Tripping the light surgical: Saving Elmo II

>>>Tripping the light surgical: Saving Elmo II

“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.

The Elmo stories (of Elmo, my replacement knee and then the fight to save him when I smashed my femur) have been going on for more than two years now. People ask to read them start to finish, so I’ve set up this Saving Elmo index page to let you view the whole series in one swell foop.

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.'”

OK. Simpatico.

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.”

Clunk. What?

“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.

 

2017-11-29T10:20:35+00:00

12 Comments

  1. Kelly Yeats July 16, 2017 at 8:26 pm - Reply

    You know the glass community is a strong one, and we’re all pulling for you. Crowd fund this sucker, let some of us put together some swag for Lola – I think that out of pocket stuff is gone, if it comes to that…
    Godspeed and best wishes to you.

  2. Stephen Richard July 16, 2017 at 12:22 am - Reply

    Cynthia, I cried over the choices you have to make. My continued wishes for a good outcome.

  3. Jill Wilson July 15, 2017 at 6:53 pm - Reply

    Cynthia, your blog has so many followers that crowd funding seems like an obvious start. Plus, we all need “Lola” merchandise. It seems like a good distraction to start working on Lola’s merchandise line or a book of cat antics while going through the surgeries and rehab again.

  4. Gloria Badiner July 15, 2017 at 10:07 am - Reply

    One step forward. One giant leap for Elmo. So glad you are seeking opinions, best decisions made with knowledge of the choices and risks. Best to you Cynthia.

  5. sandi uhlman July 15, 2017 at 9:12 am - Reply

    wow just wow what an amazing story! You are such a great writer. Why dont you set up a fund me account and write your story .People love to help. Whatever happens….you have the attitude to make it work. Get a floor level apt and bring yer kitties. I sold my house got rid of things and moved into a condo. It is very freeing and you dont need stuff. We are rooting for you sandi

  6. ellen abbott July 15, 2017 at 6:17 am - Reply

    just when you think you’ve run out of options. $300,000 for a leg? absolutely worth it even if it does come out an inch shorter. I know a go fund me page has been suggested on FB. we’re here to help.

  7. Connie Gates July 15, 2017 at 6:14 am - Reply

    Wowie wow! Thank God for the new news. I am a gambler at heart and one that never quits on anything. If it were me, I would take the chance—what is money compared to a more quality and enriched life? My career was at the University of Utah—the medical research that goes on there is mind boggling. I hope they provide you with as good an experience, as Stanford was able to offer. Positive thoughts for you!

  8. Tammy July 15, 2017 at 2:31 am - Reply

    Unexpected positive possibilities. Thank heavens. Don’t count Kaiser out. In general, a health insurance contract is to “restore bodily function” which is why cosmetic surgery is rarely covered. Each contract, the contract your employer signed, is different so more advocating, tail chasing, irritating conversations later and hoop jumping, you may find Kaiser will pay. If you don’t have one now, request a Senior Case Manager, a single point of contact with the insurance company.

    The choices, decisions you face are daunting. I admire your strength, courage and humor. Good luck.

  9. carenashfordCaren ashford July 15, 2017 at 1:15 am - Reply

    Wow….we are just so lucky here, the govt just picks up the tab for any medical….so sorry you have to consider giving up your home…..I live in a powerchair so do understand .

  10. tbachblog July 14, 2017 at 11:03 pm - Reply

    Wow … tears come to my eyes as I read this … can’t imagine having to go through what you are going through … and believe me, our family has been through a hell of a lot over the years, starting with our first child being born 55 years ago with a severe spinal defect which left him paraplegic and eventually wheelchair bound … and bookended by our granddaughter being born 13 years ago with more disabilities than anyone could ever imagine. She still lives at home, and her parents continually try to give her the best experiences they can. We have had those devastating conversations with doctors, clinics and insurance companies. In their wake are hours, months, years of worry and both financial and emotional scars.

    So sorry you are having to go through this, but you continue to find humor wherever it might lurk … that’s the only thing that gets me through the tough spots! Sometimes its inappropriate through the eyes and ears of those who have never had to walk down this long, dark hallway … but it’s necessary, nevertheless! Keep fighting, and continue demanding to be heard. I think I like Dr. David, too!

  11. KaCe Whitacre July 14, 2017 at 10:57 pm - Reply

    Only you can make this life-altering choice but I know you have family & friends who will support your choice. I have you in my thoughts and prayers.

  12. Buttercup July 14, 2017 at 10:56 pm - Reply

    Great news! Of course it’s worth it! Where can we send our contributions, or if you’d prefer….how can we buy a share in your thigh? Let us know where the big fund-raising auction will be. You shouldn’t have to lose your house and retirement savings. Thinking of you and wishing you all the best, Cynthia. Jen

Comments welcome! (thanks)

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