Continued from Part 1...

In l998 I was back into a TLSO brace 23 hours a day. I cried the first time Mum put the brace on me. I found the last round of bracing to be extremely difficult and very different to that of my childhood. For one thing I’d tasted that illusive ‘freedom’. Also looking back I was very angry at a lot of people and deep down it was known that we’d run out of time, the ditch effort was useless. I knew the brace was doing ‘squat all’ and that it was simply making me sweaty and gross and upset. It was very much a ‘last ditch’ brace, imagine a providence bending brace (minus the extra bit down over one thigh) but worn during the day and you’ll have the general idea of what it looked like. Really it should never have been made, they were trying to achieve the absolute impossible, and the brace left many lasting odysseys on my body (NB my Teddy Bear wears it today…..for all it’s evil’s I just can’t bear to throw it away……it was a brace that to my knowledge was never made again).

However I was compliant about the brace and wore the brace 23/7 up until the week before I had surgery. You may be asking yourself ‘why?’ Well it was a number of things….I had a very good relationship with my surgeon and trusted and respected him immensely. I also passively accepted wearing the brace because I knew you always had to hope and ultimately they (my surgeon, the orthotist, my parents) were just trying to do the best for me.

As you’ve probably realised we did run out of time; I had very stiff curves that were continuing to increase and showed no signs of stopping. The decision for surgery was made………not so much to correct (that wasn’t possible with the stiffness of my spine) but to hold what was there whilst it was still at ‘reasonable’ degrees of curvature. I underwent Posterior Spinal Fusion Surgery on the 23rd November 1999 and was fused from T2 to T11 (they were going to do A/P and more vertebrae levels, but for the amount of correction they were going to get (essentially not much), it simply wasn’t worth it). They thought they were only going to ‘hold’ but actually managed a couple of degrees of correction, the curves sit at the mid to high sixties and low sixties to high fifties respectively. Even though some correction is the ultimate goal, at least it was not going to get worse.

To undergo Spinal Fusion Surgery at 13 is often considered to be a bit ‘early’ in terms of age, maturity etc. However there were many reasons why the decision was made t do it at that time. And as Mum says it was the hardest decision they ever had to make. One of the biggest factors was that my surgeon was getting close to retirement age. And to put it simply I (and my parents) wanted him to do the surgery and there was no way in a billion years that I would have let anyone else do the surgery. If he had retired or died it would have taken a lot of convincing and many years to trust anyone else……and quite honestly I couldn’t and wouldn’t have. There was also no benefit to gain curvature wise by waiting and also the very real risk if we waited too long the curvature would get too high, and I’d have a fused curve that was high plus the extra problems with big curves such as squished lungs, squished organs etc. They’d also worked out I was nearing the end of my growth and it was a good time school wise.

I asked Mum one day how much was my surgery, and she said it was ‘bout 8000 (Australian dollars all up). My parents had started in the Public Health System and with the knowledge that it was going to be a long journey continued through this system because it would be cheaper. It was also easier in many ways in getting my brace made, orthotics made etc. However my surgery was done as a private patient (by choice of my parents) and I continued to see him in his private rooms up until the end of the year I was 17. This decision (to go private) was made for many reasons. One was so I would not be ‘stapled’ (have a staple scar, not quite as nice as dissolvable stitches); as if I had been done it the public system I would most likely have (save time and theatre costs). I also went in as a private patient, because it meant I gained longer follow up care…..in the public system you’re not seen after 1 year post op.

My surgeon, being the lovely and ethical person he is does not put his fee on top of the surgery costs. Yes there was the fee for the surgery, but it wasn’t the ‘surgeon’s fee’. There was a surgeon assisting him, but we didn’t get his bill. My surgeon doesn’t believe in putting his surgeon’s fee on top of the other fees for children’s surgery when they are a private patient. Most of the 8000 my parents got back from the Health Insurance People.

You know, Scoliosis has some interesting perks to it and you do learn lots of interesting stuff. A brace especially brings extra ‘perks’ (except curve correction/maintaining of course) that most people don’t think about (or don’t quite look at it that way). You end up with a fantastic hourglass figure that would make many jealous and that many spend thousands on weight loss programs trying to achieve; you often set off metal detectors and get to go shopping for brace clothes and often spend longer……..and well I like shopping.

Kids in braces also grow up a lot, because they have to come to a form of acceptance (total or passive) about the obstacle that they have hit in their lives and they have to work out how to ‘deal’ with it. They have to accept that they have to wear a brace that may look gross, make them feel sweaty and restrict the clothes that they wear. They have to accept that they often won’t like it all. And they also have to work out how to maintain a positive and happy and not sit in a corner and cry ‘poor me’ attitude. And they have to manage people’s reactions which are too often ‘poor you that’s horrible’

You also become more confident because you become very original in coming up with ‘quick witty responses’ to what’s that funny thing under your shirt. As well as learn to ignore the stares you often get from curious people and very much often the I teasing.

I can never fully ‘let go’ of my scoliosis journey or fully ‘move on’, not because I resent any of the journey, but because it was such a humongous part of my life, and with something that big, it’s simply too hard to give it away. Ironically enough my eventual aspirations, after I complete Nursing and spend some time working as a RN is to go back and become a Prosthetist an Orthotist. I think I’d be extremely effective in patient relations, ‘cause when they say ‘you don’t understand what it’s like’ I can say yes I can. I know the brace will be difficult but this is why you have to wear it. From my many hours of observing parents in the waiting rooms I think I’d also be good with the parents.

A lot of the stuff I know now and learnt along the way the Docs or orthotists simply don’t tell you, ‘cause they haven’t experienced what it is for themselves. I also picked up a lot of stuff in the waiting rooms by observing other people and how they were dealing with it. As Mum puts it we learnt much of it (how to deal with Scoli) simply by chance or simply stumbling along the way, working it out as we went along, making it up as we went as mum says ‘we just did best that we knew how and did what we could’.

