Saving Elmo: Sometimes the bear eats you

>>>Saving Elmo: Sometimes the bear eats you

As far as saving Elmo (my knee replacement) is concerned: We didn’t. Barring miracles, he becomes a biohazard on July 28.

“This should have worked; I’m out of options,” sighs The Doc, looking sad, “I’m so sorry, but I want you to see Dr. Jack, our traumatology expert. Maybe he’ll have some ideas.”

I head to the other side of town for Dr. Jack’s “fracture clinic,” and am wheeled past curtained exam areas full of busted arms, toes, clavicles. “Dr. Jack wants me to put you in a private room,” the nurse confides, pushing me into a bright, sunny space with lots of windows and a locking door.

“Should I get up on the exam table?”

“No, I don’t think that will be necessary,” she says brightly, and leaves.

Uh-oh. 

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.

Dr. Jack-the-Idea-Guy comes in, shakes hands, and sits down, trying to be delicate. “I know this isn’t what you want to hear,” he begins hesitantly, “But I don’t think there’s anything we can do for you. The bone isn’t healing, and we can’t get good fixation. It’s starting to destabilize; the plate is bending away from the bone.”

Ulp.

“If it was a stable fracture,” he continues, “I could say, ‘let’s get some bloodwork, let’s see what’s preventing growth, let’s explore some other options, let’s reset that plate and try again.’ But it’s not. I’m afraid that any additional surgery will just weaken the bone and make the failure worse.”

Yep. That is definitely NOT what I wanted to hear. 

“You need surgical revision, a distal femoral implant. It’s the only option that makes sense, and it will get you back to walking for the first time in months. You’ve already been in a wheelchair for nine months; that’s really hard on your body. We need to get you up on your feet.”

“But when the implant wears out, the remaining options are…amputation and what else?”

“Amputation. We can try to do a second implant, but they’re usually not very successful. But,” he says encouragingly, “It’s possible that by the time you need amputation you’ll be older, maybe as old as 80, so it won’t be as critical. I’m sending you back to The Doc, and he can give you more detail; I don’t do those revisions, he does.”

We spar for awhile; it seems incredible that there is simply no way to grow this bone when I’m reading about so many alternative treatments in the NIH archives. But Dr. Jack is adamant: None of them will work for me.

“In the meantime, is there anything I can get you?” he asks, “A new brace, maybe?”

So much for Idea Guy.

June becomes a month of firsts. First time back home. First time with the cats piling up to sleep on me at night. First trip to a restaurant on my own, first time crossing a downtown street, looking for curb cuts that aren’t so steep they tip the wheelchair backwards. First time taking twice-daily showers and clambering up stairs with a busted leg. First time making glass in nearly a year (thanks, Bob). First time attending a conference–BeCON–with wheels on my backside. First time negotiating a farmer’s market in a wheelchair.

First time I speak of amputation as “when” instead of “if.”

“What, really, is the lifespan of a distal femoral implant revision thingee?” I ask The Doc.

“No one knows, really, it’s relatively rare and there don’t appear to be a lot of common factors in the failures,” he answers, “75 percent of patients make it to five years, 63 percent to ten. About 50 percent get to 15 years, 36 percent to 20, and 28 percent are still going strong at 25 years.”

Somewhere, in the back of my mind, God of Adventure is reminding me that we had a 70 percent chance of saving Elmo. Shut up, I tell him fiercely.

“…And if you have the surgery at the end of July,” he continues, “You’ll probably be walking–maybe just with a walker–by mid-October. Remember, we gave you three months before and you were walking independently in six weeks. This recovery will be harder–you’ve lost a lot of muscle mass–but you’ve got a really great attitude and a lot of determination; I think you can do it and be happy with the results for a reasonable time.”

My really great attitude at the moment is mostly, “well, this sucks,” which I doubt is what he had in mind.

Timidly, I broach the unthinkable. “I know the lower down the amputation, the more success with prosthetic limbs. Would it make sense to do one now, I mean, uhm, chop off The Leg lower down instead of the implant, to prevent the implant from chewing up even more bone? That way there’d be more leg left, I’m still young and can build up strength with a prosthetic…”

I don’t look down as I’m saying this; I’d probably be the first human to see five little piggies on my left foot, glaring hellfire at me. I wish I’d gotten them a pedicure. 

But The Doc doesn’t think so. “If we were talking below-the-knee amputation, that might make sense. In your case it wouldn’t buy you much–there still wouldn’t be enough leg muscle to really drive a prosthetic successfully. Artificial limbs require a lot more energy than you’d think. Besides, you still have a lot of active walking time even with the implant, so let’s not go there yet.”

Yet. I know I’ll be walking after the implant, but…how long?

“That’s the million-dollar question,” he sighs, “And I just can’t give you a good answer.”

Insurance doesn’t cover a second opinion, or a third, but The Doc promises to support that quest in any way he can. It’ll be out of (my) pocket–dontcha just love US healthcare?–but already my records and images are in the hands of two specialty orthopedics clinics, and on the way to a couple more. I tried NIH, hoping they’d have some kind of miracle thing, but mostly discovered that they don’t return calls.

I have until July 28 to find a better solution. I could postpone the surgery, of course, but the plate holding The Leg together is obviously bending; I’m starting to go bow-legged on one side. If it snaps, the situation could change fast…for the worst.

“We’ll keep you on the OR schedule for July 28; if you find a better solution, you can cancel,” he says, “In the meantime, stay off The Leg as much as you possibly can. We need to keep that plate intact.”

