Part woman, part machine.

Hey! 

Okay. So I don't exactly know what I'm doing with this whole blogging thing. I have a feeling this first post is going to be a bit excessive, but I dunno where to start so it's all LET ME TELL YOU MY STORY AND STUFF. I swear the rest of it won't be nearly this long.

As I was attempting to research the process of leg lengthening (distraction osteogenesis) before I was due to go into surgery myself, I found there wasn't a whole lot of stuff that I could find from the perspective of the patient. A lot of stuff from the surgeons and specialists of the world, but not a heap from the people who had actually gone through it. Because of that, I knew what the procedure entailed, but as the recipient, had no idea at all for what to expect. I was not mentally prepared. And so, 'Walking in circles'. I'd be happy if I could get through to even one or two people looking at having a similar procedure in the hope that I can somehow prepare you for what you're about to experience.

So...uh...I guess that's why I'm sitting in bed now, still awake at 4:30am and alternating between typing this out, pulling ninja moves out on the moths that keep flying at me and feebly attempting to fend my sleeping boyfriend back to his side of the bed. Why 'Walking in circles'? It's a running joke over the years, I have one leg shorter than the other. And this is why I'm currently having my leg lengthened.

I should probably start with a bit of a back story here.

My entire life, I've had tibial kyphosis - a curvature of bone (usually the spine, i.e. a hunchback) in my right leg. Because of the curve, it means I have a 4.2cm (42mm/1.65inch) difference in leg lengths at last measurement. Through primary school, and then high school, it had gradually worsened from a 2cm difference, to 2.5cm, jumping up to 4cm and now 4.2. I had to have all my shoes specially altered at an orthopaedics, which meant I could wear only particular shoes with particular material in the soles. Through out my childhood, my hospital visits were every 6 months. Then it became once a year. Just to monitor the increase of the length, x-rays and such. Then it stopped altogether when I was 14, when I asked what could I do instead of wearing my shoes. The shoes pointed out to everybody at school something was wrong with my legs, and I was sick of it. I just wanted to be normal. I was told my only other option was surgery. And then I had the operation explained to me. I'll go into more detail with another blog post, but basically I was to have my leg surgically broken, pins put into them that were attached to struts and we would need to turn these struts every day. I was told I probably wouldn't be able to walk normally for about a year.

Let me tell you: you do not tell a sports loving, 14 year old girl that she won't even be able to walk for a year. I ran out of the hospital in tears and didn't go back. And that was that for eight years. Through out my late teens and early 20s though, I began to become even more self-conscious of it. My friends still pointed it out to me, high heels made my limp glaringly obvious, and I failed the medical examination for the Armed Forces. I went back to my Mum and I told her, "The surgery. For my legs. Let's do it."

I was determined. I was going to get this done. What was a year in the scope of my entire life? It would be worth it in the long run. It didn't matter how much it hurt. Was it going to hurt much? And what sort of pain would it be? I didn't know. I couldn't find any accounts from patients themselves. But I was determined to go through with it. And I still am, but now I've got no choice, haha.

We went back to my specialist, who seemed just as surprised to see me back as my mother was when I cornered her in the kitchen about it. He referred us onto an orthopaedic surgeon at the Mater Private Hospital who specialises in adult lower limb and paediatric othropaedics. After a couple of preliminary appointments to see if he could do it, if I was really going to go ahead with it, six months of paperwork, private health and insurance dealings...I was booked in for surgery on the 5th of February, 2013. The frame I was to be having on my leg is called Taylor Spatial Frame, it's similar to the Ilizarov Apparatus. I'll write more about the frame itself in another post. At some point.

There wasn't any preparations, so long as I didn't smoke or drink within 48 hours of my surgery and no eating for about six, I think. We got there about 11am, sorted out my check-in, was taken upstairs to the waiting room ('welcome lounge'), hung out with my boyfriend and my mother for a couple of hours, some last minute checks of paperwork and then I was being called for the pre-op treatment. Hospital gowned up and all. Waited about 20 minutes again to be called by another nurse to be taken to a patient-only waiting room, and then about another 20 minutes later - after the anesthetist and Dr Astori swung by - I was being wheeled down the hall for surgery. I was surprised by how smoothly it all seemed to go. Granted I began to cry somewhat when the needles began to be administered in the patient-only waiting area (I HATE needles), and then almost had a pre-op panic attack when I was wheeled into the operating theatre itself...but one moment a kind, young assistant was asking me questions to calm me down and take my mind off the needle I was being given and the next, I was waking up with a bit of an uncomfortable pressure on my right leg and a female voice telling me the surgery went really well. I don't even remember closing my eyes. I was heavily out of it from the drugs, so once I realised the thing was actually on my leg and what had happened, I became aware of the pain.

Ye gods. It hurt.

