Things I Wish They’d Told Me

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”

An End In Sight

I’m so close I can already feel the flip-flops between my toes.

My little cheerleaders watching over the procedure.
My little cheerleaders watching over the procedure.

It’s been ages since I’ve written, and for good reason!  In the past month, my medical drama has steadily become easier and now this foot has taken a back seat the rest of the struggles and triumphs and heartbreaks and heart explosions that are my life.

I emerged from the dark cloud of anxiety and physical misery caused by chemical withdrawal from the high dosage pain medication so gradually that it is difficult to pinpoint exactly the day I just felt like myself again.  I remember an afternoon when I looked up at the sky and felt like smiling from all the happiness and love in my heart, and I realized I was okay.  I returned to being a busy working mother and allowed my foot to stop taking center stage.  Four of the five children in our blended household started the fall soccer season and their schedule on top of my demanding work schedule left me very little time to

Replacing the struts with stationary bolts for the long haul.
Replacing the struts with stationary bolts for the long haul.

worry about which wire was hurting the most.  I began to feel almost normal again.

The next phase of my healing journey had now begun.  My foot was flat with no further adjustments needed and in the follow-up appointment to my last surgery, the doctor placed two threaded bolts on either side of the frame to keep it from accidentally moving if the strut dials were bumped.  In the next appointment a week later, she placed two more threaded bolts toward the front of the frame and removed the adjustable struts one by one.  The girls accompanied me to this appointment and were exceedingly helpful attendants as they attempted to pocket some of the spare parts, spent an inordinate amount of time captivated by the water cooler and spilling water on the exam room floor, and had everyone on either side of the privacy curtains laughing hysterically at their giggling antics.

Bone heals fastest when it is under pressure as this stimulates the use of calcium; this is why strength training is the primary measure to combat osteoporosis- strong muscles put tension on the

Placing threaded bolts between the foot plate and leg frame.
Placing threaded bolts between the foot plate and leg frame.

attachment points of each bone, stimulating bone growth and increasing bone density.  Low risk weight-bearing activities are therefore considered essential to promote healing in an external fixator.  While I have been in a weight-bearing status since very shortly after the initial surgery, it was difficult to do more than rest a portion of my weight on my toes as I was standing while my foot remained cocked at a 40° angle.

Five wires pass through the bones in my foot- two through the metatarsals near my toes, two through the calcaneous, and one through the talus.  These wires connect my foot to the flat plate situated parallel to the ground; as my foot swells and my toes bend, the tissue around these wires aches and stings at various points throughout each day.  I was fearful of putting all my weight on my foot as it seems counterintuitive to avoiding pain- at first glance, it appears that any weight will just cause the wires to rip right through my skin!  To assist me with overcoming this fear, Patrick procured a fancy cane for me with a glow-in-dark handle and a violet floral print.  Little Riley takes every opportunity to use it as a sword whenever we are out and about and I let go of it for

My flat foot wearing a modified sandals and ready to walk.
My flat foot wearing a modified sandal and ready to walk.

even a moment.  With all of the wires in the way, wearing a shoe on my right foot is all but impossible.  I was able to modify a pair of sandals by cutting away the center strap and adornments; I tied loops on either side of the frame to fit the top strap through in order to keep the sandal from sliding off my foot as I walk and the result is a remarkably functional right foot.

The only hiccup I have had in the past few weeks was an infection in the deep tissue which failed to respond to antibiotics.  As the swelling and pain worsened at the site of the top bolt in the front of my shin, I began to worry the infection was spreading into the bone.  After an overnight stay in the hospital on iv antibiotics didn’t produce much improvement, my surgeon decided simply to remove the bolt.

