Just a quick note...okay, not really, more of a long rant.

So I've been re-reading back over my first post for this thing, and just wanted to clear some stuff up - the worst part of everything is the first month or so. When your daily adjustments are being done and you're still trying to get dressed with this thing on your leg and oh, could you carry only everything for me because my hands are supposed to be holding my crutches?

That stuff doesn't last all too long. After the first couple of months, you settle into your frame more and life kind of returns (somewhat) to normal. In the end, it became about as annoying as having a sprained ankle. The last three or so months I was even able to walk (read: shuffle) around the house/backyard without any crutches at all and before my cast, I was back driving again. With the frame on my right lower leg. In a manual (stick shift, for the Americans playing along at home) car. And it was fine. Oh, well...I'm kind of a bit sort of fairly sure you're also supposed to get the all-clear from your insurance company once you prove that you can pull off an emergency stop, but...y'know. Yeah, you should probably get that out of the way before you get back in the drivers seat...

With my cast on now, I'm not driving anymore because my foot is pretty much covered and I don't have any range of motion in my ankle, obviously. Means it's also a bit hard to walk as much as I'd been able to with my frame. But that besides...yeah, life went on. I got rid of the bikini bottoms as quickly as I could and returned to normal underwear, just had to navigate bits and pieces of clothing over and around the frame. 

I will mention a couple of things that drove me absolutely crazy over the whole thing, and they have nothing to do with being in a frame myself...I've been dying to say this for MONTHS and I'll probably get flamed for it, but I don't care. This is my blog. Don't like it, don't read it.

1. I get that not everybody has the greatest strength of character, or best willpower but never, and I mean NEVER underestimate the power of a positive attitude. Even if it's forced. Just keep telling yourself that everything is going to be okay, and you'll pull through. I've come across so much negativity from people in different "support" groups, I ended up doing away with them altogether. In fact, one of the group descriptions was something along the lines of "to recognise the pain it brings us daily". Admittedly, I should have known from that not to join, but alas, I learnt my lesson. Ever heard that saying, "Misery loves company"...?

Yes, you will have some mother b*tches of days. You've got a broken bone that you're manipulating, you're doing some very naughty things to your skeleton - it's going to hurt. You're allowed to have a bit of a whinge every now and again. But as soon as you've gotten it out of your system - chin up! I did much better, was much happier on my own than talking to the majority of people in groups who liked to focus directly on their frames and HOW it was stopping them from everyday living. Distract yourself if need be. TV shows, reading, scrapbooking, take up the guitar, whatever you need to do - do it. It's there. No amount of complaining is going to change that. At least you actually have a leg that it can be done to. At least you're not one of the unfortunate souls spending their days lying in an oncology ward. Even they try to stay positive. Talia Castellano, anyone? In the words of this 13 year old girl, "When people ask me [how I stay positive], what do you want me to do, be depressed?"

I have only met one other person that was as positive as I was, and they also left the group extremely quickly. They never even had my choice of being in a frame - they were involved in a particularly nasty motorbike accident and had their frame on much longer than I have (and obviously under much, er, grosser circumstances). And I can tell you for sure that we kept in touch and I actually enjoy talking to them, though we talk more about cross-country treks and gym than we do about our frames, haha.

Life goes on and it's up to you whether or not you're going to have fun during it, or sit around being miserable and wallowing in self-pity.

This kind of leads into my second point...

2. More than once (sooooo much more), I would come across people in frames who would claim that this whole thing "proves who your friends really are!" because they would stay home and they wouldn't get the amount of visitors they expected. Or maybe they really did just have bad friends? The point is - just because some things in your world may have forcibly come to a stop, don't expect that anybody else's will. And if you're being consistently negative, then frame or no, nobody is going to want to spend time with you.

Once you're alright to start leaving the house and getting about, then do it. Don't wait for people to come to you. Just because someone hasn't visited you since you had your surgery does not mean they consider you any less of a friend. This should just be common sense, but it hasn't proven to be all too common. Life gets busy. Maybe not for you, but it certainly does for other people.