 It felt like my leg was on fire and I had a panic attack in the post-op recovery room. I don't remember too much, but I do know I was near screaming and I heard voices suddenly speaking incredibly fast to one-another and I think they may have rung somebody. I heard someone say, "We've given her morphine, but she looks like she's in absolute agony." There was a woman, she introduced herself as Kia ("Like the car!") who promised to stay by my side and who constantly talked to me, which helped a lot. I couldn't really open my eyes, as a side-effect of the anesthetics I'd become extremely sensitive to light. I'd even asked Kia to put something over my face because closing my eyes wasn't enough. Then something was pressed into my hand, I thought it was just something to squeeze when the pain got too much, I think I'd been balling my fists up because I remember somebody struggling with my hands for a moment to get it in. Turned out I was half-right - it was hooked up to morphine and I could press it every five minutes for pain relief. She stayed with me, talking, until they could take me back to the ward. You're supposed to be in there for about two hours, but I had no idea how long I'd been in for. I was really groggy, slipping in and out of consciousness. I was wheeled into a four-person ward, and I was lucky enough to wake up right as I saw my boyfriend and my parents walk through the door. I must have looked like hell with the tubes going everywhere (I had a cannula in my arm as well as being hooked up to an oxygen machine, the nose pieces were infuriating!), because they all had worried expressions on their faces. I couldn't see the frame yet, it was covered in bandages. I don't remember too much, honestly. Too many drugs.

My first night was a nightmare. Drowsy as hell, emotional as ever, still slipping in and out of unconsciousness, no appetite despite fasting since 7pm the night before, I felt motion sick and itchy all over. I had to go to the toilet but wasn't allowed to get out of bed as yet, so a nurse was holding a pan under me but I couldn't go. Combination of the drugs still playing with me and...well, she was right there! Holding something for me to pee in! Ugh. After a couple of hours with no results (she even tried the running water trick), a couple of the nurses lifted me somewhat ungainly into a rollator that I could sit on and had a hole in the middle so I didn't have to get up. They wheeled me over the toilet, I finally went (almost cried with relief), and then back to bed. The second time I had to go, I managed to use the pan she was holding. This time I actually did cry out of embarrassment. I felt so helpless.

A couple of days after surgery, dressings are still on and with an
orthopaedic 'shoe' to prevent foot fall.

I was eventually moved to a private room, but was still suffering nausea. They put it down to my body not being a huge fan of morphine, and so I was taken off it and put on a four hourly 10mg dose of Endone and a six hourly dose of Panadol. Endone, oh sweet Endone, how I love you. Unfortunately it also blocks you right up, so make sure to keep a supply of Metamucil or some kind of laxative on hand. I got my appetite back slowly and by my third day in hospital, I was starting to want proper meals again. I was admitted on a Tuesday and I was released on the Sunday, so five nights. My surgeon stopped by to see me every morning, he seemed extremely satisfied with how everything went. Not going to lie, there were moments where I'd be completely fine and trying to re-organise the hospital furniture while hobbling around with my rollator, and then there were times where I'd be lying in bed, bawling my eyes out over the frustration of having your independence taken away. I considered it an achievement on my third day when I could have a shower without somebody helping me out other than having to tape a bag over your leg (having somebody dry your butt-crack for you is extremely weird). And especially with the initial not-knowing phase. Where something would happen, and the nurse would walk out to call the doctor or consult other nurses and you'd be left lying there wondering if your body was falling apart or if it was completely natural. One instance I really freaked out was when I started to get pins and needles in the toes of my right foot and then I lost the feeling almost completely in my second toe. I had no idea if that was considered normal, and when the nurses came, they played with my toes for a bit and then went to call Dr Astori without really talking to me so much as each other. Being left in the dark like that when your body is doing weird things is terrifying. Turned out getting pins and needles in your foot is entirely normal and nothing to worry about. You'll also have bad circulation and swelling in your leg for about a year, I found out today. Even after the frame comes off.

A tip for underwear usage with these giant frames on your leg (they are quite bulky) - bikini bottoms that tie at the side, or girl boxers. Or, y'know, nothing at all. Bring pads with you to the hospital though, girls, you're given a blood-thinning injection every morning (your choice to have it in your stomach or your upper thigh) to avoid blood clotting and it is likely to force an early (but light) menstruation. Guys, I dunno, boxers should be fine, I guess. I wear mainly dresses, skirts and sarongs, wearing pants is a bit of an issue with the awkwardness of the frame. If you're just chilling around home, which you probably will be doing a lot - then an over-sized t-shirt is fine. You should definitely try to get out of the house though. I was recommended every second day by my surgeon, he says it helps with mental health as well as getting the necessary vitamin D from the sun and getting out into fresh air. I personally don't go out of my way to leave the house, because I'm unfit and using the crutches constantly really takes it out of you, haha. I can't stand for long periods of time, my foot swells up more than I'm comfortable with. The second day I was home, though, we went out to the local shopping centre. Had to borrow a wheelchair from concierge, but it was good to be out and about.