There is much discussion on the online forum I frequent for individuals dealing with frames such as mine regarding the best method for removing the hardware for these frames once our time in the cage is complete.  Many individuals are proponents of having the entire frame removed in the doctor’s office with the aid of some valium and nitrous oxide.  My surgeon does not offer this option and instead schedules an OR visit with general anesthesia for every frame removal.  The reason for this, she explained, is that the large pins are actually threaded bolts which have been drilled into the tibia and fibula and adhered with an epoxy which can make them difficult to remove without some struggle.  It was one of these bolts which had become infected, but as she would only be removing one, we decided it could be done very quickly in the office and I would recover from the trauma.

Having experienced the fairly simple and painless removal of a long wire which ran all the way through my leg from one side of the frame to the other, I felt confident I could endure a single bolt being unscrewed.  After all, it didn’t seem to go that deep, right?  I walked into the doctor’s office a little nervous, but eager to have it out, and asked her if she would be using any gas or anesthesia.  She explained that she would have to go all the way downstairs and it was a very quick procedure hardly worth the effort.  I relented.  I wish I hadn’t.  I sat on the exam table with my legs up as usual and she placed a rachet over the top of the bolt and put her left hand firmly over my shin to hold my leg still.  She was about to turn to the rachet, but paused and looked at me

Pay no attention to that pool of blood under my leg.
Pay no attention to that pool of blood under my leg.

squarely and advised, “You’re going to want to lay down for this.”  I did as commanded and was grateful the nurse was near as I let out a blood-curdling scream as she cranked the first turn.  The nurse at my side grabbed my hands and squeezed, and they both reminded me to breathe as I clenched my jaw whimpering and the bolt kept turning.  She told me it was out, but the pain continued and I lay sobbing with my arms over my eyes as blood poured out onto the table from the gaping hole in my leg.  She quickly stuffed it with gauze, then wiped at the gory mess all over my skin so she could wrap the top half of my shin with a self-adhering rolled bandage.

Eventually the pain subsided and she asked me to stand on it.  I did and the pain was noticeable, but not unbearable.  She loosened the nuts holding the threaded bolts in place and told me to slowly walk around with my cane to see how my ankle could withstand the pressure without the support of the frame.  I paced around the room for a few minutes and she seemed pleased.  She tightened the nuts back up and gave me directions to loosen the nuts three times a day to “dynamize” the frame.  If I had no significant adverse effects from this, I am to loosen the nuts entirely on October 5 and leave them, walking completely on my own without any hardware support.

The last bit of good news for me was that my ankle is so well-healed she set the date for my frame removal on October 26.  This would be two months sooner than she had led me to expect before the first surgery.  I won’t see her again until my last x-ray to confirm the frame can come off just a few days before the removal surgery.  From now until then, I just have to walk and heal as fast as I can.

I’m so close I can already feel the flip-flops between my toes.

 


 

Walking with a Taylor Spatial Frame

I’ve created a short video of myself walking for posterity.  Someday I will show this to my grandchildren who will think I am much cooler than they had supposed.  Or maybe they’ll say , “Who watches videos anymore, Granny?  Why isn’t it a holographic projection onto my eyeball?”  Snot-nosed little shits.

 

 

It’s always something…

There is so much in life that we don’t see coming.  Even if we cannot be better prepared for the unforeseeable, we can at least be compassionate and have empathy for each other as we all stumble and struggle through our own unique trials.

The surgery to lengthen my tendon was intended to reduce the unbearable fiery pain enveloping my foot, and in short order I could verify that it had worked.  I couldn’t feel my leg below my knee beyond some vague feeling along my shin and a couple of toes that tickled, but the nerves inside that let me know I was in pain were in good working order.  I left the hospital on Saturday morning eager to have an evening home with my children before they headed off to Idaho for a week of camping with their father, and I was relatively comfortable within a day of returning home.  By Monday, I had stopped taking the pain medication on a schedule and was down to a dose in the morning and a dose in the evening.

