I gained valuable insights that I am eager to share with anyone considering a Taylor Spatial Frame or similar external fixator as an elective surgery. In no particular order, here are a few things I learned along the way…
The countdown is on- today marks nine days left until they remove this thing from my foot. I’m excited, but another part of me is scared and I know that I will miss this in some odd, difficult to explain way. I have only a little over a week left to put the enormity of my lessons and experiences down in writing before it is over. Over the last four and a half months, I gained valuable insights that I am eager to share with anyone considering a Taylor Spatial Frame or similar external fixator as an elective surgery. In no particular order, here are a few things I learned along the way… Continue reading “Things I Wish They’d Told Me”
It’s been over a month since my last post. I haven’t been able to write, either mentally or physically. Too much has occurred in the last month for a single post, so I will likely have to break this into pieces, but I think my head has cleared enough to finally put it all down.
∗ ∗ ∗
Nearly five weeks ago, I visited my surgeon following the last day of strut turns, excited to be done and eager for her praise at my Wolverine-like healing powers and unflagging resilience. She looked at my foot, still a little crooked and not quite flat, and broke the tragic news that I would need a new prescription to continue to move the heel down. I was devastated when she handed me the print-out at the end of my visit- 12 more days. Still, I was managing the pain well, even putting tentative weight on my foot, and told myself a few more days would just make sure it was perfect.
That was a Thursday, and within two days the sky fell.
In order to flatten my foot, the ankle movement required the top of my foot to lift and the rear of my foot to lower; the slow and steady incremental movements each day were designed to gradually move the bone into position while simultaneously stretching out the tendons and soft tissues which have not moved for a decade and a half. By Friday, my achilles tendon was tired of this and had washed its hands of me. My heel swelled to three times its size, trapping the nerve that runs near it, and spurring suddenly overwhelming pain that burned and stabbed in ever-increasing waves. By Sunday, I hadn’t slept in days and had turned to writhing around screaming as my primary coping mechanism. I learned what happens when pain reaches a level beyond what any human can bear- you don’t die or even faint, you just keep feeling more pain, more than you think your body is able to feel, until… well, there is no until… you can just always feel more.
Patrick drove me to the emergency room once he’d managed to coax me into rolling out of the fetal position to make it down the stairs. It was a twenty minute drive, a thirty minute wait once we arrived, and another twenty minutes to see the doctor once we’d been given a room, so whatever good the pain meds were doing had completely disappeared by the time I saw anyone. Luckily it doesn’t even occur to anyone you might be faking it when you roll in with a giant pin cushion for a foot. (I’m always surprised at how much shock seasoned medical professionals display when they see this thing.) It took five minutes for the iv dilaudid they gave me to dull the intensity of the pain to a bearable ache. Fearing the pain had suddenly intensified due to infection (my arch nemesis), the doctor ordered a full blood workup and a fancy x-ray from a mobile machine that wheeled right into my room. We reached my surgeon as well after some frantic texting and she gave me the day off of more strut changes, so we went home generally satisfied that the pain would abate and we’d done our due diligence to ensure it was nothing more serious.
Monday I was back to turning struts, and Monday night I was back to not sleeping as I held my leg in the air unwilling to rest it even on a pillow for the pain it caused. I called the surgeon Tuesday morning, utterly exhausted and unable to cope with more pain, and she urged me to come in to the office
A cartoonist’s rendition of an Achilles tendon lengthening stolen from another site that will likely sue me for this.
where they would fit me in around their schedule somehow. Once there, she reviewed the blood work results and assured there was no real sign of infection, and that the pain was simply the achilles refusing to stretch any further. We decided the only option was to lengthen to tendon or I’d never be able to lower the heel further.
To lengthen the Achilles tendon, three incisions are made up the back of the heel. The tendon is partially severed on one side, then the opposing side a few centimeters up, and then the first side again a few centimeters further up. The surgeon then pulls down on the heel to stretch the tendon out and the remaining tendon between the severed sections gives way and twist sideways to add enough length to allow movement again. As we did not need my ankle to move in the future, Dr. Workman considered severing the tendon completely, but she decided against this simply because my ankle would appear deformed afterward, which would obviously ruin my promising future as a middle-aged cellulite model.
