Going home after the surgery was great. I must say, planned/elective brain surgery is the way to go. If you need emergency/you-have-no-other-options brain surgery, it’s usually a sign that something really bad has happened. Thoughtful planning is the way to go, if you have a choice.
I was happy to be home, even though I was exhausted. I mostly slept a lot the first two days. I had been forewarned about a post-operative “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 wasn’t sure if I was having one, because I didn't feel amazing, but I also never really felt bad, Parkinson’s-wise. Then I woke up on Day 10 and realized that I had indeed been experiencing a honeymoon, because it was suddenly over. The wait between the end of the honeymoon and bring turned on was excruciating, which I discussed in my blog The Waiting Game. But before the honeymoon was over, I was back in the OR for Phase 2.
Exactly a week after my first surgery, my husband and I were back at the hospital at 6 am. (My dad had since returned to Florida.) I was feeling okay in my honeymoon state, and had been telling myself this was the easy part. And although it was easier in some ways, it was also more traumatic in other ways. Once upstairs, I was taken to the same curtained cubicle, told to put on my gown and socks, and was given a warm blanket. Only this time after I heard, “We’re going to relax you a little” and I received some sort of sedative through my IV, I didn’t remember anything after that. Nada. Not being asked to take a deep breath of the anesthesia and count back from 10, not being wheeled down the hall, not being in the OR, and not being wheeled into post-op. When I woke up, Julie, the recovery nurse from my first surgery, was there taking care of me again. But this time I really hurt.
When I was first learning about DBS, the word that all the medical folks used for running the wires from your scalp to your battery packs and devices in your chest was “tunneling.” I kept thinking it was such an ugly word; I didn’t want to think about people “tunneling” through my neck and into my chest. How about “creating a pathway” or something less invasive-sounding and scary? But when I woke up, I knew exactly what they meant by tunnel. It was quite invasive, and I was really sore. And when you think about it, it’s quite a distance between the upper part of your scalp and your clavicle, with a lot of muscles needing to be gingerly moved aside so the tiny wire can be guided through. I also hadn’t thought much about the considerable cutting that would be required. I had two new incisions on my head, bringing the total to four: two on top for the implantation of the leads, and two on the sides to attach to the wires and run them down behind my ears, through my neck, and into my chest. Plus I had two 3-inch incisions in my chest, where they had created two oval-shaped pockets in my chest for the two devices, each one about 2 ½ inches long.
Of course, once they gave me some more pain medicine, I began to feel pretty good, so I was able to get dressed and go home. Julie told me to take it easy and be patient with myself, because I did, after all, have “foreign bodies” inside me. Hearing her say that sort of gave me pause. They were fairly benign foreign bodies, so I was unlikely to reject them. But there were a lot of new things my body was getting used to having inside it, in addition to healing. I”m not the world's most patient person, especially with myself, so PD in general has always been a real challenge. And now, having had surgeries and implantations, those added a whole new dimension to the healing process.
And Julie was right. I was totally exhausted and took a 5-hour nap that afternoon, before getting up for a while and then going to bed for the night at about 8 pm. I was still a bit bruised and achy the following morning, primarily because the total incision closure count on my head was a whopping 38: 4 staples on the left side,13 staples on the top left, 15 staples on the top right, 3 staples on the right side, and 3 stitches on the right side. My chest incisions were closed internally with disintegrating stitches, but externally they were closed with Dermabond—a sort of Superglue that wears off gradually over a 3 to 4 week period as you heal, which will leave very small scars. So now I really had come through the worst of it, and that meant I was now smack in the middle of The Waiting Game.
You can find the rest of my Bionic Woman series here: