The Waiting Game

I am thrilled to report that Phase 1 and Phase 2 of my DBS surgery are now complete, and both went incredibly well. Phase 1 was the actual brain surgery and placement of the electrodes, and Phase 2 was when the wires were run from my scalp down into my chest cavity, and were then plugged into the pair of stimulators that now reside just beneath each of my collarbones. It’s been two weeks since my second surgery, and I am healing up beautifully. But the problem is, everyone keeps asking how I’m feeling.

Now normally that would be a nice thing. But one of the weirdest things about this very weird process is this lull between the surgery and the payoff—when the system is finally turned on. Normally when someone has a surgery, they go to the hospital, they have the procedure, and as they heal, they start to feel better. Not so with DBS.

I want to say that when I “woke up” from Phase 1, I felt great. But since I was awake the whole time (under conscious sedation), I never actually went to sleep for Phase 1. Being awake throughout the surgery was its own surreal experience. But I can say that the best part of that surgery was at the end, when they powered up my system to test it. Just before that point, I had experienced an uncomfortable cramp on the left side of my lower back. I couldn't really adjust my position to relieve it because my head was in a “cage” bolted to the table, so I was just breathing through the pain of the cramp.

They had just finished placing the electrodes in the right hemisphere of my brain so they plugged me in and told me to tell them when I could feel a vibration in my left side—because the right side of your brain controls the left side of your body.

Once I told them I could feel it, they changed the settings until I indicated that I could no longer feel it. Then they had me do some of the standard neuro tests: raise my arms, twist my wrists back and forth rapidly, show my teeth, stick out my tongue. They did this same series of tests four times, and then began the drilling-testing-placement process again for the left side of my brain.

As the doctors continued their work, I soon noticed that my back didn’t hurt anymore. As I felt the relief, I realized that my muscles had actually fully relaxed for what seemed like the first time in years. I felt relaxed throughout the rest of the procedure. When they finished wiring up the left side of my brain, they did the same testing on my right side. Both sides felt loose and mobile and performed every task perfectly. And by this point it was at least 18 hours since my last medication.

In the recovery room, my BP was a little elevated, and they wouldn’t release me from the recovery area until it went down. The longer I had to wait, the worse it seemed to be getting. Finally, my awesome nurse Julie suggested I go to the bathroom. I had to go, because they’d pumped me full of fluids in the OR. Julie said she would help. Now, I loved Julie, who did my post-op for both surgeries, but Julie weighs about 96 pounds soaking wet. With her urging, however, I tentatively pulled myself up to a seated position, and then to my feet, and then I was walking. Well, shuffling, to be exact, but it wasn’t too bad. I made it the 20 or so yards to the bathroom, and walking back I did even better. Within 20 minutes, my BP had dropped enough so they could send me upstairs to a room for the night.

I didn’t really sleep that night. Hospitals, of course, don’t let you sleep well, with all those checks on your vitals, and my roommate didn’t speak English and was having a very hard time with her own issues. In part to pass the time, and in part because I was still pumped full of fluids, I got up four or five times, and each time I could walk easily on my own to the bathroom, which wasn’t a straight shot. I had to negotiate a privacy curtain, an armchair, and around the door which opened into the bathroom—things that normally had made my life miserable if I had to navigate them. By this time I was back on the minimum dosage of my meds. For months, the minimum dosage hadn’t been nearly enough to get me moving properly. Yet somehow, now, I was moving really well.

I was let out early the next day, and was thrilled to go home. My dad had come up from Florida to help take care of me for the week, while my husband went back to work. I felt stronger and better every day. I felt bad that my dad had come all that way just to watch me drink milkshakes and eat pasta, but hey, brain surgery is hungry work. I had been forewarned about this post-op “honeymoon” effect, when most people who have this procedure have a period of about 2 to 7 days after surgery when they feel great. I got 10 days.

I mostly felt tired for the first few days, which had me a little concerned. But I had been in Las Vegas for five days at a conference the week before, had been awake for two days during the surgery, and then, you know, I did have brain surgery. I mostly slept a lot, but had remarked to my husband, my dad, and my doctor that I might be having some kind of “honeymoon” period. I didn't feel amazing, but I also never really felt bad, Parkinson’s-wise. I was still taking minimal medication, and had to remind myself to take it, because I wasn’t falling off a cliff every four hours when it wore off.

Then I woke up on Day 10 and realized that I had indeed been experiencing a honeymoon, because it was suddenly over. Since then, I’ve felt just as bad as I did before the surgery, and maybe even a little worse, because although the procedure is over and done with, the anticipated benefit hasn’t happened yet. In the first few post-op days, people asked how I felt, and because I felt pretty good, I told them so. But now I’m back to reality, which is a huge disappointment, even though I knew it was coming. Now when people ask how I’m doing, I don’t quite know what to say. I know they expect me to feel good, and it’s confusing that I feel worse today than I did three days after surgery.

I spoke to my surgeon today at my post-op appointment, and he said it was a great sign that I felt such fluidity of movement in the OR, and that I had 10 days of a honeymoon period. But I’m still kind of white-knuckling it until November 13, when I go to my neurologist to get my system turned on. Nevertheless, I still feel optimistic, because I know I’ve done most of the painful and scary stuff to get to feeling good. But I’m just not quite there yet…