Laura's Story

Laura CampbellMy name is Laura.  I have undergone scoliosis surgery under the care of Mr. Ahmed and the Stoke-on-Trent Spinal Service. I am also a volunteer regional representative for the Scoliosis Association UK (SAUK). I support scoliosis patients and their families locally by giving advice based on my own experiences, by arranging informal get-togethers and by putting patients in contact with others with similar medical problems to themselves.

I'm twenty-nine years old now and I was diagnosed with scoliosis when I was thirteen. I also have Ehlers Danlos Syndrome.  For my family and me the diagnosis was a shock and I still remember how frightened I felt sitting in the consulting room.  Having never heard of scoliosis, it was a very worrying time. I was nervous about the future because I didn't know anyone with a curved spine.  

From the time of diagnosis my curve was monitored every six months with xrays and scans but unfortunately it continued to progress. When I was fourteen it was decided to put me in a brace to try to stop the curve from getting any worse. I dutifully wore the hard, plastic brace for eighteen months. I wore it twenty-three hours a day taking it off only for P.E or for a bath.  I found it an extremely tough time; not only was the brace uncomfortable at first and very hot, I was a shy and self-conscious teenager, the brace stuck out underneath my clothes and my self-esteem and body image were very low. Although I was never bullied, I was teased by my classmates who didn't understand why I was a bit different from them.

Luckily I had very kind and very loyal friends who helped me through. Strangely I was never particularly bothered about the curved appearance of my back, or the pain that would occasionally flare up, but I hated my brace.

Whilst wearing the brace I had physiotherapy, which for an exercise-shy teenager like myself was not a pleasant experience! My physiotherapists were very sporty which I certainly was not! They were also very strict and they often made me feel awful about my lack of improvement. I could not relate to them and the more down I felt, the more I didn't want to do my exercises.  Recently however I have discovered that they were the exception to the rule and that I was just unlucky because now I have an amazing physiotherapist who is firm but is encouraging. She listens to me and adjusts my exercises to my needs so that they really helped improve my strength, posture and my pain levels. She also managed to achieve the impossible by persuading me to start swimming(!) which I now do twice a week.  Actually achieving good results through physiotherapy has helped me cope with my scoliosis because I feel like I've taken a bit of control and that is due to her patience, kindness, knowledge and understanding.

Despite the bracing and physiotherapy my curve progressed significantly so when I was 18 I was told I needed the operation to straighten my spine. I was devastated.  Not only was the surgery extremely frightening but it came at a time when I should have been starting my life away at Bath University, making new friends and learning to fend for myself. Instead I took a gap year to undergo the operation and I was terrified of what was about to happen. But my consultant, Mr Ahmed, changed my feelings towards surgery. He spent time talking things through clearly and kindly with my parents and I and he really helped me to understand what was happening and to feel in control. He calmed the fears that I had had for years.  He also gave me the phone number of a girl who had already had the surgery and that was what ultimately helped me to go ahead. I had never really been in hospital and had never had an operation.  I felt very alone and very frightened  so speaking to a fellow patient who had been through the same programme put my mind at ease in a way that no one else could  have done. It transformed me from being a nervous wreck to thinking 'if she did it, I can do it.' In fact it helped me so much that it inspired me to become a volunteer worker for the Scoliosis Association UK ( SAUK).

I have since seen the same turnaround in other girls preparing for surgery. After they have spoken to someone else who has gone through the same ordeal and have had the freedom to ask questions and talk through their fears, they feel less alone and know what to expect.

Although the run-up to surgery was stressful, once I was in hospital I felt well supported and cared for. During two days of pre-operative tests things were explained to me in detail, my questions were answered and I started to feel in safe hands.
My operation lasted almost 10 hours, which I think was tough for my parents. My spine was straightened and fused, supported with two titanium rods and a lot of screws.

Considering the scale of the surgery I had just had, I woke up fairly comfortable - I was given a button to press which enabled me to have a dose of strong painkillers whenever I needed them. My memory of this time is very hazy as I was asleep a lot, but I remember feeling safe and even watching a bit of TV.

I received outstanding care throughout my stay in hospital. The medical staff should not underestimate the importance of holding  a patient’s hand or taking the time to talk– it is the little touches that go a long way and the professionals that took care of me were fabulous.
When I woke up in High Dependency my Winnie the Pooh bear which I had bought with me into hospital was tucked in bed next to me and the nurses had put a little hospital bracelet on him saying that he was also poorly. It helped me smile which was quite an achievement when I was wired up to what seemed like a hundred machines.

What meant the world to my mum and dad as they were worrying waiting at home, was that Mr Ahmed rang them to say that everything had gone well - a gesture they will never forget. I spent two days on the High Dependency Unit and then because of my age I had a bed on a general adult orthopaedic ward, which was mostly full of elderly people and I found it unsettling not being with people of my own age. Luckily I had the privacy of my own room which meant my mum and dad were allowed to be with me all day and that was a huge comfort for me. I think their company helped me to recover quicker with less distress.

Taking the first steps after having my spine straightened was one of the scariest and strangest experiences of my life. I woke up from surgery feeling stretched out and for those first few days I felt like my head was on someone else's body. After undergoing an anterior correction I had a pretty big wound and felt very unsteady as the physios and nurses helped me to walk again. Although shaky and sore, I felt safe with them and I was soon well enough to go home, just seven days after I had the operation.

Going home was a difficult transition period. In hospital there is a lot of help and care and then suddenly  mum or dad must take responsibility  which I found very daunting. Recovering from scoliosis surgery is no easy task.  I was exhausted and it was certainly painful at the beginning although the pain was well controlled with painkillers. To protect my spine whilst it healed I wore a post-operative brace from neck to hips and was told to avoid lifting and twisting. Although I lost a bit of strength and had a few numb patches, they improved with time and I recovered well from the surgery and I now have a rather impressive 14 inch scar that I am proud of – scoliosis surgery changed my life and made me stronger. Twelve months later I went off to university pain free, happier, two inches taller and with a more positive body image. I finished my degree and lived abroad for a year before getting a job.

Unfortunately I have had a few scoliosis related problems recently which have required me to have four more surgeries and I have broken my back twice, but I am determined not to let any of this hold me back. I also hope that by sharing my experiences I can help others involved with the treatment of scoliosis whether they be patients or part of the medical team.

Visit Scoliosis Association (UK) for further information.