Oh, man. That feels better. I could have expanded greatly upon that rant, but I got the main points I wanted to cover out of the way.

If I have offended anyone, I am genuinely sorry, but I really can't stand negative people and I won't have them in my life.

On a lighter note - 26 hours until I get my moon boot! HELLS YEAH!

One, two - WHOOP, WHOOP!

I'm free! The frame is off!

I won't go through the pre-op stuff, because it was pretty similar to the first time around. Again, don't remember being rendered unconscious. One moment I was telling somebody that I felt like I had been smoking something, the next, I was a bit more than half-asleep and throwing up into a hospital vomit bag. If I ever have to have morphine again, it'll be too soon.

Leg felt a lot lighter already, and I remember crying the instant I realised that the surgery was over. Kept repeating, "It's off, it's finally off..." to the nurses looking after me.

Cast! Hospital band still on, but about two minutes after getting home.

Was just a day admission, my surgery started about 11am, done before midday and I was checked out around 4pm the same day. Albeit still feeling slightly nauseated, drowsy and light headed from my body telling me it was hungry but having no appetite whatsoever. Got home and crashed hard, woke up around 10pm that night feeling almost back to normal.

So my cast is on for two weeks, it was either that or six weeks - it depended if we wanted to pay $150-something for an off-the-shelf moon boot or $750-something for a custom made moon boot that would be much more rigid. They aren't really covered by health care though. All this stuff was starting to drive me crazy though, and I had heard plenty of experiences of what having a cast was like so we went with the more expensive custom-made option. Two weeks is still too long, I actually liked having the frame on more than I like this damned plaster thing. Itchy and claustrophobic. Only two more days until it's off though. Still proud of the fact I've yet to get an infection. Let's keep fingers and toes crossed I make it out of everything as one of the few 100% infection-free TSF/Ilizarov patients! ^_^

But hey! I can cross my legs again.

Picture Error.

Oh, and I know about some previous photos not showing up - I think it happened when I reset my phone and consequently, my Google account. I'll get around to fixing those up soon, promise.

Kimimaro.

Such a cool name.

Healing.

So updates...

A rough date for frame removal has been set for September the 3rd. A bit later than originally expected, I'd hoped to have this thing off by now. But oh well.

Have begun using an Exogen Bone Healing System, it's an ultrasound device that basically stimulates your cells into developing bone faster. Can find more about it here: http://www.exogen.com/patients. Apparently it's not covered by private health and would normally cost about $1200 - $1600ish to purchase, but I was lucky enough that a representative had left an extra machine the day of my appointment for my surgeon to give to "somebody deserving", so I scored mine for free. Whoop!

Slightly inflamed.

The area around where my tibia has been broken has seemingly became inflamed overnight. I'm honestly not too worried about it, since inflammation and bone growth go hand-in-hand. But the stabbing pains are a tad irritating. I've started going for walks around the block every second day as being bed ridden has lost it's novelty somewhat, but I may have to stop until the pain settles down again.

Can see the area raised here.

Not much else going on with it, other than sitting around and waiting for my next appointment. Hopefully will get the green light to go ahead with the Sept 3rd surgery, but we shall see. Once the frame has been taken off, I get a lower leg plaster cast on for about a week while my moon boot gets made up. Not looking forward to the cast. At all. But once the moon boot is ready, I get it off and go into that instead. Physio is supposed to start two and a half weeks after the frame removal so I can learn how to walk normally again and unlearn any bad habits the crutches may have given me. Should be fun. [/sarcasm]

Can still totally rock heels, though.

Live long and prosper.

Peace and long life.

Extreme delay, much?

Haven't updated my blog in a little while, because there honestly hasn't been a whole lot to report.
I've had my four wires removed though, they were removed about a month ago now. Since the parentals were overseas and I didn't want them to come back to more hospital fees, I decided to stop being a wimp and get the wires removed in my surgeon's office for free. Took two Endone and two Panadol about an hour beforehand and that was it. And when it was over, I realised how silly it would have been if I'd elected to go
back under for it, it was all done so quickly.