While I was out of pain and back to work, the numbness and uncertainty around recovering all the sensation began to get me down as the week progressed.  I felt myself losing my rosy viewpoint and began to worry I was sinking into a depression.  I was waking up anxious and pessimistic, suffering from cold sweats and goose bumps despite the +90° heat, and felt drained of all my energy.  I broke down crying on the phone with my mother Wednesday afternoon and admitted that I was tired of this and really felt like I couldn’t do it anymore.  As she is so adept at doing, she lovingly kicked me in the ass with a pep talk that both scolded and lifted my spirits.  “You can cry for a few minutes, but then you’ve got to get right back up and do it anyway because you don’t have a choice.”  She was right, of course.  The decision to start this journey was not one I could change halfway down the road.  It doesn’t matter how hard this road becomes; it is the only road here.

Regardless of her advice, I continued to indulge my newly developed habit of breaking down in tears in the evening after returning home from work, and on the following morning when I woke.  On Thursday afternoon, I saw Dr. Workman for my post-operative appointment expecting praise for so quickly getting back to my daily routine.  She was not pleased with me.  My leg was too swollen and she directed me to work from home until the following week.  I texted my manager from her office and had his blessing in a matter of minutes.  She offered to refill my pain medication, but I told her I was hardly taking any now and had plenty, and at the end of the appointment I made a comment about my concern at possibly beginning to suffer some depression.  She looked uncomfortable and advised me to look into counseling.  We left without another word about it.

I spent Friday working from home and had the swelling well under control by the time Patrick got home ready to take me out to  dinner and the Timbers game that evening.  I felt ill, shaky, nauseated and weak, but I dragged myself into the shower to bathe before he got home.  As I sat on the bed listlessly drying my hair with a towel, he walked in and could tell I was not myself.  I burst into tears again and admitted I wanted to go to sleep for a month until this was over.  My muscles ached, presumably from laying around with virtually no activity for so long, and the overwhelming sense of despair and hopelessness that had taken hold of me was physically palpable.

Because Patrick is wonderful, he assured me we did not have to drag ourselves to the game if I didn’t feel up to it, but I convinced him I would feel better getting out of the house and forced myself to rally.  My sense of physical illness gradually increased over the next hours as we feasted on tacos at our regular pre-game dinner spot and then lined up in the waning evening heat at the ADA gate.  I visibly drooped in my wheelchair as sitting upright made me feel faint.  I couldn’t stop shivering and Patrick suddenly got very worried.

“You look miserable,” he said.  “Are you okay?”

“No,” I admitted.  “I feel awful.  I don’t know what’s wrong.  I must be getting sick.  My head hurts and all my muscles ache.”  I was on the verge of uncontrollable tears the entire time.  Patrick had brought a stash of medications with him to dole out if my foot began to swell and hurt, so he offered to give me something once we got inside and could find some water to take with them.  I agreed, not really thinking it would address what was wrong, but I didn’t want to force him to take me home when he sacrifices so much already every day all day long for me.  We made it into the game and nabbed our new favorite seats- ADA seating behind the goal line with an unobstructed view.  I remained silent and pensive, and he remained worried, until he urged me to talk to him about what was wrong once he’d found some water for me.  He doled out some medication and I stared at it in the palm of my hand as an idea struck me.

Without taking the pills, I turned to my iPhone to google “Opiate withdrawal symptoms” and realized in a matter of seconds what was going on.  In the week and a half or so that I had been taking such a high dose of medication around the clock- every three hours- my body had developed a chemical dependency that it now had to withdraw from when I suddenly stopped taking them.  The symptoms were everything I had been experiencing over the past few days since I had drastically reduced my meds: nausea, cold sweats, goose bumps, fatigue, malaise and depression, severe anxiety, muscle aches, headache…

“My god, Patrick, I’m going through withdrawals,” I said.

“Of course,” he agreed.  “Makes perfect sense.”

