It’s now been five days since my deep brain stimulator implantation, and some of the fanfare has died down. I had a wonderful outpouring of support from family and friends, and my voicemail, my mailbox, my house, and the hospital waiting room were full leading up to and after the surgery. Now that everyone has gone back home and it’s me and my wife again, I have had some time to think about what this whole process has meant to me and what it could mean for the future. But before that, let me tell you a little bit about what DBS was actually like for me.
I had an early call at the hospital on Thursday morning; the neurosurgeon had asked us to be there no later than 5 AM. He, of course, was arriving somewhat later, but then he’s the one with the medical degree. Making an appointment at 5 AM is much less of a problem for me than it used to be, because I generally see 5 AM from the backside and not the front side. This was true on Thursday as well -another sleepless night, but not with apprehension or anxiety (they typically are not that way, anyway). Just another long night of Parkinson’s insomnia, with a touch of anticipation. Although the likelihood of severe complications for this procedure are very low, I had to assume the worst; so, I had said the things that need to be said, done everything I could think of to do, and was somewhat at peace.
And then I fell asleep. Parkinson’s is like that – just when you think you have it figured out, it throws a backflip and surprises you from behind the door (kind of like my daughter’s cat Clovis. Another story, another time). So, after 18 months of incessant insomnia, I was running late for my DBS surgery because I overslept. My wife saved me from myself, and I got up to take another shower with a wonderful product called Hibiclens. This was the second of my Hibiclens showers, designed to make me less of a threat to myself from infection than I usually am. The primary complication for DBS implantation surgery is infection, and my neurosurgeon was taking great pains to avoid that complication. In general, he had thought through every possible screwup, unforeseen circumstance, and snafu. If anyone would like a nomination for Neurosurgeon of the Century, I’ve got one.
After my leisurely five-minute napalm shower, I threw on some clothes that I thought would be easy to get out of and jumped in the car. We arrived uneventfully at the hospital right at the stroke of 5 for an abbreviated trip through the admissions office. I highly recommend pre-admission; much nicer to do paperwork at 3:30 in the afternoon than 5 in the morning. In rapid sequence we worked our way through surgical admission and then to a holding room for some final medical history and drug interaction discussions. Here it became very clear to me that you can never just give yourself over to the system. After someone had relieved me of yet another vial of blood, I spoke with a nurse about drug allergies and drug interactions. Those of us with Parkinson’s disease have to be very careful of drug interactions, because some of the interactions can be potentially fatal, such as the interaction between Demerol and Azilect. I had a very difficult time helping the nurse to understand that I wasn’t just allergic to Demerol, but that if they gave it to me it would probably kill me. Not that they INTENDED to give me Demerol, of course; however, the longer I talked with her, the more I became certain that as soon as my back was turned they would be stabbing me with a needle full of the stuff. We finally came to an accommodation, with her telling me that they wouldn’t give me any Demerol because “Azilect has Demerol in it, and you’re taking Azilect.” Good enough, I thought to myself. I’ll just let this one go and take the risk. My wife calls me pedantic; I think it’s just prudence.
We made our way into the surgical prep area about 5:45, where they started my IV, with promises of wondrous treats to come with names I didn’t recognize. The surgical nurse told me, “just think of it as a couple of margaritas.” That I could understand. They moved me to a sheltered corner of the surgical prep area, where the first big event of the day would take place – The Shaving. You wouldn’t think it was such a big deal, but it’s kind of a landmark event for someone who’s had a full head of hair for his entire childhood and adult life. I had no idea what they would uncover. A (formerly) good friend of mine told my wife, “if you see the number 666 emerging from the hair, try to pretend that it says 999.” A Biblical scholar and a comedian to boot.
I think I’ve noted an interesting phenomenon; when someone gets their head shaved in the hospital, EVERYBODY shows up. My wife, my daughter, the neurosurgeon’s entire surgical team, the medical device rep (who is a friend and colleague), the nursing staff, the orderlies, and some guy named Bob all were standing around watching as I got my head shaved. And to answer a question that I’d had for some time, the neurosurgeon did the shaving. Apparently it’s all just part of the procedure.
The Shaving went uneventfully for the most part, with lots of laughing and joking and comments about the emerging smoothness of my skull. The only comment that really stands out came from the neurosurgeon, who apparently moonlights as a standup comedian.
“I’ve never seen anybody with hair this thick,” he said. “You’ve got hair like a chinchilla.”