The things we learnt were strange and wonderful. And I was never treated any differently from my sister which was great to. If any of the things I pass on to others are helpful and means that someone doesn’t have to ‘stumble’ or wonder how to do something, then I’m more than grateful to ‘pass it on’; I firmly believe you learnt the best ‘stuff’ about an experience/thing from a person whose experienced it for themselves.

Quite surprisingly, some may say, I don’t particularly have any other serious medical ‘issues’, I’ve got a couple of ‘extra’s to most people’s Idiopathic Scoli., but except for that I’m just the girl with the crooked back, whose body is dodgy to sugar thanks to a sleepy pancreas, but except for that I’m as normal as ‘normal’ can be.

My feet came from my Scoli, that the crookedness in my back started a chain reaction, it put my hips out, rolled my knees in and basically ‘collapse’ the arches in my feet. So I’ve worn orthotics ever since I could wear shoes. My Asthma comes from as much the Scoli (how the spine sits, basically one lung’s quite squished) as simply the Asthma on its own.

My scoliosis has left some lasting odysseys, but I have no major problems from it; it’s still at ‘high’ degrees of curvature…….but at least it can’t get any worse. I have a dodgy right side, because one of my ribs is sitting under my collarbone (it got this way from the last back brace, it made my shoulders uneven…..before they were straight). I have some Sciatica in my legs and degeneration of the discs below my fusion is beginning to occur. However it doesn’t stop me doing anything, I see it as simply that’s me, and how I am…….it’s not worth energy wallowing in it , too much to do first in life.. My back complains occasionally from overwork (whose doesn’t), and I use an ergonomic chair and writing board for exams. However with regular massage and physiotherapy exercises for ‘tune ups’ everything stays in pretty good shape. I don’t know where I’d be today without all the work from my Physio…..thanks Mark.

Blame and hatred can be a powerful thing and can quite easily consume a person’s existence and quality of life. In the time just before surgery and for quite awhile after I was consumed with thoughts of ‘why me?’, and those of anger, bitterness and depression (it was a contributor towards clinical depression, however it was not the ‘sole cause’, the clinical depression was compounded by ‘normal teenage stuff’ as well as bullying on non scoliosis related stuff).

I spent many hours before and after surgery considering ‘why me’, what did I do to deserve it and that it simply wasn’t fair. Looking back, the largest sources of my feelings were from the debacle and politics in the health system that I was caught up in before my operation. Compounded by, like any kid facing scoliosis surgery, I was absolutely scared whitless about the ‘what ifs’. After the surgery I was also very frustrated; frustrated at myself, frustrated at teachers who tried to mollycoddle me and saw me as delicate and couldn’t do anything. And also those around me who didn’t understand, couldn’t work out why I couldn’t do stuff and yelled that I was that ‘weird freak’ who didn’t talk to anyone and had no friends.

I also held much anger and frustration towards my surgeon and my parents. With the knowledge to hand today I knew that he’d put me in not the best brace for my curves (it should have been a Milwaukee but over the years my surgeon refused point blank…….he thought the psychological and structural----i.e. towards teeth was not worth the effects and gains from the brace), I questioned whether he had done everything possible and I was frustrated at the continual restrictions he was placing upon me. I also wondered if my parents had really done all possible, and questioned the surgeon and explored options enough. I left each review appointment in tears; I hated my surgeon during that time with a passion.

What did it take, may you ask, for me to refind my great attitude and accept who I was. A school change, psych help and basically time, and a good slap over the head from my best mate. And me working out me with a lot of thinking and private cries. I eventually realised, stuff everyone (so to speak) I can do anything I put my mind to, and if I can’t do it, work out a way around it. And that if people didn’t accept me, for who I was, than that was their problem. I became happy about who I and what my place was in the world. My intellect and social ‘smartness’ seems a lot older than most people my age, which makes it a challenge sometime to relate to people my own age, but you get that. :)

I left my very last review appointment with my surgeon in tears. But they were tears for a different reason. I knew I was going to miss my surgeon dearly, ‘cause he really did mean so much to me and had played a huge role in my life.

Am I glad? Do I hold any anger towards my surgeon or my parents. Yes I am glad the surgery was done…..I can’t begin to imagine how my back would be today if surgery wasn’t done. And I long ago let go of the anger and frustration I held. It wasn’t healthy for myself or others to hold onto it……holding onto frustrations achieves nothing.

Ultimately all my parents and my surgeon wanted was the best for me, and they did explore all possibilities and avenues that were available to them; I just have to think about the sacrifices they made over the years to remind me of that, the opportunities they tried to give me and that my Dad loved me so much he made (out of his own pocket) a back brace bed to try and get one made for me.

Whilst my life has had many twists and turns and my scoliosis experience is a little different from the norm I don’t feel that my childhood or life was ‘jeoparordised’ or I missed out on anything from having Scoliosis. The Scoliosis just was (and is) a part of what makes me, me. I don’t let the rods stop me from doing anything, my favourite catchphrase is “Yes I can do it (even if it’s on the ‘banned’ list) just watch me” I figure if I break my back or my neck, at least I did it doing something fun, and my life aim is to try everything at least once……..when I get to 100 I want to sit on the porch in my rocker and have no regrets. I do anything I want to do, and beat my own path through the world. I fence, I swim, I dance Ballet……..just happen to do it all with rods in my spine.

So there we are…….the infantile idiopathic baby who’s all grown up. ’bout time for another cup of tea and a biscuit. Hope you enjoyed my journey; I enjoyed sharing it with you.

You can talk to Rowena on the SpineKIDS message boards.

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