Twists and Turns of a Scoliosis Life

Hello Everyone!

I just wanted to explain why Ive not been posting for a while and talk about the downsides of having Scoliosis. These past few months I was suddenly overcome with a lot of pain, so I had to take a break from my blog for a while.

It all started in around about August, and I was noticing a very faint noise that was coming from my back, it sounded kind of like a door creaking open { that’s how I would describe it} . It then started to get louder, I did tell my parents and they said they would keep an eye on it. Weeks later,  I then actually start to feel it move and suddenly I was in a lot of pain { as I said at the start}. My parents were very worried at this point , and in the end they had ring the spinal team to check that what was happening was okay.Because this was so different from how I had been feeling they felt that I needed to be seen to check everything was okay.

They did an x-ray to check the screws and it all looked okay, the Doctor was just about to reassure us and send me home, when I mentioned to him that I couldn’t sleep very well because the sound it makes woke me up.

He was quite alarmed at this and then decided to repeat the CT scan to double check the MAGEC rods and screws, because the x-ray is not the clearest picture.

I had the CT scan a week later and then at the next routine lengthening appointment we had a look at it together and could see that everything was where it was meant to be and nothing was broken.

It was a huge relief to know that it wasn’t broken, because I had been very worried about that happening to me again.  The down side was that there was nothing they could really do about tn=he moving and the increased pain.  To sum it up really I would just have to learn to deal with the increased pain.

Although, I did get lots of pain killers to help ease it for me a bit, this was quite a difficult time for me.  I just felt like everyday was hard work and going to school in September was horrible because all I wanted to do was lie down and rest.  However, I think that overtime I have just got used to the pain and now I don’t  really notice it very often!

The most useful thing I can share from this experience is that people with scoliosis, especially those with metal implants, will have to cope with pain all the time and whether you can feel it move {any metal implants\ MAGEC Rods} or if you can hear them, or if it makes your muscles tight – one tip is to tell those around you that your having a bad day.   People can’t read your mind, so you do have to let them know.  When I finally began to do this I had so much support at home, with my friends and at school.

Anyway, I hope those tips helped you {if you have scoliosis}, and I also hope I can update you on more things.

Here’s the very small clip of my back when it was creaking – sorry about the unsteady video!

Emilia x

Action Activities!

In the past I have mentioned that I can’t really take in part in many activities because of the risk of damaging my MAGEC rods.

I can most definitely not do:

  • Running (like fun runs or cross country)
  • Trampolining
  • Climbing
  • Horse Riding
  • Gymnastics or Dancing (I’m not flexible enough through my back)
  • and loads of other fun things!

So this summer I did try to take part in some things that are fun activities that weren’t a probe.

I took part in some tennis lessons with my friends and also did a bit of archery.  They were both loads of fun and I didn’t hurt my back doing them.

I can’t wait to do them again next year when the weahter gets warmer.

Emilia x

Living with the MAGEC in Me

Hey everyone!

I’ve not posted in a while, everything’s been going well with my MAGEC rods and there’s no drama right now!  I’ve had some lovely messages from people visiting my blog all around the world, thank you so much for getting in touch and I’m so happy that you like my blog or find it helpful.

Recently I was asked to blog about how my back and having the MAGEC rods affects me in my day to day life.  I thought that was a great idea and have done a video blog about some of the things I have to consider when living with scoliosis and lengthening rods.  Here’s my top 5 things I felt were the things I have to consider…

1: Lifting Things

I can lift bags and other things but I try not to overload them or make them heavy.   For example my school bag, I try to keep this light and I wear the straps very loose so that it doesn’t rub or bump on the bottom of my back.

If I want to pick something up I always bend at the knees and try to keep my back straight so that it doesn’t hurt.  But I think if something is really heavy then you can always ask someone else to carry it for you.  That’s what I do, even in school for example, one of my class mates will carry my chair to assembly.

