Hi, my name is Morgan Elshaw, I’m 15 years old and this is my personal story……

How it all started……

In December 2017, I was diagnosed with Adolescent Idiopathic Scoliosis (AIS) which is a curvature of the spine. I hadn’t presented any symptoms apart from my right shoulder being higher than my left and over time my right shoulder blade became more prominent and clothes didn’t always fit me very well. Initially my mom took me to see a physiotherapist who told me there was nothing they could do and that I needed a hospital referral. After meeting my spinal consultant at Sheffield Children’s Hospital (SCH), I was told I had a 52 degree spinal curve and it was idiopathic meaning there was no reason for why I had it. AIS can occur in both teenage girls and boys but is more common in girls. Throughout 2018, I was monitored every few months but by November surgery was the only option because my curve had increased by 5 degrees. I was absolutely devastated, my ambition is a career in performing arts, especially musical theatre, and I knew that working towards my dream would have to stop for a while. However, my parents and I agreed it was the best option for the future and a date was set for June 2019.

The Unexpected……

In December 2018, I had an MRI scan and in March 2019, I was referred to a neurosurgeon because something had been identified on the MRI. I was told that I had Chiari 1 Malformation and needed decompression surgery before spinal fusion surgery. The neurosurgeon explained that the cerebellar tonsils at the base of my brain had extended into my spinal canal, restricting the flow of spinal fluid and 2cm would be removed from the bottom of my skull to allow the base of my brain to sit comfortably. It was a complete shock to us all, again I had not experienced any symptoms and this surgery would delay spinal fusion by 3 months so that I had time to recover. The date was arranged for 5th June.

From March onwards time flew, I was busy with studying and with my dancing even competing up to a few days before I was admitted to hospital. On arrival at the SCH Theatre Admissions, my parents and I had a meeting with the neurosurgeon and various other medical staff, I was then handed my gown to change into and it wasn’t long before I was taken to the anaesthetic room. The hardest part was leaving my parents. I cried so much but the anaesthetic soon started working and I fell asleep. I woke up on the ward and my recovery was reasonable despite some sickness, in fact I was only in hospital for 4 days and by 9th June I was home. However, due to cerebrospinal fluid leakage, I returned to hospital twice. The final time I was in theatre for a lumbar puncture and more stitches.

Overall, I had been in hospital a total of three weeks which we hadn’t expected. As this was the first time I had been in hospital, it all came as quite a shock. At home I recovered slowly, and gradually life settled down again although it was far from ‘normal’ for me as I was unable to carry on with all the performing arts classes I was used to.

Moving on……

In August, we had more hospital appointments with the neurosurgeon to ensure that the decompression surgery had been successful and a pre-op for the spinal fusion surgery. It was hard to believe from the x-rays that the curve of my spine was so pronounced. The consultant explained that he would be inserting two titanium rods and screws to fix the curve in the thoracic area (upper part) of my back and that it would never move again! As the consultant was aware of my career ambition, he would not be operating on the lower part of my spine as this would enable me to have some flexibility, although somewhat reduced. The date for spinal fusion was arranged for 1st October and I felt more anxious this time after the setbacks I had experienced with the first operation. On the morning of my operation I was given a pre-med to relax me, it took effect almost immediately. I can’t remember anything from that point onwards until I woke up afterwards and I was very emotional. I was in theatre for five and a half hours and around two hours in the anaesthetic room being prepared before surgery. My recovery was relatively straightforward and I followed the advice from the medical staff who looked after me. The following Saturday I felt so relieved to be allowed home.

Where I am now……

I am currently still recovering and had my eight week post-op review with my spinal consultant at the end of November. I saw the x-ray post-op and it is amazing as I now have two titanium rods and thirteen screws in my back and a 12” scar which is healing well. The curve in my spine was actually 65 degrees pre-op and now it is 21 degrees! I am still experiencing some pain in my shoulder blades and numbness in my back but I have been told that due to the nature of the surgery and the amount of pushing and pulling that was carried out this is to be expected. During the surgery the consultant lifted my rib cage slightly and spaced out my ribs a little too! I have grown by 2cm which means I am now 166cm tall. The imbalance in my shoulders has been corrected so I am almost symmetrical. Currently I can only undertake light physical activity so carrying a heavy school bag is not allowed. Unfortunately, I have been having headaches which I never suffered with prior to the decompression surgery, again the neurosurgeon has told me that these should settle in time.

I returned to school part-time in December and combining this with home study I am gradually increasing my hours so that I can return full-time, although some access arrangements have had to be made in school. I am continuing to work hard as I have my GCSE’s in the summer followed by my prom for which I am having a dress made and I am proud to show my spinal fusion scar. I have improved dramatically over the last few months and from now on it is onwards and upwards, as I start to return to dance and continue with my performing arts studies to achieve my dream. I have a physiotherapist to help with my pain and a dance rehabilitation specialist who I am working with as well.

To conclude……

My journey has been a very emotional one and it has taken a long time for me to feel able to speak about it but now I want to raise more awareness about Chiari 1 Malformation and Scoliosis. When I was diagnosed with Chiari 1 Malformation in particular, the support was minimal and I didn’t know anyone who had undergone both operations and wanted to pursue a career in the performing arts. I felt apprehensive and anxious; I had never been in hospital before and didn’t really know what to expect. I will always be grateful to everyone who has been involved in my journey, the hospital nurses and surgeons, my friends who kept in touch and visited me, my teachers both at school and dance and my parents who have and continue to support me.

Finally, it would mean a lot to me if my story was heard because I would really like to share my own personal journey and to reassure other teenages they can get through this, even though it seems like a long road ahead. My mom started a blog as soon as I went into hospital which gives further information and is aimed at giving some support to parents who may be in the same situation as ourselves. If anyone would like to read more the blog address is https://it-is-what-it-is.co.uk

Thank you for taking the time to read my story.

'Not perfect, just Morgan!' Xx

ABOUT THE CHARITIES......

ANN CONROY TRUST

This is the only UK wide charity specifically supporting research into Chiari Malformation and Syringomyelia. The research will bring significant benefits to patients. Raising funds to expand their research programmes is a top priority of the Trust. Their registered charity number is: 1165808.

SCOLIOSIS CAMPAIGN FUND

This is the joint fundraising arm of the Scoliosis Association (UK) (SAUK) and the British Scoliosis Research Foundation (BSRF). All proceeds from fundraising are split equally between the two charities. SAUK aims to provide advice, support and information to people with scoliosis and to raise awareness among health professionals and the general public. It is the only national support charity for scoliosis patients in the UK. BSRF is the only research charity that exists solely to promote research into the treatment of scoliosis and allied health conditions in the UK. Their registered charity numbers are: SAUK285290; BSRF803772.