I gulp, thinking of all those stairs in my house. I only just got home; maybe it’s time to invest in one of those rich-old-lady-stair-chairs.


 

2017-11-29T11:42:20+00:00

17 Comments

  1. Mary Kay Nitchie June 29, 2017 at 4:35 pm - Reply

    So sorry that you are at this crummy fork in the road. You certainly gave this your best shot, and you deserve to get back on your feet and back to your creative life. Thanks for sharing the news with us.

  2. Buttercup June 28, 2017 at 11:08 pm - Reply

    Cynthia, that’s such bad news. I hope you get a second (or third) opinion. You continue to amaze me and if there’s an opportunity for those of us who are far away to help I hope some one will put the word out on the WGB if you aren’t able, or don’t want to post about it. I don’t do FB so WGB would be where I’d find out. Please let us help if you need it.

    I, too, was wondering if you’d been on a vitamins & minerals regime?

    As Cheryl said, maybe technology will come to the rescue………. thinking of you and wishing you all the best. Jen

  3. Island Fused Glass June 28, 2017 at 8:44 am - Reply

    I am sorry saddened by this news. And just keep deleting my comment. You are so strong, but this news really sucks.

  4. Nancy Goodenough June 27, 2017 at 9:55 pm - Reply

    Fuck

  5. ellen abbott June 27, 2017 at 4:01 pm - Reply

    well, I wish I knew what to say. fuck, fuck, fuck doesn’t seem to quite cover it. soldier on, cause what the hell else is there to do?

  6. Jeri Warhaftig, June 27, 2017 at 12:55 pm - Reply

    I’m so sorry it has come to this, and I wish I could say something helpful. I know you will weather this storm and I pray that if and when a distal femoral implant gives out, bio-technology will be ready with an an as yet un- invented bag of tricks to keep you on your feet.

  7. Connie Gates June 27, 2017 at 10:37 am - Reply

    So sorry this is happening to you. Always sending you my best wishes and positive thoughts. You are an amazingly strong woman.

  8. Colleen Bell June 27, 2017 at 8:04 am - Reply

    I, too, have been following your “escapades” with Elmo. I have heard the most wonderful experiences coming out of the Cleveland Clinic. If you haven’t already checked them out, take a look at their web site. I wish you the best as you deal with this and pray it is resolved.

  9. Faye Liston June 26, 2017 at 7:29 pm - Reply

    Take your time making decisions and try to be positive, analytical and unemotional until you decide your next plan of action. Cancel the pity party. You have too many options to consider. Obviously, I would be seeking a second opinion even if I had to pay for it out of pocket. You are, after all, your best advocate. Your fortitude and mental strength is amazing. Don’t let these doctors break your spirit. You are tough. You will find a way….it’s just not apparent right now. Your blog is addictive. Please continue to be strong.

  10. Diana tillotson June 26, 2017 at 4:36 pm - Reply

    I have followed from the beginning of Elmo and am so sorry you received this unwanted news. I agree that things are changing so rapidly that if you go for the transplant and it works maybe by the time it wears out you will have other options. I’m assuming that your insurance will pay for this option. I think a go fund me page is an excellent idea . Keeping you in my prayers . I admire your humor and determination.

  11. kathryncecelia June 26, 2017 at 3:36 pm - Reply

    I am saddened to hear your news, but optimistic as you are a “can do” person. I have you in my prayers and hope for a solution. What do you say to a 30% tequila solution one of these first days?

  12. Stephen Richard June 26, 2017 at 10:54 am - Reply

    I was really pleased to meet you at BECON. I got to meet one of my casting and blogging heroes!
    I didn’t really understand what you were telling us about the prognosis of your knee. Thanks for this reality (for me) check. I send you my wishes for a good outcome.

  13. Risa June 26, 2017 at 10:12 am - Reply

    We’ve not met IRL but I’ve been following for a long time. My heart is hurting for your less than wanted news and if there’s anything I can do ( like a go fund me site for multiple opinions?), holla. Your worldwide glassy friends will support.

  14. Hanne Roschke June 26, 2017 at 8:10 am - Reply

    Hi, I really admire your gumption!
    Now Since you have never mentioned vitamines and such I want to tell you a little story. If you have that covered just tell me to shut up! ?
    Two years ago I broke my shoulder – at the age of sixtysix they told me it would take time – but the first time they x-rayed the shoulder about 3 weeks after the deed – the doctor was really surprised at how fast the bones were healing! And the difference is deffinitly because I have taken vitamine D3 for many years – about 7000-10000 iu pr day and still do. Okay, got that off my chest ? and now you can hit me over the head if you have heard this a gazillion times!?
    I so hope the best for you! Let the ‘miracles’ begin!
    The best
    Hanne (over here in Denmark, Europe)

  15. Susan June 26, 2017 at 7:44 am - Reply

    Cynthia, your courage astounds me. Have you read “Crossfire” by Dick Francis?

  16. Lori Schinelli June 26, 2017 at 7:21 am - Reply

    Ah, Cynthia…… I wish there was something I could think of to say to make it better. Just know there are quite a few of us out here that care and are sending our positive energies your way

  17. Cheryl Sattler June 26, 2017 at 7:03 am - Reply

    Ok. Not to be all Pollyanna bc if this were me I would be freaking the hell out – but just wanted to mention at the pace of technology there may well be totally different options in a couple of years. All the military research- I hate that this is happening to you.

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