I already had an early morning appointment scheduled for the coming Thursday, less than two days away, so she directed me to meet her at the surgery center instead and plan to stay the night. I begged her in tears not to make me turn the struts again until after the surgery and though she hesitated for fear my bones would condense before we’d finished the repositioning, she finally relented with pity clearly written on her face. Though still in tremendous pain, I went home relieved that we had a plan to make this stop.
Tuesday night was another night of agony and no sleep, and around 9am Patrick made the executive decision to take me back to the emergency room, presumably because he was tired of listening to me wail. This meant canceling work for the both of us that day- a big deal as Patrick doesn’t get sick time- but I don’t recall feeling guilt for more than a few moments as I couldn’t focus on anything but the fire surrounding my foot. Relief came in the same fashion as before- iv dilaudid. As we prepared to head back home, they gave me one more dose for the road in the hopes I’d make it back to my oral pain medications in time before the iv wore off. My surgeon texted as we were leaving the hospital and directed me to head straight to her hospital to be admitted; her plan was to start me on iv meds to get out me out of pain until the surgery the following morning, but I convinced her to let me go home and see how I fared.
I slept very little that night, which was fine as we had to be up and on the road to the hospital by 4:30 for check-in by 5:30. I had taken my last dose
Three tiny incisions along the Achilles closed with dissolving sutures.
of pain medication at around 3am and didn’t bother to bring any more with me as I reasoned I’d be out cold by 7 anyway. The pre-surgical prep went quickly, but I was in severe pain by the time a trio of anesthesiologists came in to announce that they would be performing a nerve block. I couldn’t hold my leg still as it shook on its own, so they held me down as one doctor ran the ultrasound over my thigh and another injected the medication directly into a pair of nerves along my inner and outer thigh. The second injection stung sharply and a nurse caught my hand mid-air as I inadvertently swatted at the needle as though I was a toddler getting my first shot.
Instantly the pain was gone. I invited the anesthesiologist who wielded the needle to move in with us. I described in enticing detail the lovely pine wood bunkbed he could share with Georgia and promised to buy him whatever toys he wanted. The rest is fuzzy as the iv meds took over. I vaguely recall greeting Dr. Workman in the operating room and asking everyone if they felt well-rested and ready to rock. The anesthesiologist came in and I professed my undying love for him. I only know this because Dr. Workman told me all about it many hours later.
After some confusion in recovery about whether or not I was to stay the night, I was wheeled into a double room with an elderly roommate who assured me she was just about to leave and then stayed most of the day. My leg was numb, I was well-drugged, and the nurse handed me a menu with directions to order whatever I wanted as much as I wanted. I felt the kind of happiness I imagine those last floating survivors of the sunken Titanic felt when that little boat of rescuers finally paddled up. I was awash in joy and I ordered a five course meal with four desserts. I was gorging myself on chocolate pudding when Dr. Workman came in with her assistant, commenting under her breath that she’d forgotten to put me on a calorie-restricted diet. Her assistant held a sheet of paper with a new
My flat foot recovering in the hospital.
prescription on it, a prescription to turn the six struts multiple times over two weeks. Rather than hand the prescription over to me, however, Dr. Workman had him read each strut turn aloud and she systematically turned each one in ordered increments, going around and around my ankle, until the entire two weeks of repositioning was completed in fifteen minutes. I ate my pudding the whole time, thankful for my numb limb. When she had finished, my foot was flat. It was done. All I had left to do was heal.
I spent two nights in the hospital instead of one because the nerve block that wears off in 8 to 24 hours just didn’t. I never got all the feeling back, but I did start feeling pain again the morning after my surgery. Thankfully this was simply the initial swelling and surgical pain that follows any procedure; by the next morning I was off of the iv medication and back to oral meds at reasonable doses. I could wiggle one toe and had some feeling in the top of my foot, though the rest of my foot was numb. Good enough. They sent me home.
I won’t lie- it’s getting harder now. In the beginning, only two or three of the struts would change in a day, but now that the ankle is fully separated, the upward rotation has begun and the strut changes are more difficult. Here comes the pain.
This damn foot.
My “prescription” is a 29 day plan with daily modifications to each of the six struts on my Taylor Spatial Frame, trackable with an iPhone app that sends me reminders throughout the day and allows my surgeon to monitor my progress. Yesterday was day 15 of 29, which means I’m over halfway to a flat foot.
I won’t lie- it’s getting harder now. In the beginning, only two or three of the struts would change in a day, and in only 1 mm increments. Now that the ankle is fully separated, the upward rotation has begun and the strut changes are more difficult. Each of the struts move every day now, and most in 2 or 3 mm increments. The dials are more difficult to turn and the pain is reminiscent of a vice slowly crushing my bones.