In the hospital, they change your bed sheets and bins every day, as well as vacuum the floor and wipe down all surfaces (walls included) every single day. We're trying to stay as hygienic as possible at home, to try and stave off the risk of infection. We change the bed sheets every week, the floor is swept every day, we've got about four cans of Glen20 just lying around, hand sanitiser, anti-bacterial handwash, the laundry gets washed with an anti-fungus, antiseptic concoction...I know I'll get one eventually though - almost everybody gets some sort of infection though out the process. I mean, essentially, you have open wounds in your leg for months at a time. There's no special dietary requirements, but to be safe I'm also taking vitamin B and E supplements to give my immune system a boost and the fridge is full of fruits.

The first cleaning of the pin sites!
At first I was grossed out, but soon became fascinated.

Every day the pin sites need to be cleaned. While I was in hospital, they weren't touched until the day I was released. It's very important to clean them daily now though. My boyfriend does it for me, as we live together, downstairs at my parents place (trust me, you need all the help you can get with this thing on your leg). It's now three and a half weeks after my surgery and last night was the first time I showered without having to bag my leg up. So the cleaning of my pin sites has changed slightly. At first we were cleaning them right after my showers. I'd shower, then when I came out, I'd lie on the bed and my boyfriend would have laid out all the first-aid stuff we'd need, having disinfected the table they're on first, of course. Wearing gloves, he takes the medical tape and band aids off from around the pin sites ('injection pads'), wipes surrounding skin using individually sealed (sanitary) cotton swabs with a saline solution the hospital provided us with. We use one cotton swab to each pin site, it's important not to use one swab for more than one pin site because if one pin site does happen to be infected - you don't want to spread that infection. The skin also has to be pushed down to make sure it's not trying to grow up the pin (this is called 'tenting'), this part is the worst and it's not even *that* bad unless you actually have to break the skin. It's a pinching sort of feeling. But if you have to break the skin...yeah, that hurts a bit. Then once that's done, the band aids get put back on. We've been cutting a 'Y' shape into the ones that need to go around the bigger pin sites, the ones in my tibia, because they're a bit hard to wrap around them completely. To keep them down, we also cut a bit of medical tape and put that over where we've cut into the band aid. The cleaning process is basically the same now, only I can take the band aids off before my shower (water only on the leg being stretched, no soap - helps if you have one of those shower heads where the nozzle can be detached from the wall), and then we continue with the pin site cleaning.

First progress photo, 7mm down! 4.3cm to go...

As I type this, I'm at about a 1.2cm stretch in my leg. We're going for 4cm (not the full 4.2, you don't want to make the short leg the long leg by accident!), so another 2.8cm to go. Some of the struts are changed by 2mm a day, because we're also trying to straighten my bone as well as lengthen it. We're turning quarter of 1mm, four times a day. So 1mm per day. At first we tried to stretch by the full 1mm in a go, but I'm a wimp and it was the single most painful thing I have ever experienced. Nothing I read had prepared me for the pain. The screaming put off everybody else from wanting to turn it that much as well, so we cut it down and now I'm doing fine. It's a constant state of pain, but your body adjusts to it best it can. The day before yesterday, I had no pain killers at all. Yesterday morning, I had two Panadol when I woke up and that was it for the whole day. At this stage, it's more uncomfortable than anything. It's just pressure, as if a snake decided to wrap itself around your lower leg and squeezed. I had one of my struts changed completely to a different size yesterday during my weekly visit to Dr Astori, and it's been set a couple of days in advance, so we don't need to touch that for a while. Yay! He also warned me that while I'm doing really well at the moment, the last week of stretching is the worst. So...we'll see. I still have a whole box of Endone left. I may need it.

Second progress photo, 1.2cm distraction.

As well as adjusting the struts every day to stretch the leg, I also have to do stretches every day to make sure I don't lose complete range of motion with my foot. I'm allowed to put weight on it, not full weight, but enough pressure to try and put my foot flat to the floor. I, er, may have forgotten about my leg situation earlier and got out of bed to stand straight up on my leg. Yeah, that was a bad idea. Wasn't up for long. Didn't even make it to a standing position. Immediately collapsed on the bed, gasping. Had to fight not to pass out. So that was amazingly painful, don't do that. Other than that, it really isn't that bad at the moment. Just awkward and uncomfortable. Oh, I was also given the all-clear to drink, but I'm limited to one standard drink a day. So I have a beer at night before bed, to help the sleep come easier. Well, to try to. It's now 7am and I'm still awake...the beer definitely helps you relax, anyway.

Speaking about relaxing, I should probably get some rest. If anybody does happen to read this and have any questions, feel free to e-mail me: sampaguita.cs89@gmail.com

Peace out.