Lying in my specialist's office, the band aids were removed from around the pin sites, my leg was cleaned with some sort of sanitising solution, possibly saline but I'm not too sure and then my wires were loosened slightly from my frame. It was all a very weird sensation, able to be felt actually within my leg, within my bone, almost verging on painful and yet not quite...not too sure exactly how to explain it, other than plain out weird.

Bit of bleeding afterwards...

Then the wires were both cut on the inside of my leg. My leg kind of felt a bit freer, but this is when it started getting a little uncomfortable - the wires felt as if they jolted my bone as they were cut. I was told to take a couple of deep breaths and then before I really knew what was going on, my surgeon pulled, hard, on the wires, one right after the other and they came out clean through the other side of my leg. The wire removal itself took maybe three seconds. Five at the absolute most. I yelled at this point, but it was more like a brief yelp than resembling an actual scream, heh.

About a month after the wire removal.

Mother of everything mighty, it hurt.

But only for about five seconds. Albeit those five seconds were pretty horrible...and then I think my body may have started going into shock or I was having some sort of adrenaline kicking in from the sudden pain - I'd suddenly become nauseated, dizzy and light headed, vision was blurry, had difficulty breathing and felt overall very weak. But had some water and my specialist talked me through taking some deep breaths and made me sit still for a little while. About five minutes later, I'd calmed down enough to get off the table and hobble around again, although the actual pain really only lasted a couple of seconds.

Six weeks of bone growth.

 The entire appointment from walking through his door to walking out again took maybe 10 - 15 minutes, definitely not worth having to pay anesthetist fees and clearing half a day to go into surgery for it. Waterproof bandages were put over the holes left in my leg that I was to leave in place for three days before we could take them off and then leave them uncovered.

As I said, that was about a month ago and the pin sites are almost completely healed now, I think. My ankle immediately felt much freer to move around after the removal and I have to say that I still don't regret a single thing I've done so far.

Except for not take a 'before' picture, forgetting to have done that still bugs me...

So apart from that, there hasn't been all too much change. There have been good and bad days, but mostly good days. I'm near bedridden for the bad days and the pain is enough that just rolling over in bed is agony, but I'm saying this more as a statement of fact of this is what happens rather than an actual complaint.

Had a check up a few days ago, have about six weeks of bone growth and my specialist seems happy with my progress, so I'm happy as well. ^_^

Aaaaaaand we're done!

We've stopped stretching! Whooo!

There have been two check-ups since the last entry, but nothing much to report. Everything has been going pretty much to plan with not a heap of change other than the space between bone fragments.

My fourth process x-ray, approx. 3.5 stretch.

Since we've stopped stretching, the pain has definitely settled down, which is great! I get a bit of pain at the outer top wire - the most annoying of the wires because like I've explained before, it's lodged in the muscle group that is most involved with general leg movement. Cleaning is still painful, but a lot less than it had been previously. Before I would take two Panadols before my shower and then an Endone after cleaning, but now I only take the Panadol.

The four smaller wires are able to be removed now, there are two options: to have them cut and pulled out in Dr Astori's office with just a couple of Endone and Panadol or to go back into surgery and be completely under while they are removed.

After having agreed with my Mum over what a baby I am when it comes to pain, we both prefer if I was put under anesthetic for the process lest we scare Dr Astori's other patients off with my cries of pain (the walls in his office are pretty thin). My parents are going overseas soon for about four weeks, and they want me to wait until they back due to lack of fundage. The plus of getting them removed in his office is that it wouldn't cost any extra, but...yeah. Pain. I'm being a baby, I know. My next appointment isn't for another month, so I have that time to change my mind/talk myself into having momentary courage. We'll see.

