The surgery

Monday, June 15, came EARLY. We had to get up at 3:30 to make the hour drive for check-in at 5:30. Naturally, I hit snooze until 4:15. I packed almost nothing, responding to Patrick’s concerns over this with my certainty that I would be issued a lovely hospital gown and all necessary toiletries would be provided. Besides, I had no one to impress. For a fleeting moment I considered the likelihood that my mother would snap a groggy-eyed photo of me in recovery to post on facebook. As this couldn’t possibly be any worse than the Christmas morning photos in my pajamas with geyser type hair on half my head and my lips so dry they apparently stayed tucked up onto my gums showcasing my chipmunk teeth, I shrugged it off.

I tip-toed into the kids rooms and gave them fierce hugs and kisses that half-woke them from their dreams and said goodbye. In the back of my mind were all the random stories you hear of people going in for a routine surgery and dying on the operating room table because their anesthesiologist was a closet coke addict and forgot to turn on the oxygen. Or similar scenarios. This surgery was not routine or short and was scheduled to last half the day.

On the drive there, Patrick got coffee. For himself. I was not allowed to eat or drink, presumably because if you do die on the operating room table, they want you looking as slender and beautiful as possible. I was silent for most of the drive, but I can never stay introspective for long and soon Patrick had me laughing. Somewhere along that drive it occurred to me that although it would be long and torturous for Patrick and my mother to sit and wait for word of how I fared, I would be asleep that whole time. For me the surgery would be “Oh, I’m feeling groggy,” and then I’d wake up. That lightened my mood quite a bit.

Check-in was fast and as expected I was issued an amazing Vera Wang-esque hospital gown upon admittance. I stubbornly demanded underwear and the nurse gave me a pair of white mesh panties new mothers get after delivery. I secretly loved them. Before Patrick could join me to wait for the surgeon, I went through the necessary scrubbing of the leg, iv inserted, monitors stuck haphazardly across my chest, and – this is the best – a hose blowing warm air was attached to an opening in my gown. My hospital gown filled up with air and they covered me with a blanket pulled directly out of a warming oven. As I crossed my arms and waited for Patrick to be ushered in, I noticed the warm air was filling out my normally frail bosom quite nicely. Patrick noticed too and complimented me on my rack as he entered. Maybe it was the Oxycodon and Valium they had just given me, but it all seemed not so terrifying at that moment. We talked about how much food I intended to eat when I woke up and as each new specialist came in to introduce themselves, I would slide in a comment about preferring to wake up with all my limbs still attached. When my surgeon arrived, I asked her if she’d gotten enough sleep and had all her coffee that morning. She laughed slightly, but I could tell she was already in the zone and focused on getting this shit done right. Her demeanor set me at ease.

In my surgeon’s own words, the actual ankle surgery, or osteotomy, is a fairly minimally invasive, straightforward procedure. With a small number of short incisions in the front and sides of my ankle, she would be able to fit a wire around the existing bone and essentially saw her way through where there used to be a joint, separating my tibia and fibula from the talus bone. These incisions would then be stitched up and the frame would be affixed using wire that would drill through one side of my limb, through the bone, and come out the other side. These wires would be inserted in my foot at the top just below my toes, in my heel, and in my leg at counter angles to prevent lateral movement of my limb along the length of the wires. The ends of the wires would be wound around bolts along the frame and tightened to create a tension-bearing member capable of withstanding the force required to shift my bones without stretching or bending. External fixation has been around a while, but the Taylor Spatial Frame is a relatively recent invention which utilizes fixation and gradual correction to modify bone. While my surgery is fairly basic and unexciting for a surgeon who specializes in limb deformities, some of the miracles these contraptions can achieve are nothing short of life-altering and awe-inspiring.

My last memory was in the operating room performing a flawless butt-scoot from the gurney to the operating room table. I vaguely remember seeing my surgeon’s face, and then I awoke in recovery. I guess it hurt, I don’t remember it that well as the recovery nurse was quick with the good drugs whenever I started to grimace. I looked at my leg right away, but there wasn’t much to see as the frame was wrapped in ace bandages top to bottom, completely shielding the carnage beneath. I asked for a pillow to elevate it and the nurse seemed surprised I could lift my leg without assistance as he tucked a pillow under my ankle. I’ve read many stories from others who’ve had this surgery and they are unable even to bend their knees or move their leg without manually lifting the frame with it, so I immediately felt lucky for my level of mobility.

