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


8 thoughts on “Twists and Turns of a Scoliosis Life

  1. Lydia says:

    I have scoliosis as well and I’m going to try the massaging oils and I’ll ask to get a stand up desk because I’ve been watching operation ouch and you’re awesome! I don’t have metal rods and instead of making them longer I have operations so I’ve had 14 operations and I’m 11! You’re an inspiration so.. thank you! 😃

    Liked by 1 person

    • Hi, Lydia thank you for your message I’m so pleased you have been watching me on Operation Ouch. It was lots of fun filming it! I can’t believe you’ve had to have 14 Operations. How many operations do you have to have in a year? That must be really difficult for you , having scoliosis is not much fun is it? And it’s nice to have a message from someone who is having the same thing. Keep in touch , Emilia x


  2. Tracy says:

    Hello I saw u on operation ouch and thought u were amazing. Ive read your curvy on the inside and it gives me hope for my daughter.
    my daughter Amy is 32mths and was diagnosed with severe scoliosis at 11mths she has other problems too and is fed thru a tube up her nose as she has an unsafe swallow. Amy wears a brace for 20hrs a day to try and stop her curve progressing. Her last x-ray showed her Cobb angle was 59 degrees. I just wondered what your degree was in the photo when u were nearly 3.
    I see u went to Sheffield hospital to have your op, we go to evelina London to see spinal doc. Hope u are ok as been a long time since u posted.


  3. Jasmine says:

    Hi I’m Jasmine I’m twelve and also have scoliousis I got diagnosed this March and I have to have spinal fusion I love your hospital hacks and all your posts it’d be cool if we could get in touch ☺🌸

    Liked by 1 person

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