2: Cold Weather

For some reason the most discomfort that I feel on my back is at times when the weather is very cold. So I always tend to find the winter time much more difficult and suffer more back ache and tension. Because of this I tend to stay indoors at play time at school when the days are cold and wet, or I make sure I’m wrapped up really well so the cold can’t get to my back.  The other thing I do is use heat packs that you can stick to your clothing so that my back stays cosy warm when I have to be out in the cold.

3: Sitting for a Long Time

This tends to affect me the most at school, because of sitting at the desk to do class work. I have a stand desk which allows me to change from sitting and doing work to standing and doing work.  That way I can stretch out my back and relieve some of the pressure and muscle ach I get when I sit still.  I also find it difficult to sit on the floor at school for such things as carpet time or assembly, it just really hurts and I get lots of low back ache.  Because of this I am allowed to sit on a normal chair, which I don’t always like because I feel like I’m being different or stand out but if it’s going to be for more than a few minutes then I have to do this instead.

The other times I might find this a problem is travelling in the car.  If I know the journey is going to be longer than about half an hour then I have to make sure I take cushions to prop me up or lean on and Mum and Dad will also make sure we have a stop so I can have a stretch and walk around.

4: Avoid Activities

Because I have the MAGEC rod implants, and because I have a history of having one fail inside of me and having that replaced,  I have to take extra care to avoid activities that cause a shock through the spine.  Such things as running for long periods, horse riding or trampolining – definitely no trampolining!

5: Other Things

As well as these examples I have to be careful with climbing on things and doing anything where there is a risk I could fall back onto my back.  I like to climb when we go to a park but right now I wouldn’t climb too high and only if I was really confident I wouldn’t fall.

Sometimes I get quite fed up about this because I love being active and before my last MAGEC rod operation I was getting very good at long distance running but have had to give to up for now, and I would love to ride a horse but it would be too risky for me right now.

However there are lots to other things I can do with my time! My favourite physical activity is swimming.  I can do this without any pain during or even after. I’m totally free when I’m in the water and I love to swim beneath the surface, holding my breath and swimming on the bottom of the pool.  At school this year I learnt how play Hockey outside and found that this was a lot of fun and didn’t cause me any back ache – I was already very used to bending at the knees when I wanted to hit the hockey ball!

So I hope that this has been useful if you have MAGEC rods or scoliosis like me.  Please do get in touch if there are things you would like to know.  I love getting suggestions or questions and I will always try to answer them.

Thanks for reading!

Emilia x

Taller Not Smaller!

Hi everyone!

Very sorry for not posting in quite a while but to be honest things have been going great with my back and I’m in a lot less pain now I’ve recovered from my operation.

So I thought it would be a good idea to show you a video of what happens when I go to have my MAGEC rods lengthened.  I have to go to have this done every three months as well as x-rays and body surface scanning to track the changes in my curves and monitor my growth.

The lengthening of the rods only takes a couple of minutes and doesn’t hurt, I sometimes think it tickles a bit but that is all! Each time I go the rods are made longer by 3mm, which over a couple of years means they can grow about 4cm.  The rods keep the curve from becoming any worse but allow my back to grow as I do and because this can be done from the outside, I don’t have to have an operation each time.  How great is that?

Below is a video of a recent lengthening and in it you can see how simple it is as I lie down for my doctor, Mr Breakwell, to make my rods longer with the special machine.

Thanks for watching,

Emilia x

MAGEC Trick

Hi everyone!

I made a quick video of a little trick I can do now I have my rods. When I go to have them lengthened they have to first find the magnets to know where to put the computer. I thought I’d show you how that bit works.

Hope you enjoyed. Thanks for watching!

Emilia x

Top Tips to Cure Hospital Boredom

For my operation I had to stay very still and spend quite a lot of time lying and down this was great because it gave me chance to do some of my favourite things.  Without these things I would have been very bored. So I thought I’d share with you some of the activities I took with me to hospital, just incase you need to go yourself and need some help thinking of what to take!

