Sarah's Story

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A year after her surgery, Sarah was asked to write about her experiences with her spinal surgery, for publication in a magazine. This is what she wrote.


In February 2000, at the age of 16, I underwent spinal surgery for scoliosis at Stanmore Hospital. By the time of the operation the curve in my spine had reached 45 degrees, a sudden increase in the last two years. I was born with Congenital Fibre Type Disproportion, a condition which has meant that I have always had particularly weak muscles. From a young age my spine had been slightly curved, and I had always known that at some point it would get worse and that I could need a brace or surgery.

I underwent my surgery at Stanmore hospital in Middlesex. It was performed by Mr. Morley whose care I had been under at Guy’s hospital for several years. Unfortunately it was first put back a week, and then another at the very last minute, even after I had been admitted as there was not a spare ventilator, which they thought I may need. Although this was annoying I did need a ventilator in the end so it was for the best. Before the operation I was shown the ICU unit where I would be moved to immediately afterwards with a group of patients who were having the same surgery. I was taken through certain things I would need to do after the surgery, such as turning, brushing my teeth lying down and sitting up in the correct way, at my bed on Stanmore’s adolescent ward. I was also given a choice of painkiller - an epidural, or a hand-operated pump. I chose the epidural after being informed that it was continuous, whereas with the pump I might wake up in pain after not using it all night. It was a decision I later regretted, as I suffered badly (and still do - although to a much lesser extent now) from nerve damage in my foot caused by the epidural.

On the morning of the operation I was given a dose of pre-med, and the next thing I remember is waking up the following day in ICU! I stayed there for three days. This was longer than most others as my muscle weakness meant that I needed support for longer. After three days in ICU (Intensive Care Unit), a period that slept I through almost completely and hardly remember, I was moved to the HDU (High Dependency Unit), which was part of the same room. I remember very little of the next few days too, but I do remember being told that I could return to the adolescent ward. The unfortunate layout of the buildings meant that I had to travel across the grounds in the open air but the porters made me as comfortable as possible. Each patient on the ward was assigned two nurses to look after them although others were always ready to lend a hand.

I slept a lot during the next few days, and passed the time that I was awake listening to music or books on tape, or talking to Mum or the nurses. There was a number of televisions with videos that could be moved from bed to bed and a well stocked video cupboard to keep everyone entertained. In the evenings there was Radio Brockley, which everyone could listen to if they wished on a headset by their beds. Highlights included requests (always cheering to hear your favourite song) which was also open to parents, and Bedside Bingo. Between the three of us we won three times, a Radio Brockley mug and pen each time!

As the other patients on the ward began to stand and walk they were able to walk to my bed and chat. When I was up to it, visits from friends also gave me something to look forward to. They were well provided for on the ward. There was enough space around each bed for several people to sit and enough chairs. We could chat privately and they were never told off by the nurses! When I was worn out they were able to go to the day room and play pool or watch TV. My only complaint would be that it was such a difficult place to get to without a car (so I’ve been told!)

After the epidural was removed I was kept on oral painkillers which meant that I was not in too much pain at any time. They were brought to me by the nurses when asked, and offered at points throughout the day. I was not at all hungry at any time and only managed the odd yoghurt, and few spoonfuls of the meals on offer (which could have been more appealing!) I had the 54 staples carefully removed from my wound after fourteen days. This was reasonably pain free as most of my back was numb, with only one posing any difficulty. The nurses kept trying, after more doses of painkiller!

On the Monday, three days after I had been moved back to the adolescent ward I was fitted for a brace. I was wheeled to the brace clinic, after being moved from my bed to the trolley by a team of nurses. The brace was made to fit me exactly and had to be cast in plaster by wrapping me in bandages. It was an uncomfortable experience but didn’t take too long. The brace was necessary to support my back as the wound healed and the titanium rods settled. We were all surprised at the speed with which it was produced, appearing on the ward two days after the mould had been taken. I spent small amounts of time in it at first, to get used to it and decide whether any adjustments needed to be made. Once I was wearing the brace I was able to sit up for the first time. It felt strange at first, as I was three inches taller than I had been when I lay down. It took a few sits to get used to it but I was eventually helped to a chair by the nurses. I sat up for longer each day, even managing to sit up long enough one evening to force down some McDonalds!

Once my stamina increased I was able to ride in a small wheelchair to the hospital shop, or around the ward. I could be taken to the physiotherapy department, where I was given exercises to regain my strength and help me walk. I had considerable trouble walking at first, partly because of the nerve damage in my foot. I was given a walking frame to assist me and used it to walk small distances around the ward. I could also now be wheeled to the occupational therapy department where I was given equipment to help me when I left, for use around the house and in the car. The department at Stanmore worked in conjunction with my local health service, who had visited me before the operation to evaluate the house to see what I might need.

Over the following days I was assisted with showering, and shown what to do at home, as well as learning how to put on and remove my brace. I practiced walking up and down the ward with the walking frame and I was able to visit other patients in their beds.

Before a patient can leave the hospital they have a certain number of targets that they must achieve. These included  walking a certain distance unassisted. Unfortunately, these were keeping me in hospital while others were leaving. Because of my muscle weakness I was not progressing at the same speed. Luckily we were able to get in touch with our local health service, who assured the staff that it was OK for me to go home, as I would be visited regularly by nurses from the paediatric homecare team. I left Stanmore on the first of March.

 For the seventeen days that I was in hospital my Mum stayed in the parents accommodation, which she was pleased with. “It was in a separate block but still near the ward. There were plenty of rooms and they were comfortable, if rather small. There were good facilities for eating although the shower and bath facilities could have been better! We always felt welcome on the ward as parents, even late at night. I knew the nurses would contact me if I was needed, and I found them friendly and caring.”

I wore my brace for six months, until August 2000. I travelled back to Stanmore, where I was x-rayed and reviewed by Mr. Morley. It was a great relief to be told that everything was as it should be and that I no longer had to wear the brace which had been even more uncomfortable than usual in the hotter months. I also paid a visit to the nurses who had looked after me.

Sarah Hatch, June 2001


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