chicagoland residents will be sick to death of me by then, unless you are my sister, and then you are contractually mandated to put me up.
• Next on the list is St. Louis where more blood relatives are obligated to entertain me and take me on brewery tours and to Cardinals games.
• Then it’s off to tap the Rockies in Boulder and Denver and take in at least one boxing class and one side-trip to a mountain gambling town.
• When I get tired of tapping the Rockies (as if that’s even possible), it’s time to trek south to Tucson to see three new cousins who’ve been born since my last trip there.
• Last but not least, The Freeloading Reunion Tour will draw to a close in L.A. where I’ll mooch off of the last of my relatives with spare bedroom.

Did I leave anyone off? Also, would it kill any of you to relocate to Seattle? I hear summer is fantastic there.

Continued…Electric boogaloo part II

More pros and cons of occipital nerve stimulation:

• Switching postural positions (Laying to sitting? Sitting to standing?) and sudden movement may cause an “uncomfortable increase in stimulation.”
• Neck, shoulder, scalp, and back massages are a BIG no-no. Damn. Same goes for acupuncture, chiropractic, ultrasound and hand-held electric back massagers.
• It’s not a given where the battery pack, or “IPG” is placed. It can be implanted in the chest, lower back or abdominal/hip region. All of which have their plus and minuses, but I don’t really care as long as I don’t have to buy low-rise jeans forever.
• Here’s hoping I never need to be defibrillated.
• The literature reports that nerve stimulators may interact with (or be turned on and off) cell phones, Blackberries, PDAs, power lines, metal detectors, theft detectors, electric blankets, MRIs, etc., but doesn’t say anything about lightening. Hmmm.
• This study, like all good studies has to include randomization, control groups (but not quite placebo) and double-blind methods. For a better explanation about randomization and why it’s apparently necessary, ask my sister the statistician.

The best part about this (and my positive attitude is subject to change if for some reason it’s decided that I can’t be in the study) is that there is an endless supply of bad puns and double entendres that can be made, which I promise I will stop making. However, electrical engineers, anesthesiologists, and you, dear readers, are invited to keep up the wisecracking. I’ll even help you. I’ve found several oft repeated words and phrases lend themselves to such jokes, and they are: jolt, zap, buzz, spark, stimulate (as well as over stimulate, under stimulate, increase of, decrease in stimulation), charge, rechargeable, turned-on, turned-off, malfunction, dysfunction, burn, excite, implant…and the list goes on.

Electric boogaloo

It’s entirely possible that this post is premature. There’s not guarantee I’ll get into the nerve stimulator trial, but this is me being optimistic for once. So, as promised, another disorganized list of pros and cons for occipital nerve stimulation:

• The study comes with a free Palm Pilot (or similar PDA) for electronic diary keeping!
• Another good excuse to avoid Wal-Mart, whose theft detectors are notorious for giving implanted people a jolt at its entrance and exits if the patient forgets to turn off their device.
• I have to promise to make every effort to not get pregnant for the duration of the trial (approx. three years).
• Rest assured, I can’t electrocute anyone but myself, so standing next to me or touching me is completely safe (especially if your shoes have rubber soles). My apologies in advance if I trip your car alarm, however.
• Would it be a good thing or a bad thing to live next to a wind farm?
• If your Hyundai’s battery dies, call me, not AAA – my battery is good for five years.
• It’s possible that at some point in the future I could be in the position to break up with some, unwitting fool. In my imagination, the scenario goes something like this: Poor fool: But, Mary, I thought I saw, like, sparks between us. Me: I don’t think so. That was probably just my surgically implanted neuromodulation device interfering with your cell phone. (See what I mean about bad puns? There’s a million more where that came from, folks).

I’m sure I’ll feel compelled to update this list soon -- maybe I’ll throw in the anatomy lesson then.

Looking ahead

My headache clinic called earlier this week to see if I would be willing to be interviewed again for another TV station. The woman who called wasn’t sure if it’d be a national network (like CNN), a local station (like last week) or for something like an infomercial. I initially told her yes, but when she called back the next day with more details I turned her down since it was difficult, strategically, to get there at the time and day they needed. I told her that if the crew wanted to come down here, or meet somewhere between here and Chicago, I would be more than willing to be interviewed mostly, because vanity aside, being on TV is kind of fun.

While I had her on the phone I asked if they knew yet when the trial would officially get started so I could begin to make some arrangements, and she told me they expected it to be approved (the surgical part of the team) by the second or third week of March for sure, and that she’d send me a packet of information so I could read up on the surgery and have most of my questions answered ahead of time.

In the meantime I’ve been trying to run a fact-finding mission so that I know what to expect. My favorite source for nerve stimulation information is a blog run by a girl that’s had the stimulator for her migraines for probably about two years or more with mixed results. The technology has advanced a lot since she had hers implanted, as far as where the batteries can be implanted, the size of the system, and the placement of leads for the affected area. They’ve also seemed to have worked out some of the kinks since they first came out, so hopefully I’ll have fewer complications and more success if I’m eventually implanted. My goal between now and then is to strike a balance between setting my expectations too high and being realistic enough about the results to not be crushed if it doesn’t work.

Almost Famous…almost

If anything, I tend to be over-prepared for most situations. When a trip away from home necessitates that I take one bottle of a headache medicine, I usually take three. When I might need one tube of lip-balm, my purse is overflowing with four. So when I got to my headache doctor’s office this morning and he asked me if I’d mind being interviewed by a news crew from Chicago’s local Fox station, I found myself feeling woefully unprepared.

The news team was working on a story about nerve stimulators for chronic pain and since I’m hopefully going to be in my clinic’s clinical trial for the device/procedure, and happened to have an appointment today, my doctor thought I’d be a good candidate for an interview.

I’d like to say that I felt unprepared because I didn’t have a rehearsed sound-byte that would prompt other headache patients to beat down their doctor’s door to find out about the surgery.

Had I been thinking when I left the house this morning, I would’ve taken a complete change of clothes. That pink, boatneck top would’ve looked better on camera, and those silver hoops would’ve looked a lot better than naked earlobes. To compensate, I made sure my grandmother’s pearls were prominently on display and not obscured by the collar of my shirt. Mostly, I was concerned that my hair would look too flat and that it would be obvious that I’d been wide awake since 3:00 a.m. and hadn’t spent enough time with the mascara wand covering that up.

The cameraman wanted to be sure to film me while walking and talking to the reporter and through some miracle I managed to do both without running into a wall. Whatever composure I managed to maintain during the interview itself though, I quickly lost when they zoomed in for a close-up of me reading a magazine. To watch me read, you’d think I found Time magazine to be hilarious.

So the moral of the story is this: if I had journalism school to do over again, I would’ve taken at least one broadcasting class. Appearing poised on-camera can’t be rehearsed in a bathroom mirror.

Making myself at home

Original post date: 2/23/06

I had grandiose plans about a year ago when I was first looking into nerve stimulator surgery; that I would start a blog at the beginning of the process as a means of keeping friends and family informed, and so that I could document it for myself in a way that’s more fun than scribbling in a diary.

Little did I know back then, that this process would be so protracted and complicated. Now, after much research and phone calling I’m hoping to get into a clinical trial in a few weeks and get the ball rolling again. And it’s good that I have a few weeks to tinker with – I need to practice saying things to doctors and nurses like: “I’m plugged in and turned on” and “I’m juicing up my battery right now” with a straight face. But who am I kidding, I’ll never be able those things or any variation of them with a straight face, will I?