“I’d propose,” said Doc David, “A very different course.”
Six words. Life-changing words, words that open up a whole new dialogue with Elmo, the knee replacement I’d planned to divorce on July 28.
Six words that could cost me my house, a bunch of pain, a chunk of retirement money, oodles of work… but give back the ability to walk. Life sans wheelchair, which brings up that nagging, surprisingly political (these days) question:
Exactly how much is a leg worth? I’m about to find out.
On Friday night, Sept. 16, 2016, I fractured my left femur just above Elmo, my replacement knee. I lived in a wheelchair, facing hip-high amputation of my left leg, for about two years while I fought health care bureaucracy, cost-conscious HMOs, and myself to figure out a way to walk again. (Spoiler alert: Elmo won!)
I documented my adventures in remobilization in this blog. They’re awfully self-indulgent, occasionally icky, and probably only of interest to me, but on the off-chance that they help someone else with a catastrophic injury, I’m keeping them together here. If you don’t want to read them, that’s OK; I still love you. If you do, you might want to start from the beginning, on the archive page that lists all posts.
My sister Suzanne and I just got back from a trip to Stanford, and the University of Utah, seeking alternatives to what’s blithely called “revision surgery for nonunion femoral fracture” using a “distal-femoral implant.” If you’ve been following Elmo’s adventures, you’ll know that in the last month or so things have gone a bit dire; the steel plate holding Elmo’s fracture together is giving way.
When it breaks, it’ll be like busting that femur all over again, only worse. To prevent it, The Doc and his allies have proposed the distal femoral implant. It’s a sad last resort, because the implants generally don’t last and when they go, so does The Leg.
Our whirlwind orthopaedics trip was a last-ditch attempt to see if anything, ANYthing, could be done to save Elmo and The Leg. I honestly didn’t expect much, but it was gonna be hard to face my errant bodyparts if I didn’t at least try to find a better solution.
My sister Becky jumped into research–she has been dealing with exotic medical issues for so long that she knows most of the elite specialists in the country–and produced recommendations for the best with “femoral nonunions.” Stanford, University of Washington Harborview (still awaiting a verdict there), and University of Utah topped the list.
Doc David, at Stanford, is said to be the best in the country at fixing nonunions, so we started there. I loaded all 600 pages of my medical records into my laptop, handed them two CD-fuls of x-rays and CT scans, and tried to stay calm in the exam room, reciting my medical history to a strange doctor.
He stopped me at “sustained an open, comminuted fracture of the left distal…” “Let’s just keep it,” he said, grinning, “At ‘you broke your leg.'”
Doc David listened, plowed through the operative reports, thumbed up and down my CT scan like an animator testing cels. Then he dropped a bombshell:
“If it were my leg, I would NOT opt for that implant, not yet. And if it was indicated, I wouldn’t choose the one that’s proposed.”
“You’re too young and active, and you’re right; sooner or later you’d need amputation when the implant failed. The cement is what does it,” he said, “Your doctors have done a good job but it’s nowhere near aggressive enough for a gap that big.”
I mentioned that Dr. Jack, the traumatologist, had said there wasn’t enough good bone left to stabilize. “I’m a traumatologist, too, and I disagree. We do these all the time.”
“My gut feeling is you have a low-grade infection that’s preventing growth, probably some other factors too that we can correct, and that gap is simply too big for a conventional graft,” he said, matter-of-factly, “Would you accept shortening your leg by an inch?”
Instead of eventually shortening it by 36 inches? Uhm…gimmea sec to think…YUP.
“OK,” he said, “I would do this in stages. First, we make sure there’s no infection in there, clean out the graft that’s there, pack the area with antibiotic, and monitor you for six to eight weeks. At the end of that time, we prove there’s no infection left, and do the big surgery.”
“We shorten the gap in the bone, then go in with pure graft material this time, no allograft (somebody else’s stuff), and pack it absolutely full. Then we replace your failing plate, get you on a good nutritional regimen for bone growth, and make sure you’re seeing a psychologist.
Come again? Are we talking about my leg or my head?
“You’re on an emotional rollercoaster,” he said patiently, “And you’ve been riding it for nearly a year. You’ll heal better if you have someone to help you cope. Trust me on this. Oh, and we take you OFF the Meloxicam Kaiser is giving you; it retards bone growth.””
Wow. OK. So when do we start?
“We don’t, not yet anyway,” he said, holding up a hand. “Rule number one: NEVER make life-changing decisions in a doctor’s office. Take a few days to think about this.”
“Rule number two: There are probably eight surgeons in the world qualified to do what you need, and I’m only one of them. If you don’t have insurance, this will be unbelievably expensive. I’ve trained some pretty great students who can do the job at less than Stanford prices.” And he named names.
“You’re going to University of Utah next, right? Really great guys there. They invented the only distal femoral implant I’d recommend that you use if it gets to that: The Compass. Talk to them first, before you decide.”
OK. I think I like Doc David. He’ll never be The Doc, but I like him a lot.
He introduced me to Sandra-the-Scheduler, who talked financials–at $150K per operation, and two ops, we’re talking the price of a nice house to get my leg back. Kaiser, my HMO, could refuse to cover it (more about that later). If that happens, the price of the operations, hospitalizations, and such, plus incidentals like Bay area lodging, physical therapy, and a probable stay in a skilled nursing facility, come out of my pocket.
How much is a left leg worth? Good question.
Doc David would be available for the big, post-antibioticthing surgery in the fall, only two months away, and there would be a LOT of logistics to manage before then.
I’d need to live in the Bay area, non-weight-bearing, for at least eight weeks. I’d need to come up with a LOT of cash. I’d need to do some weight-losing (I’ve gained weight like crazy in this wheelchair), and nutrition-building, get my blood levels and vitamin D up, stuff like that.
But…I nearly canceled this trip because I thought I’d hear the same sad conclusions. Now all I can think about is…how close I came to losing Elmo too soon… assuming, of course, a left leg is worth $300,000.
Is it? I certainly seem to think so at the moment. But it makes you think…
University of Utah in the next installment.