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Sarah Little

I was aged 20 when I was first diagnosed with scoliosis. my family and I felt a mixture of shock, confusion and relief when I was finally told the answer to something I had wanted to know for a long time.  But it was to be a good few months after that when I would be properly diagnosed with all my curves.

Around the age of 10, I started to have an ache in my neck. Some days would be worse than others but I didn’t really know what helped or what made it worse. I was a keen swimmer and took part in school sports. So around the age of 11 when I was still struggling with neck ache and strain, my mum took me to the doctor’s. We were told that it was probable that it would be growing pains and it was suggested that I try lavender oil to help ease the pain. I tried the oil and it may have helped ease it slightly after a swim, but months passed and I was still struggling with this annoying ache, so I went back to the doctor. Again the doctor presumed it was either growing pains or that maybe I was swimming awkwardly, and now that I had joined high school it may be that carrying a heavy school bag was another reason and once again lavender oil was suggested. So I carried on as best as I could trying to ignore it and took part in all school sports and carried on with swimming.

However, as the years went by at high school we went to the doctor numerous times to figure out why my neck was still bothering me. Although I tried to forget about it, it never really went away and it was frustrating knowing I had pain but my GP (and other doctors we saw as well) simply couldn’t see it and in a way tried to make me believe there was nothing really there, so I finished high school with still no answer to my problem.

When I left school I started college where I studied art for 3 years. During this time I began my first part-time job waitressing, I met new friends and had college work to do so my swimming unfortunately became less and less frequent and went from two or three times a week, to maybe once a month where I would swim a mile breaststroke. During the 3 years at college I still struggled with neck pain and occasionally I would get lower back pain, but it wasn’t that often so I put that down to painting for any length of time at college or sitting on uncomfortable plastic chairs. Then after 15 years of education I decided I wanted to have a break, gain some work experience and travel, so I left with some good grades and began a full time office job where I was continuously sat at a computer for 8 hours a day.

Being 19 at this time I saw no problem in being able to handle a simple computer job, but within the space of a year my neck rapidly got worse to the point where I was struggling with constant sharp pain in my neck, shoulders, around my left shoulder blade, and I had bad lower back pain. Within that year my hands occasionally got very weak and I would lose the ability to use the computer mouse or keyboard for 5 minutes or so. For a few months I just simply worked through the pain as best I could, but it was difficult so I decided to give the doctor one last try. I explained that I had been struggling with neck pain for 10 years now but it had got considerably worse with my job and I have reached the degree where unless I was going to type with my nose, then I couldn’t do this job any longer. So I eventually had to take time off sick. I did have to push for an X-ray to be done and an appointment with an NHS spinal surgeon, followed by an MRI. The appointment didn’t go well. The doctor looked at the X-ray results and also examined my back for himself. He told us that I had scoliosis (something we had never heard of) with one curve at 44 degrees. He said that surgery was pointless as it was purely for cosmetic reasons. He said swimming and Pilates should help and that was that, with no follow-up appointment. Annoyed, I went back to my GP who (along with another GP at my surgery) had never heard of scoliosis. This was shocking and frustrating and the stress of all this was only making my pain worse.

Determined to get some answers to our ever-growing questions, my parents and I travelled to Birmingham to see a private specialist who sent me for more X-rays and another MRI. We went back to see him about a month after my 21^st birthday and he explained that I had three curves – one in my neck at 23, a thoracic at 40, and a lumber curve at 53 degrees. I have no idea which curve the NHS spinal surgeon found but whichever it was he didn’t measure it properly! The specialist was helpful, knowledgeable and clear. He said because of the curve in my neck, surgery could be complicated as it could result in me needing a very risky operation on my neck. He didn’t really want to do this but left the decision up to me. I did think about it for a while because I didn’t want to rush a decision like that, but came to the conclusion that I would find ways to manage the pain and think about surgery at a later date. He suggested another X-ray in a year and that swimming was the best exercise but not breaststroke, as it’s not good if you have neck problems.

Over the following months I got a new mattress for my bed (this was a considerable help), joined a gym where I swim and walk on the treadmill, left my office job, applied for a Fine Art degree, packed my rucksack and went travelling round Europe for 2 months with my boyfriend. It was a fantastic summer and the sun on my back helped so much! After I started my degree, I saw my specialist again. It turned out that in the space of a year, my cervical curve changed from 23 to 17, thoracic from 40 to 53 and my lumber curve had pretty much stayed the same. He said that it was because I was still growing and my body was trying to straighten itself out as best as it could, but that the progression should slow down now that I am 22.

I have now finished the first year of my degree and I believe that doing something I enjoy has been a big part in my recovery from the horrible pain I suffered permanently for almost 2 years. My neck still aches and I still get back pain; however, it has eased dramatically thanks to the mixture of changes such as swimming. There may be no cure, and so far I have not had any surgery, but I am convinced knowing all those years ago would have made a difference. I strongly believe that raising awareness for scoliosis is so important. By doing this, it would help people, and their doctors, to understand the importance of being checked and be seen by a specialist.