What’s going on?
Brain surgery is weird, but family gatherings are not.
I’m overdue in posting an update - the death of my father has put me into more of a funk than I expected. But nothing distracts from family death like recovering from brain surgery, and since I’m getting frequent queries about the state of my health (physical, mental, emotional) and on what’s next, here’s the scoop.
In general, recovery is going well. No infection in my sutures, my head has gone from ‘bald with highly visible scars that are very tender to the touch and require careful positioning in order to sleep’ to ‘fuzzy with scars mostly not visible and mostly not tender to the touch.’ That said, there are still sutures that I’m told are supposed to dissolve but feel like little bits of fishing wire looped into my scalp and sticking out of my head. In addition, the cold has made my scalp itchy which means that sleeping continues to require careful positioning of my head along with careful application of moisturizer to my scalp.
As expected, the main point of soreness has been the right side of my head, kind of behind the ear, where the leads from the DBS device come together and go down the side of my head and neck to the battery. The sensation of those wires is probably the strangest, along with the solid, metallic feel of the battery is under my chest, which somehow I did not expect to feel so clearly. Those stitches are healing well, and I have good mobility in my right arm and shoulder, but I’m not able to fully stretch on that side yet.
What is most surprising is that when I over-exert myself, physically or mentally, my head / stitches feel ‘weird.’ There’s a kind of pulling across my whole scalp, and it all feels somewhat puffy and generally unhappy. This bundle of sensations seems to be gradually getting better with time which leads me to believe that the weirdness is real and not imaginary.
What’s next:
Kate 2.0 is in Beta until the go-live date of January 8. On January 4, I go for a CT scan and then meet with the neurosurgeon (Dr. Shervin Rahimpor at UofU) to confirm that all is well with the device. Then on January 8, I meet with Dr. Panagiotis Kassavetis & Meghan Zorn, PA, also at UofU, to turn on and tune the DBS device. That’s when the magic happens - if all goes well.
I’m not exactly sure what to hope for - with any syndrome as complex as Parkinson’s there are few definitive answers. DBS seems to work for most people but there’s tremendous variation in the overall impact. Will I be an overachiever who gets to discontinue medication because my tremors and stiffness and slowness have disappeared? Or will I be more typical and experience moderate relief with the device, and continue on with reduced medication? Or will I be an outlier, where the device really doesn’t have much impact at all? My rational brain keeps saying that, based on the testing during surgery, that this last outcome is highly unlikely. But my lizard brain - it goes back to Leslie Jones screaming in my head.
How am I doing? In general, really well. Despite the bizarreness of brain surgery and recovery and the sight of my shaved head, the whole process has been smooth and not at all distressing. We had a great Christmas with our kids and have been able to catch up with various friends and family for the holidays. I’m grateful to have the time and space to relax and allow my body to heal, allow myself time to understand what is happening and what will happen. It’s a new sensation for me, one that I’m enjoying and learning from.
I’m looking forward to 2024 - for once, it really will be a ‘new’ me for a new year.