It’s been longer since my last post than ever before. I wish I could say that it’s because I’e been so busy managing my complex social schedule, or that I just don’t have any time to write between my obligations as a recent Mega-Millions lottery winner and my role as a rock star-scientist-commando-philanthropist from the eighth dimension. I promised you honesty, though, and that ain’t it. The truth is that I’ve been dealing with personal issues related to my recent surgical procedure to replace my DBS system.
There were shorts in the electrodes of the existing system, initially implanted to control the worst of my Parkinson’s symptoms; I’m not sure where they came from, but they prevented the full range of programming options normally available. If the shorted electrodes were to be included in the stimulation program the computer in my chest used to ease some of my Parkinson’s symptoms, the electricity would just disappear with no beneficial effect, and the battery that powers the whole contraption would only last a few months as opposed to the five years that the brochure promises.
Even with the shorts, the system was working tolerably well. The stimulation settings were high enough that I typically burned through my five-year battery in about eighteen months, but battery replacements weren’t that much of a burden, and good enough is…good enough, right? I would have been happy to maintain the status quo, but that’s never an option. Something always stirs the pot.
My DBS system (which is, among other things, a big chunk of metal in my head and chest) is, under normal circumstances, “MRI certified.” That means that, under carefully controlled conditions, with the system turned off, and with the proper animal sacrifices having been made to the proper pagan gods, I can have a diagnostic imaging test called an MRI done without burning out my brain or causing inconvenient parts of the DBS system to emerge from my body at high speed. (That’s apparently what happens if you have an MRI without kowtowing to the DBS gods. Who knew?)
However, if there are malfunctions in the DBS system of any kind, then the “limitation of liability” gods take precedence, and your DBS system is no longer MRI certified. It would probably be just fine to have an MRI under these conditions but, in the unfortunate event that my internally implanted system suddenly became external or my brain began to smoke, someone would need to be blamed. No one (including me) wanted it to be them. As a result, an MRI with my then-current DBS system was not possible.
This situation was just fine with me, until I needed an MRI to diagnose an unrelated medical problem. The only alternatives were to have a biopsy done in an inconvenient and unpleasant location (no, not New Jersey), or to have my DBS system replaced with one that didn’t have malfunctions and was thus MRI certified. I chose the second approach, thinking that I’d already had experience with the violation of my brain, and I was a pro at brain surgery. Flawed logic, to say the least.
So I opted for a little recreational brain surgery to avoid an unpleasant and painful biopsy on a part of my anatomy which is, to put it mildly, somewhat distant from my brain, reasoning that I’d been through brain surgery before, and it was no big deal.
Important safety tip and life lesson – brain surgery is ALWAYS a big deal. There’s a reason why EVERYTHING is compared to brain surgery; brain surgery is the ultimate in complex procedures, and has arguably the most potential for adverse side effects. With any kind of surgical invasion into the complex mechanism of your body, there are risks to be weighed. But with DBS brain surgery, there are two additional factors to consider: (1) we don’t really know, when all the shouting is done, how the brain works or why DBS works, and (2) it’s BRAIN SURGERY, for Pete’s sake.
I have been remarkably lucky – I have no right to it, but I’ll take it. I’m left with some deficits, but they seem to be resolving with various kinds of therapies. The most disturbing to me are the impacts on my ability to speak, although there are other disturbing changes as well, such as impacts to gait, cognition, and short-term memory. And, not all of my deficits are attributable, without doubt, to the replacement of my DBS system. I do have a degenerative neurological disease, after all – maybe it was just time for these degenerative changes to occur.
The most disturbing element of the whole experience was not having the DBS system available for a while, though. I didn’t realize how much it was helping, or how much I had grown to rely on it. After the surgery was complete, they left the system off for a while to let me recover. I wasn’t just uncomfortable; I was constantly near panic. Amy recognized it for what it was, and became my cheerleader and advocate for living with the lack of DBS support for as long as I could (not long), and for turning the system on and tuning properly as quickly as possible.
She used a term I hadn’t heard before – she asked if I felt “locked in.” That hits the feeling almost squarely on the head, but my inability to move, speak, or even think triggered a fear I’ve had since childhood – claustrophobia. I’m not afraid of tight spaces, per se – just of being restricted, of being unable to move freely. In the time I’ve had to think about my response to my decreased capability, I realize that what I’m feeling is a kind of claustrophobia that I can’t escape, because it’s imposed by my own body and brain.
I’m lucky, yes – for medical technology that works for me, for a medical team that’s both skilled and compassionate, and for a wonderful wife and care partner who knows what’s wrong even if I have trouble telling her. I’m lucky to have a family that cares, and doesn’t hover too much. I’m lucky to have outlets like SA Moves and the Davis Phinney Foundation, which help me stay tied to the world around me and participate in it, and for boxing, cycling, and Pilates, which help me to beat back the feelings of existential claustrophobia that have started to torment me.
I’m lucky for all of you, too – thanks for hanging in there with me this far. We’re not done yet – this is just another challenge to overcome, and we’ve got a good track record of overcoming challenges so far.
Onward through the fog…