So right now the only thing I'm having to do is to stretch my calf muscle out. Because while the bone

Post-stretch! 4cm length attained!

fragments have been stretched into the correct position - my calf muscle hasn't quite caught up yet. This means my foot drops down a bit and I have limited range of motion in my foot.

My goal for my next appointment is to be beginning to put more weight on my leg and only rely on one of my crutches rather than the both of them. I'm not too sure what else to write, there really hasn't been a whole heap going on, but if anyone has any questions, feel free to ask. :)

Oh, and happy Easter! Enjoy your guilt-free chocolate eating today. ^_^

I am not fond of Telstra.

Had my last check-up with Dr Astori on Wednesday the 13th, wasn't able to update since then because our WiFi connection at home has been pretty sketchy the last few days. More so than it usually is, I mean. Telstra, do not like.

Everything is still on track, Dr Astori still seems quite happy with how everything is proceeding and says that everything looks as it should.

I've started the Keflex/Ielex anyway, as a couple of the pin sites on the outer side of my leg have been seriously bugging me. They were quite a nice shade of purple for a little while, which worried us slightly, but apparently they're not infected until they turn red. A really bright, fire engine red. Basically if it does get infected, we won't have any doubts about if it looks infected or not, we'll know for sure. I'm just going to finish this round anyway, but we have another script if I actually need to take them for a serious infection.

Progress x-ray number 3. Eep.

It's been suggested that instead of doing all the turns at night, when my boyfriend gets home from work/before bed, that we attempt to do as many as we can during the day or before he leaves so that my body adjusts to it before we go to bed and hopefully, that should ease the night pains. The night pains haven't been so bad recently, maybe because of that, but just in case, I take a couple of Panadol before going to bed and if I wake up again, then I take the Endone. I'm allowed to take 10mg (two tablets), but I've been trying to limit myself to just one at a time because I don't want to become too reliant on pain meds. It's still pretty sore in the morning when I wake up, though. My morning ritual is to immediately have a couple of Panadol with coffee before even tucking into breakfast. I've been trying to eat a bit healthier too, I went off the fruits, vitamins and green tea for a bit and that's when my pin sites seemed to bug me a bit more. I have no idea if that had anything to do with eating like crap (eat all the junk food!), but y'know - better to be safe than sorry, I guess. Too bad lychee's are out of season now, though...banana, strawberry and lychee smoothies are amazing..

Anyway, there's still about a week and a half until we stop stretching, I think, and I've been told that once we do - everything that's annoying me about my leg should ease up. I'm also having the four smaller wires removed once the stretching has stopped, which I'm really excited/nervous for! I'm excited to finally start being able to take the device apart, even if the majority of it is staying on another five months, but I'm nervous because it can be done whilst in his office by having the ends cut and then pulling the wires out through the skin. I seriously hope I'm getting some pain killers for that. I'm pretty anxious as to how it's going to feel during the removal...but I cannot wait to get these things out of me! Haha. The five big pins/screws in my tibia are fine, my tibia isn't exactly having too much movement when I'm trying to get around, but it's the smaller pins/wires that I've been told everybody complains about. Especially the two on my outer side as they're going through muscles that do deal with quite a bit of movement when the leg is being moved, flexed, etc. They're also the most painful areas to clean, so I'm looking forward to eventually only having five pin sites (and the easier ones, at that) rather than having the entire nine to get through.

My foot is still swelling up, obviously, which has been a pain in the butt when it comes to sitting down to study or standing for too long. I still have my leg compressor socks from the hospital, it was put over my leg that wasn't to be operated on (the left), but we've found that if I put as much of it as I can over my right foot - the swelling gets better! My foot is feeling like a foot now, and not more like a glove filled with water.

We'll see how tonight goes though, because tonight is that concert I mentioned earlier that I'll be working. I'm sure I'll manage to get through the night, but it's the next couple of days (nights...) that I'm worried about. Damn you, stubbornness! Ah well. We shall see...