It took three hours for a room to open up on the med-surg floor. Once it did, my experience went downhill. My surgeon had prescribed Oxycodon, morphine, and Tylenol. Sadly, this was not helpful and I writhed in agony sobbing until my nurse’s shift ended and she gave bedside passdown to the night nurse. I interrupted them to demand that someone call my doctor, at which point the nurse said they really didn’t like nurses to do that. My new night nurse acquiesced and my doctor not only prescribed much heavier pain medication, but also expressed annoyance that she hadn’t been called sooner. I might have taken the time to look smug if I hadn’t been in so much pain. Eventually the pain abated, but I hardly recall the rest as I was heavily stoned for the remainder of my stay. I vaguely recall pushing a button marked pain whenever I would start to feel anything, and in short order soemone would come in and shoot something into my iv, bringing relief in as little as five minutes. I had to pass a physical therapy test on crutches before they would allow me to leave, and Patrick staying right next to me the whole time for fear I would collapse. I was so stoned you guys.

I was released Wednesday, just as a migraine hit me and forced me to vomit up all of my meds. They gave me this Zofran for nausea which sits under your tongue and claims to dissolve like magic. The reality is that it sits under your tongue and makes you more nauseous as it mixes with your saliva and tastes like glue. It might be the worst invention ever.

All I remember about going home was laying across the back seat as Patrick swung by to pick up his five-year old daughter and explain that for just this once she would need to ride in the front. Her eyes got huge and she immediately rallied at the sacrifice. The next few days are sketchy. I laughed a lot. Patrick worried I was too stoned and starting cutting back my medication. At night he set his alarm for every hour and a half so he could get up and give me more medication, and he tracked every pill and dosage and time in a notebook with a diligence I wish I’d put into my kid’s baby books.

On Friday, I got to see my foot. Seven metal wires ran through my foot and leg holding one side of the frame to the other. Additionally, four metal rods about a half-inch (Patrick says a centimeter, whatever) in diameter were drilled into the front of my tibia. In all, I have 18 holes with metal protruding out of them, or 18 pin sites as they are called in the biz. Another way to look at is 18 entry points for germs to travel straight to my bones. Infection right now is my primary enemy and my first concern is keeping those pin sites clean.

You can see in the side view photo the adjustable struts connecting the frame along the bottom of my foot to the frame just above my ankle. There are six of these and starting about ten days out of surgery, I will turn each one to a prescribed number to stretch the soft tissues and Achilles tendon at the back of my ankle, widen my joint space to enable movement, and subsequently rotate my entire foot up to a flat position. In the office during this visit, the surgeon noted that one of my struts had gone slack and the number was 3mm longer than it should have been. She tightened it minimally in the office and directed us to reset it the rest of the way when we got home. That night, Patrick turned the strut, talking to me the whole time so that I didn’t even realize he was doing it. No pain.

This should be a breeze.

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Wait…WHA?! WHYYYY?

The sale went like this:

We’re going to put a huge frame around your foot, run wires all the way through your bones attached to the frame on either side, drill a few metal stakes into your shin bone, and leave you like that for about…oh…say half a year. We’ll put these crazy engineered struts all around it and every day you will turn each strut to a specific number and over time this will force your foot to lift until it is flat, then you just walk around like that for a while until we yank the frame off. You won’t be able to put weight on it or work or drive and it’s going to hurt- I mean HURT- the whole time. Sound good? Here is a snapshot of the device if you’re still considering it…

Obviously, I said no. What a terrible idea! Who in their right minds would do such a thing to themselves on purpose? I thanked the doctor for her time, promised to think it over, which of course I had no intention of doing, and went home feeling defeated.

When I retold the story to Patrick, his response was very different. He couldn’t wait and told me to schedule the surgery as soon as possible. He began listing off all the things I would be able to do once my foot was flat on the ground- hiking, jogging, bowling, skiing, ~~kite-boarding~~ (I was told after mentioning this aspiration to a coworker that this is quite dangerous)… okay, wind-surfing then, wearing flip-flops, walking in real tennis shoes, standing barefoot, taking a step without agonizing pain… He promised to take care fo me the whole time and do every little thing for me if that’s what it took if only he could see me out of pain at last.