I took the pills he had given me and kept reading, suddenly ravenous for more information and how to get through it.  I read numerous forums where individuals extolled the virtues of “quitting cold turkey” versus “weaning”, recommendations for various detox secrets, and the inevitable advice to seek assistance from a medical professional.  Time ticked by as I read and soon I realized the symptoms had almost entirely abated- about 40 minutes after I had taken my medication.  By the time the game started, I felt more like myself.  As I do whenever anything important happens to me, I texted my mother, who also happens to be a seasoned ER nurse and my own personal webmd resource.  She advised me to take a smaller dose of the medications I had been taking and reduce the dose by a quarter each day or so, in small increments, but fairly quickly.

The next day we developed a schedule for my medication again.  I wasn’t taking a high enough dose to completely eliminate all of the withdrawal symptoms, but the symptoms would ease each time I took something.  I noticed that I could go about eight hours before I began to really feel miserable, which meant mornings were dreadful if I slept late at all.  That weekend was hell as the headache manifested itself in every bone in my face and nothing could make it stop.  I was terrified of taking anymore of the pain medication than we had agreed, which meant toughing it out when my foot swelled at the end of the day.  The depression would come in waves that swelled over me and pushed me to the edge of complete despair until Patrick would force me to take something and the darkness would gently ebb away.

Patrick stocked the house with supplies as though I had the flu; I was too nauseous to bring myself to drink much water, so he bought me ginger ale and juice to try to keep me hydrated, and soup to entice me to eat.  My mother suggested seeing my doctor about a medication for the anxiety, but I hated the idea of taking yet another drug when I was already enduring such an ordeal.  I compromised by taking over-the-counter unisom- a fairly benign antihistamine commonly used as a sleep-aid- to calm myself in the evening and help me sleep.  I took to lounging in the tub for hours at a time to ease the unrelenting muscle aches, something I had not yet done with my frame for fear of infection.  I kept my foot out of the water the first time I tried it, but it was difficult to relax while I held my leg aloft the whole time.  I researched how to turn it into a bleach bath- an idea my doctor had already approved- and took to adding a quarter cup of bleach and epsom salt to my bubble bath which enabled me to soak my frame in the water.  According to my research, days 3-5 are supposed to be the most difficult part of the detox period, and I reasoned I had technically begun to detox around Monday when I suddenly ramped down my dosage.  The entire ordeal could last a couple of weeks, but by the middle of the second week I was feeling significantly better.

My weaning process took about three weeks total before I was no longer taking anything regularly.  As I was feeling better, I was also more mobile, which meant more swelling and pain from all the activity by the end of the day.  After many discussions surrounding my fear of going through this all over again, Patrick convinced me to take small doses of pain medication when I need it, and ONLY when I need it without a regular schedule to avoid developing a dependency again.  I had learned a valuable lesson- addiction is real and the risks have to be taken seriously.  I suddenly understood the necessity for strict guidelines around prescribing these dangerous medications, and I wanted to warn everyone I knew how easily and quickly they can become a problem.  I wanted to talk about it openly as I realized how common my own situation must be and how many people must be dealing with it silently.  So many of those struggling with chronic pain are in this difficult position, but I felt sharply the stigma surrounding the topic in my own disappointment in myself, as though I somehow had any control over how my body reacted to a medication I needed to survive my medical ordeal.  If I was judging myself so harshly, I wondered how others were judging me as well.

There is so much in life that we don’t see coming.  Even if we cannot be better prepared for the unforeseeable, we can at least be compassionate and have empathy for each other as we all stumble and struggle through our own unique trials.  I’m wiser now for this experience, and will know how to avoid repeating the same mistakes, but I’m sure to make new mistakes in my next ridiculous life fiasco.  The only thing I can really do is love myself regardless, as much as I would love any other flawed and struggling human being doing their best to survive.

It’s always something, after all.

 

 

 

 

One More Surgery

The only thing left to do now is heal.

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 cartoonists rendition of an Achilles tendon lengthening stolen from another site that will likely sue me for this.
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.
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.
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.

The only thing left to do now is heal.