This pain kicked in to high gear at my last appointment, just three days ago. Two of the struts on the backside of the frame, the side which is expanding, were too small to expand further and had to be changed out. As the entire frame is a complex engineered matrix of tension and compression members, one cannot be removed without imminent collapse of the remaining struts unless first placing some sort of support to hold the frame in place. In the past, the doctor would thread long bolts through the metal rings around my foot and leg to hold them stable, but my doctor brought out a new device invented by one of her colleagues during her fellowship. She called it “the Claw”. Small clamps bit down on the frame rings and she tightened the device to stabilize the frame. She started with strut number 5, and I leaned on my side and chatted with her as she worked, reading from a list of questions I’d been compiling for her. We addressed odd items such as whether or not such a thing as a bleach bath was advisable or if this was some crazy alternative treatment akin to putting a knife under one’s bed to cut the pain. (Knives under beds don’t work, just FYI. I highly recommend narcotics instead.) She was fine with a short bleach bath to disinfect the pins and we moved on to the efficacy of muscle massagers as she finished up strut 5 and began to work on strut 4.
I was facing the wall when I felt the frame begin to collapse, and with it my ankle. Patrick claims it was nearly imperceptible, but as strut 4 was pulled from the rings, I felt a crushing pain that stole my breath and forced a wash of tears through my tightly closed lids. I stared at the wall in silence. The doctor was becoming frustrated as the new strut was refusing to fit into place no matter how much movement in the frame she elicited. She left the room to find a different strut and I rolled to my stomach, buried my face in the pillow, and sobbed. Patrick hurriedly offered me more pain meds from the ready stash he had prepared before we left the house, but I couldn’t bring myself to move enough to reach out and take them. “I can’t
The angle between foot and foreleg is gradually beginning to decrease with greater strut movement.
move,” I gritted through clenched teeth, and the doctor rushed back in with the new strut. I was kicking myself for not having the presence of mind to take more pain medication before coming in, but I really wanted to have a sober conversation with her this time.
She struggled through another long period of tugging and yanking on a frame that took turns stretching and crushing my freshly healing ankle bone. “I hope I don’t offend you if I drop an F-bomb,” she finally said, and our laughter helped to ease both the tension in the room and the pain in my leg just enough to allow her to get the strut in place. A few minutes more and the horrible claw device was gone. I could sit up, but the throbbing and visible swelling in the tortured limb was just beginning.
Just prior to this exercise, I had discussed my desire to reduce my pain meds to something weaker and hopefully less addictive. I take Tramadol during the day which is an effective pain medication that doesn’t interfere with cognitive abilities and has a very low risk for addiction, but at night I need something stronger for sleep. She agreed to prescribe hydrocodone to replace the heavy dilaudid I had been taking, but as Patrick wheeled me toward the pharmacy after our appointment, I began to doubt my wisdom in the timing of this change. I was reducing my ability to battle pain at the same time I was increasing a number of activities which would increase it: larger daily strut movements, at least two more strut changes like this one to come in the next two weeks, and the next day- Wednesday- I would physically return to work which meant an hour or so of driving in traffic each way and a few hours on crutches.
Patrick assured me it would be fine and we would just call the office if it wasn’t. Patrick is very different from me in the way he handles problems. I worry about every potential situation before it can happen so that I have the answer to each problem already solved and at the ready. He does not worry and instead points out the futility in such an endeavor to actually change what’s going to happen, promising to cross each bridge when he gets there. There are merits to both methods, but I am noticing that Patrick has far fewer wrinkles and gray hair than I do.
Swelling in foot increasing the likelihood I will be mistaken for Miss Piggy on the street.
I took a hydrocodone on the drive home from the doctor’s office. An hour later I demanded something else as my head was fuzzy, but the pain was just as sharp and bone-jarring as if I’d taken nothing. That night was the hardest one since I’d left the hospital and Patrick jumped up multiple times to fetch me more pain meds when the schedule would allow. My Achilles tendon was on fire, my foot looked like a muppet appendage, and every muscle in my foot and leg took turns spasming and jerking on the offended ankle.
