Clare's Scoliosis Story

I have three children, Sean aged 17, Clare aged 14 and Niamh (pronounced Neeve) aged 9. I have always been very conscious that one or more of them may develop Scoliosis and therefore have been almost paranoid about checking their backs regularly by asking them on occasion to bend over so I can check the rib cage. I could not see a life of X-rays, the brace and possibly surgery for any of them.

It was August, 2005. We went on Holiday to Spain, our favourite place. We love Javier and Andalucía and it was a much needed holiday. Clare was 12 and due to start senior school in September. My father had just died a few months ago and the family really needed to get over the shock and be together. For once, scoliosis did not reign supreme!

We always hire a private villa with its own swimming pool, mainly because I can go swimming without feeling self conscious about my scoliosis.

The children love being able to get up in the morning and swim all day. Clare was in and out of the water all the time and as always, I kept looking at her back, after all she was now 12 and that was the age I had been diagnosed. Sean's back looked fine. He was very slim and still is, so you could instantly see that his back was even and perfect. No scoliosis there.

There were no signs at all in Clare either and I was delighted. Thank God, she was not developing scoliosis. I really could not see quiet, shy Clare being able to tolerate the anguish of having the condition and wearing a brace to correct a curvature of the spine and the self consciousness and worry that goes with it, as well as the gradual decline of self esteem as the condition progresses. Or worst of all, surgery.

Clare started her new school, looking fabulous in her new school uniform, and very grown up. I felt the lurch of sadness and mourned at how quickly time had passed. We had purchased the regulation rucksack for all her text books and I thought what a sensible idea this was. The rucksack would distribute the weight on her back evenly and would not pull on her young spine.

It was around November 2005 that she came to me and asked about Scoliosis saying that her right shoulder blade felt uncomfortable when she sat on a hard backed chair. Instantly, alarm bells went off in my head. I needed to check her spine without alarming her. I brushed a thought of a milwaukee brace out of my head and asked her if I could check her back.

I asked her to turn around and lift up her blouse and bend down to touch her toes. I stood back and looked at her spine and rib cage, feeling horror as it dawned on me. I called Mike to have a look and we both looked at each other. I ran my finger down her spine. It seemed absolutely straight, but her rib cage was ever so slightly raised and her right shoulder blade jutted out. I almost shrieked. "Oh my God, she has Scoliosis"

I asked her to stand back up and said nothing to her. She looked at me closely. “Well, have I got it?” she asked. I asked her to stand up and looked again at her back which looked fine again once she was standing.

“No, I don’t think so, Clare” I lied

She looked closely at my flushed face and over bright eyes.

“Are you sure?" She said “You think I have scoliosis, don’t you? Is my spine straight?”

“I don’t think you have it, but I am going to take you to the doctor, just to make sure” I said cheerfully. "He may send you for an X-ray of your spine, just to check" I smiled weakly at her.

I could tell she was not convinced and she knows me so well and being a bit of an anxious child, she persisted in questioning me.

“If you are sure I don't have it, then why take me to the doctor?” she asked, coyly.

“Because I am not a doctor and your shoulder blade is slightly out on one side” I answered. “That would be why you are finding it uncomfortable. The worst he will do is check your spine as I did and maybe refer you for some X-rays”

I made the appointment and we went along. She was very quiet, and my heart was in my mouth. I prayed that I was wrong, but deep down I knew, as probably she did too.She told me that her back was aching. "Tension," I told her.

The doctor quietly examined her back and checked the curve of her spine. He told her he would need to refer her to the orthopaedic consultant, just to eliminate our worries. I looked at him, puzzled. He did not say anything. On our way out of his office, I pushed Clare in front of me and whispered to him.

“Well, has she got it?” I asked pleadingly, willing him to say no. He checked to make sure she was out of radar "Has she got scoliosis?" I repeated.

He nodded, silently and I felt my world turn upside down. It’s my fault, I thought. All my fault. Poor Clare and it’s all my fault. Images flashed into my head of her wearing the brace, my brace, the Milwaukee monstrosity. Of spine X-rays and surgery and I willed myself to be normal in front of her.