Sunday = SBS PopAsia

Haven't had Endone in about three weeks now, then BAM. Two separate doses, plus another two of Panadol last night.

Try not to overdo it with the weight-bearing, guys.

Haven't been doing too much of it besides walking (shuffling?) to/from the toilet (with crutches, of course) and the dining table (which is about two metres away from the bed...) - and then on a 2mm stretch day, went to a friend's gig in pirate costume and spent four hours without putting my foot up and trying to weight-bear as much as possible. Without any Panadol or Endone, which I should have taken with me. That switch was not entirely welcomed by my body, as evidenced when I tried going to bed after the gig last night.

I was waking up every half hour (at least) with searing pain down the front of my leg. It felt like either somebody was trying to hammer a nail through my leg, or my tibia was trying to break through the skin. Take your pick. My boyfriend actually ended up being woken up a couple of times when I woke up screeching in pain - and he's a heavy enough sleeper that there have been times I've pushed him from one side of our queen-sized bed to the other and it hadn't bothered him in the slightest.

Sleeping is usually not that bad, I'd even found ways to get somewhat comfortable by sleeping on my left side by moving the pillow in between my legs. I keep a pillow under my leg usually when I'm lying in bed - especially since we have feather pillows, I find it helps accommodate the framework more while resting. But last night, there was nothing I could do to ease the pain. The Endone and being generally extremely tired kept drifting me off to sleep, but never for long enough and it did not help the pain. Or, if it did, then I do not want to know what it would have been like with no pain relief at all. Definitely in the top three most painful nights I've had so far.

So today is going to be spent predominately in bed. I'm definitely not trying to stop you from trying to walk or weight bear, not at all. You're supposed to be trying to do all of that. Just trying to warn you not to try and do too much, too soon. As much as you may think you'll be fine and you can handle it - never force yourself too much, or you'll just end up paying for it later. Do what you can, where you can, but do try to take it as easy as possible so you don't set yourself back.

Which means next weekend is going to be interesting, as I'm working merch for Ensiferum (European folk metal band) and since they're one of my favourite bands, I'm being too stubborn to turn the gig down. I figure being behind the desk is better than being out on the other side of it, but that's still at least an eight hour shift. Going to try and work myself up to it through out the week.

Ah. Well, we'll see.

Don't forget to keep flexing your foot.

You know you're desperate to find ways to get out of studying when you catch yourself daydreaming about scrubbing the toilet...

Hospital check-up yesterday, not so much to have an x-ray or monitor the stretching process than to have my pin sites inspected. We suspected a couple of them may be starting to become infected, so Mum made an appointment with our local GP because we didn't want to be bugging Dr Astori with every little obstacle when he can get really busy. Astori's office suggested we go in to see him instead though, since GPs don't generally know how to handle the entire process and apparently don't often feel qualified enough to make decisions when there's something like this attached to my leg. Which is fair enough, I guess.

So we went in, stripped off the band aids, and he gave them a look-see. Whole appointment was about five minutes. Turns out while one of them is very slightly inflamed, they all have the A-OK from Dr Astori. While they have been weeping blood and pus, he said this was entirely normal and to be expected. It was suggested that the cleaning over the next couple of days should be a tad more vigorous than previously, and if the redness and swelling from the one wire that's bugging me hasn't gone down - then I'm to start some antibiotics, Keflex (cephalexin) and should start to see an improvement in a couple of days after that. But the wires are the ones that will be giving you the most grief and be the most annoying. Once the stretching process has finished (another 18 days to go!), then the wires can actually be removed right in his office. ("I can just cut them and pull them straight through the skin!" - Oh, *that's* going to be fun...)

Just a heads up if you haven't glanced over to the photos already - they're a little gross. That's how they're supposed to look though. Apparently. I still feel like they don't look right, but then again what's right about a metal pin sticking out of your leg?