Probably not the first time he has said that, but definitely the first time it’s been said to me.
I didn’t get much time to enjoy my new smoothness. Very soon after The Shaving was done my wife and daughter were escorted off to the waiting room, and the serious work began. The next major step was installation of the stereotactic frame, which involved local anesthetic, large chunks of machined metal, and some of the biggest screws that I’ve ever had screwed into my head.By this time the “margarita” drugs had started to flow, so my reaction to the process was something like, “OWW!! That hurt..wha? Hmmm.”
They got the contraption firmly anchored to my skull, and then begin wheeling me down the corridor towards the operating theater. I vaguely remember as we were rolling that the anesthesiologist kept having to tell me, “you don’t have to hold your head up off the gurney. Just relax.” Yeah, right. Relax.
We arrived in the operating theater, and things got a little fuzzier. I was actually awake for most of the procedure: from the local anesthetic in my scalp, to the installation of the rest of the stereotactic system (the neurologist told me, “Sorry this is mashing your nose a little.” I think I remember saying, “No biggie; I’m not using it for anything right now anyway”), to the distinctive sound of the surgical drill drilling quarter-sized holes in the top of my skull, I remember it all. I remember knowing that they had started to implant electrodes in my brain, and being astounded that, by gosh, they were right – it didn’t hurt at all! With the support of modern pharmaceuticals, I was supremely unconcerned by the whole thing.
I was also reportedly “pretty chatty” during the first part of the procedure so, perhaps in part to shut me up, they put me to sleep to implant the stimulator in my chest. The overall procedure was somewhat shorter than usual because, according to the neurosurgeon, the electrode placement and the data that they gathered were “just fantastic” and they didn’t need to go through the neurological testing process that they usually need to to verify placement of the electrodes. That’s one of my strongest memories of the whole procedure – the neurosurgeon muttering to himself, “fantastic, just outstanding, this is wonderful, superb.” Not a bad memory.
I woke up in the recovery room after what seemed like only minutes with the recovery nurse leaning over me saying, “well, I see you’re back.” Only short time later my wife came into the recovery room and we sat together for a while before they asked her to leave (which pleased her not at all). I spent a long time in recovery (short staffing more than anything else). My only recreation was being repeatedly reminded to breathe. The anesthesia they used depresses respiration, so the nurse kept having to tell me, “Corey, breathe deeper. Corey, you’re not breathing. You need to breathe, Corey.”I kept thinking, “Can’t you leave me alone? I’m trying to sleep here.”
After I left recovery, I headed to the neurological progressive care unit, where I stayed for about 36 hours. My family and friends dropped in to wish me well or to make fun of my new look (sometimes both) or to go on walks with me around the corridors. I left the hospital on Friday, just a day and a half after major brain surgery (and what brain surgery isn’t major?). I could make comments about advances in modern medicine, but I think it’s more likely that the insurance companies are driving short hospital stays for major medical procedures. No complaints; I was ready to come home.
Since being home, I’ve noticed some effects, both positive and negative, from the procedure. On the positive side, I’ve seen evidence of “the lesioning effect.” Implantation of electrodes causes some minor damage to the area around the subthalamic nucleus that can have beneficial effects. It fades over time, but for the last two days, even considering that I have not reduced medication, I’ve been able to do the neurological testing finger taps with my left hand like I have not been able to for the past two years. Whether it’s accurate or not, it gives me hope for the eventual success of the stimulation therapy. The system is not turned on yet; that won’t happen for several more weeks. I’m very optimistic about what happens then, though.
On the negative side, I have to admit to some cognitive impacts. There are those who say that I’m always confused; however, even I notice it now. I think more slowly, it’s more difficult for me to start and finish things, and I fall asleep with no provocation at all. It’s transient and probably wont last more than a few days. Maybe I’m just recovering from 18 months worth of insomnia. Perhaps I’ll try something new and not overthink it.
In the longer term, I believe strongly that what having this surgery has done is to create time. It’s made time for the biomedical research community to find a cure that can help me and others like me, and even if that doesn’t happen, it’s given me time to live a fuller, more productive life with the people that I love, doing the things that are meaningful to me for as long as I can. I’m grateful for that time, and I don’t intend to waste it.
This is only the first step in a long process, one that many have been through before me. I’ll continue to tell you what it looks like from here for as long as you’re willing to listen.
© 2011 Corey D. King