For the first time in two years I have gone for more than two days in a row without a headache. In fact, it’s been five days since I had a real one – or one that required medication. My surgeon implanted an occipital nerve stimulator last Thursday morning, and aside from the predictable and treatable incision and muscle soreness, my head has been 90% pain-free. The only slip-up was this morning when I woke up to find that my two wires got tangled up and detached in the middle of the night. But once I hooked them back up and turned the device back up, the headache vanished. If I weren’t wearing a hideous soft cervical collar and banned from any neck or back movement, I would’ve done cartwheels all over my room. But let’s back up a bit.
As I’ve mentioned in other posts, I’ve been included in a clinical study/research trial for occipital nerve stimulation for the treatment of chronic migraines. After much waiting the first part of the surgery was scheduled and completed last week. For the first surgery I received only local anesthesia and light sedation so that I could be awake enough during the procedure for the doctors and representatives from the stimulator’s company to talk to me. This was the part of the procedure where the doctors place the electrodes and leads that rest near the occipital nerve, which runs around the back of your head. After several numbing shots they slipped the leads under my skin and then anchored them down depending on once I told them I could feel the stimulation/current. The leads end up being placed somewhere behind my ear, but I can feel the stimulation running from my neck to near the crown of my head, resulting in what they consider to be excellent coverage.
Then, once the leads were placed in my head, the wires attached to them had to be tunneled down my neck and back and connected to a trial stimulator worn on a belt around my waist. Normally, since this is the trial period, the wires are external for a week before they get tunneled. However, the doctor gave me the option of getting most of the tunneling out of the way during the first part, so I said yes. As sedated as I was when he asked, I probably would’ve consented to harvesting my kidneys too. So instead of the wires being run just to my neck, they run all the way down my back, to the trial stimulator. The hard part is already over. For the second surgery on Thursday all they have to do is permanently install the battery/stimulator in my back, near my waist. This time, thankfully, I get general anesthesia and won’t remember a thing. After waiting around the recovery room for a few hours they sent me home Thursday afternoon with vicodin and antibiotics. But I’m pretty sure I’ll be there overnight this time though.
Since I’ve never had to recover from any other kind of surgery in the past, I’m not sure whether this ranks as difficult or not. It took me three days to figure out how to lay comfortably on my side, and once I did, I slept so much better. Laying flat on my back, un-reclined, is still unfathomable. I’m still having trouble remaining in one position for too long, but I’ve been able to cut way back on pain meds and save them for bedtime. I have to wear this soft collar for a week to remind me not to twist my head or my neck in order to prevent the leads from slipping out of place. Over time the leads will become locked into place better as the muscle and tissue grow around them, and some “lead migration” is expected but can be corrected by re-programming the stimulator.
I was told to keep the stimulator on, at some level, all the time, as keeping it on helps prevent headaches from even getting started. And if I feel one start to come on, I just increase the stimulation with the little remote control which I’m going to have to get used to carrying. I don’t find the stimulation painful at all except when I crank it up, but since the incisions are still sore and inflamed, that’s too be expected and will improve also. Even at low settings I feel the stimulation all the time, and all it consists of is a tingly feeling. It feels just like a TENS unit all the time. Without the remote control I can still feel an increase in stimulation if I stand up, sit down, touch my head, chew, swallow, bend over, turn either way, lay down, sit up straighter, or move at all, basically.
The hardest part, honestly, is not being able to wash my hair for a couple weeks or take a shower. Instead, I’m waiting anxiously for the spray-in shampoo that I ordered online and am counting the days till I can steam up the bathroom again.
Finally, I learned yesterday that another camera crew may be present for the second surgery as some news crew is interested in doing another story about nerve stimulation and headaches, so I had to sign a release authorizing my consent. Another woman going through this process is going to be interviewed and my name or face won’t ever be used in the segment.