The cleaning has started to get seriously more painful. Last night's cleaning was a near horrid experience. Turned from being a quick pinching feeling to being akin with being stabbed in the leg. So y'know, fun times all around. I like to think that my pain tolerance is being increased every day I have my frame on. I shall soon be indestructible, just you wait.

These photos were taken right after coming out of a shower, but before cleaning. Another warning: I haven't shaved my leg in a couple of days. I am the hairy woman! Haha. I'm trying not to irritate the skin too much.

This is the wire pin site that Dr Astori agreed was a bit red and puffy.

A close up of the bigger pins that we were also worried about.
But no. This is normal.

During the cleaning process.

Random Shots

Here, have some random photos!
My only regret is not getting a 'before' picture. Ugh.

Right after having a shower, about to start the pin site cleaning.
A couple of the pin sites looking slightly red and irritated, but nothing
too bad as yet. Very small amount of pus came out of one.

Another just before we started cleaning.
Open wounds are yummy (not). It's a strange feeling knowing
these pins are going through my bones...

The cleaning process.

All clean and patched up again! First time using different band aids other
than the IV ones, since we've run out of them for the moment...

One of the IV band aids, with a bit of medical tape over the cut into it,
just to make sure it's completely covered the wound.

Swollen foot. It'll look like that for about a year, even
though my frame comes off in about four/five months.
The cut you can see is where Dr Astori went in to cut the bones,
the small, dark, round mark above my ankle is where a screw has been put in
at the bottom of my tibia.

And this is why I don't like standing up for long periods of time.

Rainy day procrastination...

First of all, wow.

I've gotten so many positive comments from people not even going through the process and it's absolutely amazed me. Thank you all so very much, your support is very much appreciated! Just had to say that before continuing...


THE FRAME
I said I'd go into more detail regarding the frame, so here we go. Now, there are a few different frames that are in use for leg lengthening, but I'll just be covering the one that I'm using.

Like I mentioned before, the frame that I've got on my leg is a Taylor Spatial Frame (TSF). It was 'invented' by Dr Charles Taylor, but it's based upon the same method as the more widely known Ilizarov Apparatus - "the theory of tensions". This just refers to the way the pins in the bones are connected to the framework, allowing a person to apply tension stress in order to regenerate soft tissue and bone in a fairly reliable manner. It was all based off the shaft bow horse harness, and the original frames were made out of bicycle parts. I won't go too much into Ilizarov - during your research, you'll probably come across Ilizarov's name many, many times. He's the guy who perfected limb lengthening in the Soviet Union (back in the day!), before it was taken to Italy and then the USA.

Left, front, right and back views
of my frame.

Here's some pictures of my TSF. My boyfriend likens the two black rings to mini Stargates and now that's all I can think of when I look at it. It's a good thing, it's good to be able to make light of not the greatest situation ever. So these two rings have six telescopic struts that can each be individually shortened or lengthened according to the need of the user. Because they can all be changed differently, it give you six different axes of movement, making it extremely able to manipulate bones in multiple directions. This is really handy for me, because of the curvature of my tibia. We're not only trying to stretch it, but we're also trying to straighten it out in the process. We do this very slowly, most of my struts get changed 1mm per day, but occasionally one, or even two of the struts have a 2mm change in a day.  These 2mm change days are not altogether fun, because there's more stretching in a 24 hour period, your leg feels much tighter than most other days. There is a general feeling of tightness as you go on, for obvious reasons. Apparently this is why I'm going to be having a rough time when it comes to the last week of stretching, according to Dr Astori. I can't believe I'm not even half way there yet, so the further we go and as the gap between the bone fragments increases, the more anxious I get. I guess we can only wait and see...

Each strut has measurements on them
so it's easy to lengthen accurately.

Each frame will be different for each person, depending on the size and shape of your leg (or whatever you're getting lengthened). But you get the basic idea. I'm pretty short regardless (152cms/5ft flat), so I've got short legs anyway. My frame is about 22.5cm in length from the bottom tibial pin up to the top black ring.

