Wednesday, 30 November 2016

My Scoliosis journey


I can remember it as if it happened yesterday. Flashback 9 years, I was 13, standing in front of my mirror. I had always a horrible ache in my back but I just presumed it was because my Granny's armchairs or sitting up in my bed were uncomfortable. But looking back now I know it wasn't that. Back to standing in front of my mirror, I remember turning around looking at my back, I froze. Next thing I remember is screaming crying running downstairs to mom asking if she could see it. She froze. That day my life changed forever. I diagnosed myself with Scoliosis, a deformity in the spine and after getting my first X-ray we discovered I had a 60 degree curve. When I saw my spine for the first time I broke down, I couldn't believe how curved I was and never knew it.

I was in first year of Secondary School when I found out. All of my confidence was slashed. I felt like a monster. I felt like the humpback of Notre Dame. All of a sudden I became fixated on everybody's backs. I would cry every night wishing my spine would be beautiful and straight and question why I was cursed with such a horrid condition. I couldn't wear tight clothes for fear anybody would see my back or worse comment on it. I hated going to discos because all the girls could show off their backs, not me I tried to hide mine as much as possible. Yet nobody knew about my condition except for about 3 people. I was ashamed of it.

Every few months I would go to Dublin for appointments and X-rays to see if my curve had progressed. I was on the list for surgery for 2 years. We fought so hard to get my operation, to this day waiting lists in Ireland are atrocious and children are waiting years for a correction, meanwhile curving even more. That's what happened to me. I remember going for an X-ray and my surgeon told me that I had stopped growing and my curve would progress 1 degree a year. I was so happy to hear that news because 60 degrees is a lot and I still didn't have a date for my operation.

Three months later I had an X-ray again, I was 84 degrees. I had progressed 14 degrees in only three months. I was desperate, my family was desperate. My mother went to TD's and even to Mary Harney (our old minister for health) to get my operation. I'll never forget the pain I experienced. the breathing difficulties I had as my spine was slowly crushing my lungs, not being able to stand up for no longer than 5 minutes. I was 14 at this stage and I felt like an invalid. Summer 2009 came around and I had just turned 15, I was in the Gaeltacht, my family came to visit me one Sunday and that's when I got the news. I was going to get my operation on the 20th July 2009. I was so happy but unbelievably nervous, the thought I'll never be able to bend my spine again scared me but it was the only option for me as I was so severely curved. Two days after coming home from the Gaeltacht, my family and I made our way to Dublin to check me into hospital. All I kept thinking of is how tall I was going to be after (Yes you grow a few inches after a scoliosis operation as they elongate the spine and bolt two titanium rods to hold it straight while over time it fuses together).

The last thing I remember before my operation was taking "happy medicine" to make me loopy so I wouldn't be scared going to the theatre. I was wheeled into the elevator and from there it's all blank. I remember waking up seeing shadows and a strange X-ray, little did I know at the time it was my back. I was in ICU so dosed out of it that I can't remember much. My operation lasted 5 and a half hours leaving 14 of my vertebrae fused and only 2 free at the bottom. When I was finally back to myself I remember feeling like every muscle in my body had been stretched so much and I remember feeling so straight as if there was a plank of wood in my back. The most strangest sensation I had ever felt. I couldn't walk after my operation. I had to slowly learn again. It was hard. Sleeping was non existent for those 12 days in hospital. My mother stayed with me almost every night and my father some nights too. After 1 year I began to feel myself again. Of course I was still scared to tell anyone about my operation. I still never wore low cut tops for fear anybody saw my scar. I never accepted it. I always thought it was a curse.




I recovered very well but I used to get a small pain in my lower back. I went for rare checkups but I was told it was normal. This pain would come about twice a year and every year more frequent. Other than this small pain (I thought was nerve pain) I was very good. I feel like I never had an operation. Yes I have to make different movements than others as I can't bend my spine. But I was feeling great. I even began accepting my condition and being open about it if anybody ever asked.

I'm seven years post op. If you follow me regularly you will know I spent a year in Italy on Erasmus. Last Christmas I came home and I had this terrible 'nerve' pain again. My doctor told me it was sciatica. I was happy I got a diagnosis and pain medication but annoyed that I was stuck with this pain. The pain went as it usually would, except this time coming back more frequent. I began to get very worried as I thought the pressure from the rods was causing degeneration on my free vertebrae and discs. Last July my life changed again. I experienced the worst pain I ever felt in my life. It was like an electric bolt striking my lower back. I screamed and froze into a locked position on my bed. My boyfriend Davide was there and he helped my body relax and out of this locked position. I managed to sit up and when I stood up I felt the pain again and my legs fell from under me. I collapsed from the pain.This is when I knew it was something more then sciatica. I came home from Italy in August and I went to A&E with this pain. The doctors couldn't help me because they didn't have the authority to take over from my Surgeon. The day after I was on my way to Dublin to meet my surgeon. He analysed me and told me it's not sciatica. I got an X-ray but nothing showed and luckily there was no degeneration. He sent me home to get an MRI scan and a CT scan.

Last month I went back up to Dublin for the results. He was right it wasn't sciatica. My surgery 7 years ago didn't go according to plan. The final two vertebrae never fused so the screw bolted into my spine is moving inside of it causing severe pain. It was like sitting in Crumlin all over again looking at my first X-ray. I broke down crying knowing I need another operation.

Scoliosis is physically and mentally draining. In the last few months I've had some very tough days not being able to walk and dosing myself on painkillers so I can go to college. But I wont let it stop me. I will get this operation and I will continue fighting. I love my scar and I know I will love my new scar. I have no problem showing it anymore, in fact I'm proud of my scar. It shows the strength I have to overcome this condition.

This is my story and I want to help any other scoliosis warriors out there. I understand the pain you go through but you have to realise just how strong you really are. Yes there are still days where I wish I could bend my back like loads of people take for granted but I was chosen to be like this and I'm happy. I want to show you that even with a medical condition you can still be beautiful. You are all beautiful. I want to take you with me on this journey and I will keep you all updated on what is to come. If you have a scoliosis story to share I would love to hear it. I want to empower the scoliosis community.

Bent, Not Broken.
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5 comments

  1. Wow how verybrave you were and are. I hand on my game art think the photo of your back is beautiful and loved reading your story xx Siobhan

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    1. Thank you so much darling. Your words mean so much to me <3 Thank you for commenting! <3 x

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  2. Hiya,
    I've just found your blog. I had my scoliosis spinal fusion just over 6 months ago and I'm doing great. I really hope everything works out for you scoliosis is the worst, I wish you all the best
    Sadie xx

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    1. Thank you so so much. So happy to hear you are doing great! Never hesitate to contact me re scoliosis :D x

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  3. Thankyou I recently made my own blog regarding scoliosis and beauty it's www.lookingback-sadierawson.blogspot.co.uk if you would like to have a look no worries if not

    Best wishes Sadie xoxo

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