A Kindle or your Favourite Book

One of the first things I took was my kindle, this was actually a gift for my hospital stay because my Mamma and Granddad know how much I love to read.  You can use a book but if you have a kindle you can use that.  I couldn’t read because the pain medicine made my eyes funny and I couldn’t focus on the words, but the next day  my mum read to me instead.  A book is good for anytime you want to read and you only have to read a few pages, or whatever you feel up to.  I really love the Dork Diaries series or anything by David Walliams or Roald Dhal.

An Mini DVD Player, iPad or Tablet

The next one is an iPad or tablet which you can use to either play games on or watch a movie.  I have Netflix and Now Tv and was able to watch a few things on that or if you have a mini dvd player and some dvd’s, that could be a good idea.  I felt really tired a lot of the time and watching a little bit of a film was a good way to keep me occupied.  There was a tv by the bed but it didn’t work very well but they have lots of films loaded onto them and if they work properly are really good!

Nintendo DS or a different Small Games Console

I took my DS with me and a few games, I did use it a bit but I preferred to watch a dvd or iPad.  I think if I had been in hospital for longer then I would have used it more.  So I think this would be good idea if you know you have a long time to stay in hospital.

Activity or Sticker Books

I think that I would have been very bored indeed if I hadn’t taken along my activity books.  When I was starting to feel a bit better and wanted to get out of bed, I couldn’t really do much more than sit out in the chair, and then I could only do a little bit at a time.  I found if I did my activity books then I could sit for longer without getting bored, I really enjoyed doing them in hospital and then at home after I had been discharged.

My favourite ones are the Top Model books, I got them on my holiday in Spain but you can also get them from places like Smyths and Toys R Us.  Any activity book would do, or sticker books – they are great too.

A Diary or a Notepad

I took my Smiggle lockable diary, so I could write about my hospital stay. I think it’s a good idea because you can look back at what you wrote and see how you were feeling at the time. If you don’t have a diary a notepad would do, even if you don’t want to keep a diary you can do some doodles or jot down ideas and thoughts.

Well that’s my top tips to cure your hospital boredom, of course they are just my suggestions and there might be lots of other things that you enjoy doing.  If there is I think the best thing to do is take them with you and see how you feel.

Thanks for reading,

Emilia x

Recovery? Easy Peasy!

I had my operation over four weeks ago now and I’m really starting to feel so much better.  I think the first two weeks were the most painful and I did have to have lots of medicines to help me.  While I was recovering I spent a lot of time lying down and watching movies – I had a summer movie marathon!

I only have to take my medicines when I need them now or at night times to help me be comfortable at bed time. I think the worst thing has been not being able to do too much in my school holidays.  I have drove my mum and dad a bit crazy because I have been quite bored sometimes (Take a look at my Vlog for curing boredom), but I don’t mind being lazy really!

My family think that I look much straighter, and maybe a bit taller too.  I feel like I can sit much straighter and I don’t have any bumps at the bottom of my back anymore because my broken rod has been fixed so that is much better because I don’t knock them and I can finally lean back on chairs or lie down on my back without it hurting too much.  My scars have healed well and aren’t sore anymore, just really itchy!

I have had lots of cards and gifts from family and friends so I would like to say a big thank you to everyone, it was really nice to have treats and it did cheer me up lots.  Thank you to everyone that visited me while I was in hospital or at home, I really enjoyed your visits.

My friend Maja came to visit me at hospital

My Nannie!

My friend Lola came to see me when I got home from Hospital

Two weeks ago I went back to the hospital because it was the MAGEC rod lengthening clinic and my doctor said if I felt up to it I could have my rods lengthened, so I went back and had them lengthened.  I want to film it properly so you can all see what happens when I have this done, so I will do – but you will ave to wait until December!

Back at the clinic at Sheffield Children’s Hospital

Having my x-ray done

My x-rays show that the rods look good and they are now a few millimetres longer than three weeks ago, which means that I am taller!

I went back to school this week, it was great back to normal and seen my best friend at school. It’s hasn’t been too bad and I’ve only had to have pain killers a few times.

Watch out for my post coming soon about my ideas for things to do in hospital.

Thanks for reading!

Emilia x