The frame itself is approximately AUD$15,000 - thank God for private health insurance! For a bit of an extra bling, the dressings that were originally around my pin sites after the surgery were lined with silver, but the hospital paid for those apparently. The silver acts like an anti-bacterial agent, for reliable infection control.

For more information on the frames, you can go here:
http://www.smith-nephew.com/us/professional/products/featured-products/taylor-spatial-frame/

They're a bit bulky, and you'll knock it on things occasionally. I felt really clumsy at first, because I kept doing that as I was getting used to it being there - but it doesn't hurt to gently knock. I wouldn't recommend going around bashing the crap out of it - but it can take it, and it won't leave you in pain in the slightest. I've even fallen over once, and rather than anywhere on my leg hurting, it was my backside that hurt the most from landing on the edge of the shower, bruised quite impressively. Speaking of showers...




SHOWERING/BATHING

Right, so for the first night, I didn't shower. Obviously, because I hadn't been allowed out of bed and was still out of my mind with drugs. I was able to shower the very next day though, with help taping a bag around my leg and I had help wrapping a towel around my head and being dried off as well (remember, it was two days before I could dry my own butt? My balance was horrible). The shower itself I was able to handle on my own, by having a chair placed in the shower. For the first week and a half, I would sit down in the shower. Both the hospital and the shower downstairs at home are the models that are mounted to the shower on an adjustable rail and the nozzles themselves are detachable from their holder. This comes in handy, and I'm glad I decided to move downstairs because the upstairs shower is permanently fixed to the wall.

As the muscles in my left leg slowly got used to being the primary weight bearer, I was able to actually stand in the shower and balance best I could through out the duration. This was highly preferable for me, because it turns out sitting down in the shower the entire time is a right pain in the posterior. I did this for a while with my crutches either just outside the door, or even once or twice I took my crutches in with me. I don't do that anymore, as we've since gotten a walker for me to put in the shower to use for my balance. As I mentioned before, I've actually fallen over while trying to come out of the shower - I put a crutch down on the edge of the bath mat, and the mat flew out from under me. I managed to twist my body well enough that I landed on my side with my upper body and my leg was facing up, so I landed on the back of the frame rather than the front and it didn't hurt my leg and none of the pins hit the ground, but my backside definitely ached for a few days. So just be careful with your crutches. Also with slippery floors. There's been a couple of close calls where I've put my crutch down on a slippery surface and it's come out from under me but managed to catch my balance in time not to stack it. Again.


So the picture is of how we have our shower set up for when I use it. We still have the chair in there for when my leg does get tired, but also have the walker as it provides a more stable support. That wasn't even my idea, I think I accidentally scared the living daylights out of my mum when I stacked it though, because she went out and bought it the very next day. It was about AUD$100 brand new.

I wore a bag around my frame for the first three and a half weeks, until I got the okay from Dr Astori to bathe without it. And like I've mentioned before - I was told no soap, just water. It helps soften the skin before cleaning, too, so it doesn't hurt as much as it did if the skin needs to be broken from the pins. I shower at night because that's the best time for us to clean my pin sites as well, and the pin sites need to be done straight after showering. And this was the worst part, as far as I'm concerned - because I had to bag my leg up, it meant no shaving my right leg for three and a half weeks! Gasp! The first night I was able to shower with no bag, I made damned sure to make that baby as smooth as possible, without getting *too* close to the pin sites so not to irritate or get any stray hairs in the wounds. Another tip I was given from one of the nurses at the hospital, was to spend some time going around my leg with an eyebrow trimmer, or something similar. It's all rather fiddly, but you do what you can to feel clean!

I change towels (I use two, one for my hair and one for my body) about once every four or five days, but I'm probably going to change that to every second day, just to be on the safe side. It's recommended that you change your towels once every three to five uses to avoid mildew or mould bacteria from growing inside your towel. When we wash the towels, we wash them like normal but also with a capful of  Canesten Hygiene Laundry Rinse, which has anti-fungal and anti-bacterial properties.

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.