By morning, the pain and swelling had calmed down enough that I felt confident I would be able to drive to work for my first day back without passing out from the pain. I am obviously not allowed to drive while taking pain medication (laws and what-not), so I spent the morning working from home and elevating my foot until the very last possible moment. To be to work by noon, I have to leave the house at 10:30, which meant I had to call in to two of my meetings on the road to attend over the phone while driving with a swollen leg using my left foot. Patrick was terrified I was going to kill myself or someone else, so I just told him not to worry and we’d cross that bridge when we got there. He tucked me into the driver’s seat and gave me a very serious lecture in his most serious voice and then kissed me like we’d never see each other again.
The left foot accelerator pedal we had installed took some getting used to. I did mistake it for the brake more than once on the drive, but I drove slowly, put both hands on the wheel like a student driver, and forced myself not to let my mind wander. I survived. I pissed off a motorcyclist as I very slowly weaved my way up Germantown Road, clenching my teeth around every sharp turn, but aside from an angry shaken fist as he finally passed me at the top of the hill, I arrived at work unscathed and having caused no bodily harm or property damage along my trek.
It was a relief to be back at work and into the swing of things again. I was coaxed into showing my foot to the attendees in my first meeting of the day, but after that everyone else just commented on my lovely foot covering and said it was nice to see my face again. Hard to believe since my face hasn’t seen the sun in weeks, but nice to hear anyway. Shortly after my second meeting of the day, I was gifted with a key to my very own golf cart, mine for as long as I am on crutches and unable to board the shuttle that runs between campus buildings. I took my work buddy, Jarrod, for a spin around campus as he showed me the ropes of how to get around behind the buildings, where to park, and for God’s sake to follow actual traffic laws and not roll through the stop signs Marie!
By the end of the day, I was exhausted from all the crutching and my leg was begging me to lay down. I informed my leg we still had an hour and a half commute home and it began to shout in the form of angry muscle spasms that jerked on the frame and squeezed my ankle. This poor ankle. It’s been through so much. When this is all over, I’m going to treat it to a few days lounging in the sun on a beach. No walking, no frame, nobody trying to make it change when it doesn’t want to. Just some margaritas and the sound of mother’s screaming at their children in the distance. Heaven.
I called my doctor the next day. I informed the office I would be at work until 5 and would then swing by to pick up a prescription for something better than what I had just received if they would be so kind as to write a different prescription. The nurse was sympathetic and assured me she would see what she could do. At 4:59, they called me back to say they had made it happen and my new prescription would be waiting for me at the nearest pharmacy. After another day of driving and crutching after another night of agony and limited sleep, it took all my mental coaching abilities to convince myself to extend my commute with a detour to the pharmacy. I knew, however, that if I didn’t do it now, I would run out of what remained of the dilaudid in a day and I would spend the weekend in abject misery.
I parked as close to the pharmacy as I could, but once I made it up the pharmacist’s window, I was informed they were out of the medication. Not to worry though! All I had to do was take this hard copy signed prescription down the block to the neighboring building where there was a smaller pharmacy that had it in stock. I crutched a block in the heat, clinging to the prescription with two fingers and begging my arms to go faster. I waited nearly an hour for this next pharmacy to fill the prescription, and then crutched back holding the bag of medication with my curled fingertips. I stopped twice to catch my breath and willed the car to roll closer to no avail. By now every muscle in my lower leg and thigh were cramping up, but I made it to the car, threw my crutches in the backseat while I balanced on one leg, and collapsed on the driver’s seat.
I texted Patrick to let me him know I was on my way so he could start worrying and I relayed my little sob story to him. He responded with adequate sympathy and I felt foolish. “No, I”m okay, nobody tried to shoot at me or eat me. I’ve got to stop complaining so much.”
His instant reply? “Nah, it’s you.”
Find somebody who gets you; it’s so much better than trying to change.
Love makes hard things easy, makes weak people strong, and makes the most difficult parts of our lives the happiest.
I couldn’t have done this without Patrick.
He scoffs at this when I tell him, but I remind him that I simply WOULDN’T have done this without him. I had no intention of even trying to change this foot before I met him, and it was only upon his eager insistence, his unwavering optimism, and his highly convincing confidence that I was persuaded it was possible.
