8/29/2018

Update to "The New Normal: Living Under the Sword of Damocles"

Back in May, I wrote a post, "The New Normal: Living Under the Sword of Damocles", detailing medical issues that posed a potentially fatal danger for my wife Hilde. At that time, we were postponing surgery until further developments made the situation even more critical. (Failing sections of cervical reconstruction hardware from a 2001 surgery had shifted to where there was a large lump and a pinhole-sized tear on the back of her neck, creating a potential entry point for spinal cord or brain infection.)

That "further development" happened in June, when further shifting enlarged the tear and allowed actual metal to come out through Hilde's neck skin.

(I have photos I took to let Hilde see what was happening back there, but they're kind of alarming -- "Oh  shit, your wife is a Terminator! Run, Bruce, run!" -- so I won't post any. The full piece of hardware was several inches long and about the width and thickness of a popsicle stick, but only about 3mm of the tip projected outside her skin. That was plenty alarming, though, he understated.)

So... more x-rays, tests, consultations with her doctors at Mayo, etc. While those were going on, we kept the wound slathered with antibiotic ointment and covered with a dressing; super-stretchy surgical tubing, worn like a headband, kept the gauze pad in location on the awkward spot.

We also used the weeks while a surgical plan was developed to try to prepare for the worst possible outcomes. We had our wills updated, set up a living trust for our property and possessions, and had Durable Power of Attorney and Advanced Medical Directives drawn up so decisions could be made and documents signed in the event of our incapacitation. (This was all stuff we should have gotten done much sooner, but I guess it took a medical crisis to build our motivation to critical mass. Don't wait 'til the last moment yourself, folks!)

The Plan B for surgery that eventually developed was less drastic than originally envisioned. The original plan intended to remove most or all the failing hardware, but this would also leave Hilde's neck and spinal column in a precarious condition, likely to eventually fail and result in quadriplegia and/or death.

Plan B was to leave most of the hardware "Abandoned In Place". The actual projecting piece of metal (and its matching piece on the right side of Hilde's neck, which was close to coming through the skin there) would be trimmed back as far as was safe, a plastic surgeon would take a thin flap from the trapezius muscle and place it over the surgical area (this increases blood flow and promotes healing; it was expected that Hilde's normal wound recovery ability would be compromised by years of steroid medications), and the wound closed.

Plan B would mean a shorter time in surgery, less trauma to her body, and *some* reduction in risks and complications. Less chance of the neck destabilizing post-surgery, for one. But the neurosurgeon's primary concern was over the stenosis in Hilde's cervical spine (the "dog-leg turn" I mentioned in the May post) that was already putting pressure on her spinal cord in several places; her fear was that anesthesia might cause Hilde's blood pressure to crash, reducing blood flow to the already restricted parts of the spinal cord and starving it of oxygen, which might still result in quadriplegia or death. So... less risky, but still a high-risk surgery.

The Plan B surgery took place, yesterday, August 28th. Let's skip any more suspense: the surgery was successful; Hilde came out of it awake and aware and without losing the rest of mobility and movement she has left after fifty years of rheumatoid arthritis.

Not without a few moments of drama, though. When Hilde was turned over for the surgery, the crash in blood pressure the neurosurgeon had feared began to occur. But they were able to reposition her and get the BP back up to acceptable levels before any permanent damage occurred, and the rest of the operation went smoothly. The trapezius-flap procedure was left undone; Hilde's skin and muscle tone looked better than expected and skipping the procedure shortened the time in surgery and reduced the possibility of further blood pressure problems.

So... it looks like we'll end up with a reset to the end of last year, before the skin tear developed. This is, to put it very lightly, a relief. But the months of anxiety and dread (at least on my part; Hilde was stoic, I was terrified) came with a few lessons:

Most importantly, get your affairs and papers in order now. Even though this was a slowly building crisis, one that gave us months to try and prepare for the worst, there's always things you'll forget or not get done. Spending part of last weekend drawing up a list of people to notify if Hilde died in surgery was not a fun activity, but one that had to be done. If this had developed as a sudden emergency, we'd have been much more unprepared.

I'd probably have been more efficient at preparing for the worst if I hadn't resisted taking anti-anxiety medication. There were so many times I felt close to panic; it's hard to focus when your mind keeps going "What if...? What if...? What if...?" and it feels like a pile of rocks is sitting on your chest.

Thanks to everyone who gave us their best wishes and hopes during this time.

1 comment:

Katt Clay said...

So sorry to hear it got to this point. But also happy that the Mayo Clinic is there to help her. She is right, it has always seemed like the best place for her care. I hope Hilde's recovery and the future are much smoother.

PS, kinda surprised you all didn't start thinking the paper stuff after Anne passed.