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

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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

Kindle

Dork Diaries

David Walliam Books

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

DVD palyer

Tablets

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

Nintendo 3DS

Nintendo Switch

Sony Psvita

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

Top Model Book

Emoji Activity Book

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

There’s No Place Like Home

Wednesday 17th August

Yesterday was definitely a long, long day for me. In the morning the pain nurses came to see me and said that it would be best to try and stop using my PCA button and move on the medicine instead. So that’s what I did.

I managed to get out of bed and have a shower which didn’t feel too bad at first!

But by the end my back had really begun to ache and so I felt like I really needed to lie down. The nurse removed the pressure dressing and put some clean dry dressings over my wounds.

Just having a shower really wore me out and I quickly needed to have some rest.

When I woke up I had a little visit from one of my best friends from school which was nice and we sat on my bed and watched movies on the hospital tv.

I also sat out and managed to do some of my activity books. This was good because the physio ladies had said that if I managed to sit out in a chair for an hour then they were happy for me to go home.

It took all day for my medicines to properly work and for me to manage sitting out for long enough but I did eventually manage it. I also had to go and have an X-ray to check that the rods looked ok before I went home too. I went down to X-ray in a wheelchair because it was quite a long walk, I had two X-rays – one from the front and one from the side. Everything looked ok, but we will get to find out how everything is doing again in 8 weeks time when I have to go back and see my dr.

Because I managed to do these two things the nurses said that I could go home and they gave us the medicines to take home with me.

I finally got home last night at about 8 O’clock. I was very tired and in quite a lot of pain because of the journey but felt amazing to be back!

Emilia x

Operation MAGEC Rods 2017

MONDAY 14th AUGUST

Well Monday 14th August was a very big day for me! I came into hospital to have my broken MAGEC rod replaced and a second rod put into the left side of my back.

I woke up really early and drove to the hospital with my mum and dad, I hadn’t eaten anything since the night before and wasn’t allowed any breakfast or even a drink before I got to the hospital.

I was admitted to the Theatre Admissions unit at 7:30am where they checked my height and weight, my temperature, heart rate and blood pressure. I had chance to see the Drs and the anaesthetist before my operation. They also allowed me to drink water, while ch was great because I was really thirsty.

The nurses gave me some cream on my hands – magic cream- to make the skin numb for when they had to give me a needle.

This was to stop it from hurting and I think it really does work, Magic! Then I was given a Theatre gown to wear so I got changed right away. When it was getting close for me to go down to the Theatre, the nurses gave me some medicine to relax me and help make me feel less nervous. It was funny because it made me feel quite giggly – not sleepy!

When I got down into Theatre the nurses gave me a Where’s Wally book to look at while they got my medicines ready, which helped take my mind off what they were doing. They put a needle in my hand and then an oxygen mask on my face. Then they told me that the next thing they gave me would send me to sleep. It worked very quickly because I don’t really remember much else until I was woken up in recovery after my operation.

When I woke up I was given a button to press. This is called a PCA – patient controlled analgesia. It allows me to give myself the pain medicine as I needed it. Which to begin with has been all the time. It really helps me feel more comfortable.

I went straight to the ward after recovery and that is where I still am now. It’s not too busy right now so that’s good.

My doctor came to see mum and dad to let them know that the operation had gone well. I now have two new MAGEC rods and they should continue to work when we start to lengthen them in a few months time.

I have been having hourly checks since my operation to check that I don’t have any nerve damage. The nurses come and test how well my arms, hands, legs and feet work. This also means that they wake me up – every hour, all night long!!!

TUESDAY 15th AUGUST

Well I felt very tired yesterday, but the ward got quite busy and noisy so I didn’t sleep much.

I did get to have some food though which was lovely because My tummy was really rumbling by then!

My PCA really helped me to move about and in fact I managed to quite a lot of activity.

The physiotherapist ladies came to see
me in the morning to help me get out of bed. They helped me to sit on the edge, but I felt like I wanted to stand up. They were amazed and asked me if I wanted to try and walk. I couldn’t wait to try that because I was so bored just sitting in bed!

I had a little walk, just a few meters away and then back to my bed. It didn’t feel too bad, I was a bit achy and my back felt sort of heavy. I then sat out in my chair for ten minutes, it was so nice not to be lying down.

I carried on moving from chair to bed as I needed to be comfy and using my PCA. Then in the afternoon the physio ladies came back to try a bit more moving. I had a little walk off the ward and down some stairs. I felt ok, my back felt heavy and ached a bit afterwards, but it felt good to get moving.

I think that I’m moving around quicker this time than after my last operation. I have been using my PCA quite a lot though!

The worst thing about being in hospital is being so bored, I really am already fed up of sitting still all the time. I have lots of things to do like games, colouring and dvd’s but it’s hard to anything for very long before I need to lie down.

I have a really BIG dressing on my back, the nurses have called it a pressure dressing. It feels very strange and sort of heavy but will come off soon hopefully.

Operation Update!

Welcome back! I’m currently on my holiday, but thought I’d take the time to squeeze in this update.  I know that there are some of you still wondering why I am having a operation but first of all I thought I’d give you some back ground information.

If you have read “Operation MAGEC Rod” post then you will know that I have one growth rod in my back and I go to have this lengthened every three months . At my last appointment in June I told my Dr that I had been having a lot more pain and that the lumps at the bottom of my back seemed to be getting bigger. It was these lumps that have been giving me so much trouble because they are really sensitive and hurt to lean back on or lie on in bed!

Because of this he did a close up X-ray so that he could see the screws and rod better than the normal X-ray. It was after this that we discovered the metal rod in my back has broken, in quite an unexpected way. It is very unusual for the metal to break and more common for the magnetic moving bit to break. Because of this I have had to have another CT scan so that they can have an even better look at what has happened.

I have to go back again at the beginning of August but we do now know that the broken rod cannot be fixed and needs to be replaced, then also My Dr will try and put in a second rod on my left side.  MAGEC rods are normally put in in twos but this couldn’t be done last time because I was just too small.

So now I have to wait for the operation, but if it helps and makes things feel better again then I don’t mind. My back has been very painful for a while now and Inahve to have lots of regular pain killers to help me. Even here on holiday, in fact I had to have a letter from my doctor to take my medicines through the airport there’s so much of it!!

Whats happened is a complete change of plan as I wasn’t meant to have another operation to take this rod out for another two years. But I am beginning to learn that nothing is straight forward with scoliosis (straight – ha ha!).

Below is a quick video version of this update plus a few shout outs and some photos of my X-rays and my back. Only look at those though if you’re not too squeamish! It does look quite painful, which it is but not as bad as it looks!

Thanks for reading – I’ll post again soon,

Emilia x

My MAGEC Rod when it went in 2015

My MAGEC Rod June 2017

From the back

The rod protruding – from the side

Curvy Goes Live!

We’ll launch day is here!  I feel good and excited that I can now share my new blog with you all.  I really hope you like it.

If you are wondering why I’m having another operation, keep a close eye on my blog because I’ll be updating soon.

It’s been a tough few months with pain but hopefully things will be better after August. That’s why I’m ok with having another surgery. I’m a bit fed up because it’s in the school holidays again but mum says I’ll probably have some time off school this time – yes!!!

Thanks for reading!
Emilia x