Early on in my married life, I came to realize the myth that all a woman has to do is sit around waiting for a prince to show up and take care of her was just that- a myth. With two children in diapers, I made the decision to take my family’s financial future into my own hands and started my degree program in Engineering. I was allowed to do this on the strict caveat that it was not allowed to cost my husband a dime. I took out loans, both subsidized and unsubsidized, finagled the department to give me a few scholarships, and gratefully relied on my little sister’s generosity as she babysat for me. My husband at the time was not the sort to get up at night with a baby, so I was still a full time mother and housewife the entire time. By the time I graduated and got a job, I was accustomed to doing everything without help- planning for my family’s future, taking care of the kids, buying and selling homes and stock investments and running the household- everything. After I left my husband, my load didn’t really get heavier, but my confidence fell and I had to learn how to do everything alone without even a cheerleader to believe in me. And so I did.
But over the past year, Patrick has taught me to let go of the reins a bit and learn to accept a little help. I still struggle with it, but there isn’t much I can do about it these days with a cage on my foot. In the hospital, he slept sideways in a recliner, his head lolling over one arm of the chair and a leg haphazardly drooped over the other. He woke instantly at the slightest sound to ask how I was doing and ran out to chase down a nurse every once in a while. He stayed right at my elbow as the physical therapist forced me to walk up and down stairs and back and forth along the hallway on my crutches before signing off on my release.
When we arrived home from the hospital, he was too worried I would fall and instead carried me up two flights of stairs like a baby in his arms. He has managed all of the instructions from the doctors as I’ve been too drugged at most of our appointments to comprehend their conversations, and he has completely commandeered control of my medications. (The two times I have taken this into my own hands so far I took the wrong dose and
didn’t write down the time.) He cooks for me, makes me coffee every morning, does all the housekeeping and laundry, and watches all five of the children.
Our evening ritual.
Of all of these chores, however, by far the kindest and most difficult is my pin care. Pin care is vital to prevent infection and will occur every day until my frame is removed. If performed improperly, the skin around the pins may heal wrong and cause tenting, a situation where the skin grows up around the wire in a cone and leads to skin tearing and irritation with any movement. If all of the drainage and scabbing is not removed each day, infection can brew and in no time this can lead to a deeper infection which may tract to the bone. Nearly every complication with a Taylor Spatial Frame results from problems with the pin sites and most of these can be prevented with adequate pin care.
Clean and healthy pin site.
Each evening after the kids have been put to bed, I take a shower and soak my leg with the frame in water. I am only allowed to use Dial antibacterial soap and I lather up my knee as I sit on my shower bench and rinse the soap down my leg over the pins. When I’m done, I towel-dry the frame and use a fan or blow dryer to dry the rest of the droplets. I lay down in bed with my leg elevated on a one foot-high foam wedge pillow and Patrick takes over. Using a sterile cotton-tipped applicator and sterile saline, he must diligently scrub each pin and gently push the skin back from the wire all the way around. Each pin requires a fresh applicator which must be opened from sterile packaging. After the first few cleanings, the pin sites were inflamed and irritated; even gentle pressure hurt immensely and with each of my gasps he would stop
and catch his own breath, visibly upset at the pain he was causing me. He must watch for infection and monitor each bruise and blister closely to report it the doctor, and sometimes this involves tracing a line around a reddened area to see if it spreads or snapping a photo to email to my doctor. Once each pin has been cleaned, he places dry gauze carefully around
An irritated pin site- excruciatingly painful with each movement.
each of the pins which are still draining and tightens the plastic clip on the wire to put pressure on the dressing. When this is finished, he turns the struts. There are six of them and the changes have gotten larger as the ankle has now been separated and we are beginning the movements to raise my toes and lower my heel. He turns the dials slowly on each strut for fear of hurting me, but I groan and gasp anyway.
The entire process takes about an hour and we have a pretty good system now. He puts Bob’s Burgers on to distract me and we laugh and make fun of each other the whole time. If you don’t know Patrick, you don’t know that he is not good with these things. He cannot stand gore and his idea of what constitutes gore is pretty pathetic on my scale. While I knew I could count on him to get the door for me and help out with cooking, I honestly thought I’d be on my own with most of the raw and dirty medical procedures.
Turning the struts- that one in the back needs a little help sometimes.
But love is odd.
Love makes hard things easy, makes weak people strong, and makes the most difficult parts of our lives the happiest. It makes a man who hates the site of blood buck up and take over without comment or complaint because he doesn’t want me to struggle on my own. It makes a woman who likes to complain bite her tongue when it hurts because I don’t want him to worry that he’s hurting me.
I can’t walk, I have a monstrosity on my foot that rivals some of the best horror movie props, and I have never been happier in my life. Thanks to love.