Patrick is very persuasive. To understand how I got to this place, I think it is important to understand my starting point. The following images show my right foot in its current disabled position.

If you are thinking this looks painful, you are correct.

I wish I’d vacuumed before these were taken, but I digress.

I’ve been like this for over fourteen years. I do everything on this foot in three inch heels, including hike (although I limit myself to a mile or so as I can’t really stand much longer) and it’s getting really old and making me old. Every joint hurts now, not just the ankle, and I know I’m limping around on borrowed time.

It’s called the Taylor Spatial Frame. It’s an external fixator which functions very much like braces to slowly adjust bones over time. It is often used for leg lengthening or fixation of complex fractures and relies on the medical fun fact that bone can grow at a rate of up to 1mm per day and is the only tissue in the human body which does so without scar tissue. At the end of a correction with external fixator, the new bone or repaired fracture is as strong and healthy as if it had been there all along. For my procedure, the ankle joint is chiseled apart where the bones have grown together to recreate the old joint space at the point of articulation and over a period of a month the struts on the frame will stretch the joint apart and rotate my foot until it is positioned at 90 degrees and sits flat with my heel on the ground. After that, I wait for four months or so while the bone grows back together and condenses.

Of course there are risks. Six months of pain aside, pins which run straight through my bones are at constant risk of infection which can quickly lead to osteomyelitis- a serious bone infection which caused all of my disfiguring disabilities in the first place. There is risk that the joint will not grow back together- this is called a non-union. There is risk the pins through my leg and foot will create fractures in the bone, causing delayed healing. And there is the ever-present risk that inevitably this will fail and I will face my greatest looming fear: amputation.

The prep work leading up to the surgery put me in a manic state similar to a nesting mother. And if you consider it… the scenario is very similar. I will be uncomfortable with limited mobility, unable to wear my current clothing, for over half a year as I wear first the frame, then a cast while the holes from the pins heal. In the end I will give birth to a new and improved foot which, all things working out as planned, will be far superior to my current situation and I will know a pain-free life again. I had to arrange an alternative work schedule with my employer as not working for this length of time as a single mother with no support from another parent was not a viable option. Luckily, I have possibly the best manager on earth. He advised me to focus on my health and work from home as much as possible. Check. I had to modify my vehicle so I would be able to drive since, as aforementioned, I am a mother with children who need to go places and I have a job to get to. We modified my van with a left foot accelerator pedal and after test driving it once already I can tell you it will do quite nicely. Check. I had to prep my bathroom for all the medical supplies I would need, a shower bench, install a shower hose, and find some sot of bench for elevating my foot while peeing. Check, check, check, and check. And the clothes. You can’t fit much over one of these ridiculous looking frames, so I now have an assortment of maxi skirts which serve the dual purpose of both sliding on effortlessly and hiding the lower limb monstrosity. Check.

The only thing left to contend with was my fear, and for that I relied on Patrick. We came up with a mantra that fills me with focus and calm: Flip-flops.

The surgery was scheduled for 7am Monday morning, June 15. On Friday the 12th, I said my farewells to everyone at work, promised to send gnarly photos to those who oddly wanted to see them, promised not to send them to those who begged me not to, and celebrated my last weekend of walking on this foot with a Friday night among friends singing really bad Karaoke. My mother came over to help, bringing my niece, and after I spent Saturday cleaning house waiting for them to arrive, we had a relaxing Sunday showing my niece around Portland, eating too much good food, gorging ourselves on ice cream from Salt & Straw, pedaling a bicycle surrey down the waterfront past the Gay Pride Festival (best way to take an Idaho nine-year-old to that sort of thing, I think- you get a taste of shock without really damaging her irreparably), and then my kids came over in the evening because Georgia was worried I was scared without her. I was scared.

Flip-flops.

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Scars

He said my scars do not define me.

But they do.

My scars today tell the story of a life’s journey from a woman who thought nothing of herself to a woman who learned her real worth. I look forward to the rest of the story my scars will tell.

I have been told my scars do not define me, but this is false. My scars are the definition of how I have become me, every last one of them.

I was 23 when I first became ill. It was the oddest thing; one day I just noticed that my foot had been hurting for a while and the almost imperceptible pain now manifested in a very perceptible limp. I didn’t even know how long it had been hurting when I took myself into the student health clinic, and believed the doctor when he convinced me I had sprained my ankle without any recollection of doing so. I took some satisfaction from the knowledge that I was right, that it really DID hurt as much as I was making out, when I was admitted to the hospital a week and a half later with a soft tissue infection which had become septic.

The weeks that followed were a series of trials and travails seemingly crafted by fate to test the depths of my nearest and dearest fears. My leg was dissected down to the bone across my foot in multiple gashes and up the length of my leg from the ball of my foot to my knee. These gashes were left open to drain the infection and three times a day I lowered my leg into a whirlpool tub of betadine and cringed and screamed while the excised flesh and muscle swirled around in the eddies. Each surgery seemed to bring back larger gashes and more loose flesh as my surgeons fought to locate and remove all of the necrotic tissue. At last my fevers stopped spiking and the pain plateaued; the surgeons tried to sew me back up, but my skin had contracted. In one surgery, they placed rubber bands across a gash with staples on either side to try to stretch the skin closed. I awoke from that surgery screaming and it was hours before the surgeon found the right pain medication to allow me to sleep. Inevitably when the incisions would not close, the surgeons resorted to skin grafts which were taken from my rear end with an implement they must have picked up at Pier One in the gourmet cheese slicer aisle.

I was released from the hospital seven surgeries, two near deaths, and four ridiculous complication setbacks after being admitted, and from there I began physical therapy to learn to walk again. I visited my physical therapist three times a week, and saw my doctor weekly. During these doctor visits, he would look at the angry red skin graft sites which were not healing, shake his head in confusion, and pull out a pair of scissors and silver nitrate to cut back the inner tissue that was growing out of the weeping wounds and burn the edges to cauterize them. This pain was so great I could not physically keep my leg from shaking and the nurse would hold me down while I cried and apologized for not having better muscle control. Two months of this ritual had me walking in short stints with a cane, but in horrendous pain, and I finally saw a different doctor who decided all was not right. This doctor is the reason I swear by female physicians. Instead of writing off my tears as feminine mental weakness, she scheduled an emergency MRI; it was this test that likely saved my limb and my life as it was the MRI that found the infection had returned, had eaten every bit of cartilage in my ankle, as well as half my calcaneus (heel bone), and was working on eating my leg bones and most of the remaining bones in my foot. I was referred to the University of Washington Medical Center in Seattle and left the next day.

The diagnosis was osteomyelitis and the treatment was fairly straightforward – a pic line (which is just a thick tube to carry heavy medications) was inserted into my left forearm to feed the strongest antibiotics my body could handle directly into my central bloodstream. This would remain for two months and I would deliver IV antibiotics at home three times a day until the infection was cleared. The next part of the treatment was to cast my foot so that it could not move and risk spreading the infection to the rest of my body. The rest of the treatment was more complicated.

The prognosis for an ankle which has no cartilage is not very optimistic. There is no “fix” for this situation. A total ankle replacement is an option to replace the damaged joint, but as it only lasts a decade or so, it is not an option in a 23-year-old woman, and it isn’t an option for anyone who has live infection crawling through her bones regardless of age. The next best thing is a fusion – pins or screws hold the ankle in place and the leg bones grow into the ankle bones until there is no more ankle. Due to the infection, it would be many months before I could consider this option as well. I remember staring at the corner of the hospital room walls as the doctor gave me my last option and recommended it as the best option to get me mobile and active again: a below-knee amputation. My mother was standing there and became livid. Her voice grew strained and she snapped at the doctor that it was certainly too soon to be considering something like that. I just kept staring at the wall pretending it wasn’t real.

We left Seattle after a week with a box full of IV antibiotics, a tube affixed to my arm, and no real plan beyond finishing all the medication. Two months later I had the pic-line removed and a week after that, I found out I was pregnant.

This is where the story veers off course. The pregnancy changed everything. I couldn’t do anything about reconstructive surgery while I was pregnant, and I just kind of forgot about my foot for a few months. I wore a walking cast when I walked any great distance, used a cane when it hurt, and wore shoes with heels, even putting lifts in my athletic shoes, as my foot had dropped to a 40 degree angle and without ankle mobility it was stuck like that. I walked like this, on my toes, gingerly at first as the bone on bone grated and swelled in protest, and in time less gingerly as the joint stopped hurting because the bones grew together on their own. My pregnant body spread its healthy glow over every nook and cranny of my being as I gained weight, increased my blood supply, and infused myself with healthy nutrients and vitamins. By the time my son was born, I was in excellent health at an ideal weight- my only issue was a bum ankle.

And the scars. They were obtrusive in the beginning, angry and red. A thick, lumpy line ran up the inside of my calf. The left cheek of my derriere was marred with two bright red rectangles that mimicked the large stamps one sees on an old-timey trunk shipped from overseas. After the birth of my son, I also had stretch marks along the back of my thighs and a jagged c-section scar across my lower abdomen. My collar-bone was speckled with the remnants of where intravenous central lines had been stitched into my skin. My foot was freckled with the keloid-rimmed skin grafts that patched together my ravaged flesh. And the limp, no matter what shoes I wore or how I tried to lead with my hips, I could never quite erase the limp.

In the beginning, these scars defined me and made me feel less than those around me. They dictated what I wore in public, and how I acted. I could never pretend to be seductive or attractive again, because I knew these scars were buried beneath whatever façade I hid behind. They demoted me from the leading lady in the realtime drama that was my life to the quirky sidekick who was only around for comedic relief. Other women were beautiful. I could now only have character.

My scars made me grateful rather than in love when my boyfriend and father of my child selflessly agreed to marry me. They made me tolerant of a life bereft of love, empathy, real kindness or consideration. They made me give up on my dreams of happiness and learn to settle, to put up with a man who took his anger and stress out on me, to shrug my shoulders and remind myself that I didn’t deserve more when my husband forgot my birthday, our anniversary, and Christmas. My scars made me feel lucky when my husband told me I could go back to school, as long as it didn’t cost him a dime and I found a way to pay for childcare on my own. My scars made me embarrassed to wear a swimsuit in public, or shorts, or anything that didn’t cover my calves up to my knees so as not to offend others with my less-than-beautiful skin.

I had three children. I went back to school and graduated with a degree in engineering right after the last one was born. My mother celebrated my graduation with a barbecue and I received a few gifts, but none from my husband. I was so lucky he stayed married to me with my misshapen leg and hideous scars. I began working and found that my scars did not matter as I began to excel professionally as an engineer. I wore modified tennis shoes when I walked the construction site for twelve-hour days as a field engineer in the summer. I wore pant suits with heels as I networked with state funding representatives for my company. I stopped thinking about my scars and I started feeling that perhaps I wasn’t so lucky to have a husband who tolerated me any longer.

I left my husband, moved to Portland, went through the struggles of moving my children with me, through job loss and near starvation, and clawed my way to a position in a corporation with a real future and the ability to support my family single-handedly while paying child support to that tolerant husband who refused to find a job paying taxes. I filed bankruptcy, I paid off debt, I started saving for retirement and put my life back on track.

I met someone wonderful. Someone who saw my scars and my limp and dared to call me sexy and beautiful and everything he ever dreamed of. My foot was getting worse, though. The toes were curling up as the tendons under my foot contracted over time and surgeries to cut the tendons were only a temporary fix. I was referred to a surgeon who specializes in limb deformities and she gave me a solution.

A few weeks before the surgery, I sat with Patrick, the love of my life, and discussed my scars. I talked about getting a tattoo to cover the line going up my leg and he scoffed at the idea. He said my scars only leave him in awe of what I have been through and what I have accomplished in spite of them.

He said my scars do not define me.

But they do.

My scars today tell the story of a life’s journey from a woman who thought nothing of herself to a woman who learned her real worth. My struggles and my triumphs are etched on my body. They speak of pain I have endured, and they speak of survival. They murmur memories of torturous pain and the persistence to keep living exactly as though nothing was wrong. They remind me of the early days when I could not walk, of my mother’s cracked voice when the surgeon said amputation, and they remind me of each newborn child laid upon my shoulder to kiss their cheek after they’d been pulled from my belly.

I will have new scars soon, and these scars will define me further. They will tell the story of my rebirth as my foot is straightened over a period of six months in an external frame affixed to my bones. I welcome these scars and the new world they will usher in as I am able to walk without pain again. I look forward to the rest of the story my scars will tell.

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