We sat in the car in silence. When we returned home she asked “Mum, what happens now? What if they say I have it? Does that mean I will have to wear a brace or have an operation? Shall I tell the school I might have scoliosis”

“No” I said. “They will simply monitor you. After all, if you do have it, it is very slight”

We received our referral letter and went along in January 2006. Clare was told to go for X-rays and was very frightened and worried. I explained that X-rays were nothing and that she simply had to wear a gown and stand there, nothing more. Like me at her age, I think she thought she would be operated on straight away!

We saw the consultant, a Mr Churchill at the same hospital I had attended at her age, Queen Mary’s hospital.

He was very nice and spoke to Clare and us at the same time, never leaving her out and asking her lots of questions.Did her back hurt? Does she participate in sport. Clare loved gymnastics. How would this affect her spine if she had scoliosis? Could she still keep it up? He reassured her that sport was great and encourgaed her to do as much as possible as it would strengthen the muscles around her spine. He also said that people are walking around all the time with small curvatures like hers and don't even know it. He gently confirmed that she had scoliosis, but in a way that reassured her.

Her curve was too small to measure. The X-ray looked good. Her spine looked virtually straight to me. He set up an exercise program for her, explaining that by keeping the back muscles strong and her posture correct, she may avoid any progression. He told us her would monitor her every three months. He saw her again in April 2006 and again in August 2006. There was no change, no progression, fantastic.

He saw her again in January 2007 and made another appointment to see her in August, this year. No progression. I was delighted and relieved. Then in May, Clare came to me and said she was worried that it was getting worse.

I checked her back again. It certainly looked a bit more pronounced. I arranged for her August appointment to be brought forward and managed to get an appointment for June. She went for more X-rays and we saw a different doctor, a registrar and not Mr Churchill. I could tell that Clare was upset as she liked Mr Churchill and was used to seeing him. The registrar had put her X-rays on a computer screen. The recent X-ray looked slightly worse to me. He told us that there was no change and said her curve measured about 9 degrees. I looked at Mike. He could tell I was getting agitated and knew why.

“Excuse me” he said “But the X-ray on the left looks worse to us, can you explain the difference?”

He set up some measurements on the screen which now told us the curve measured 12 degrees in both X-rays.

He told us that as the curve was so small, it was hard to measure and that it was around 9-12 degrees. He then told us that he would see us in a year.

I asked about bracing and he told us that it would need to progress a lot further before that would be considered, whereby I said “Do you mean to tell me that it has to progress to 25 degrees before you will brace her when you could do it now and stop it at 12 degrees?” I was really angry.

He explained that the curve would have to show signs of progression before they would take those steps. I asked whether she could be seen again in August as planned, by Mr Churchill, and he replied that too many X-rays were not a good idea and that a year would be fine.

That is how it has been left at present. I will continue to monitor her myself and should I seen any progression, I will be back on the phone to have her appointment brought forward.

Take a look at the X-rays below of Clare's back. The first X-ray on the left was taken around January 2006 at her first consultation. The curve is barely noticable. Looking at her from the back, you would never know, unless you had scoliosis yourself or were an orthopaedic consultant.

With the second X-ray on the right, we spoke to a different doctor about this one. He was a registrar and said that there was no difference in the two X-rays. To us (my husband and I) there was a difference. The two X-rays were side by side on a computer screen just like I have arranged them below.

He measured both and said the first one was 9 degrees (he had measured it before we came into the room, and the second one was 12 degress which he measured in front of us. Despite this he still maintained that there was no difference and that it was difficult to measure such a small curvature to the exact degree. He informed us that there was no difference and that they both looked the same to him. What do you think?

My main concern as we were leaving was, that she would not be seen again until the following year!!! A lot can happen in a year as many scoliosis teenagers know.

If I notice any change in her, we will be straight back up to see the proper consultant.

We will keep you up-dated on her progress on this site.

She enjoys many activities, including a gymnastics club, drama, and Irish dancing along with her sister, Niamh, in which she particularly excels, so scoliosis is not holding her back. She also plans on starting a weekly yoga class with Niamh and myself in the sports club nearby. yoga and swimming are probably the best exercises for scoliosis.

She is a very conciencious pupil in school and is in year 9, and taking her GCSE options this year. Clare excels in all she does, but is a worrier and often gets very stressed. She enjoys meditating, a healthy vegan diet and chemical free lifestyle and is very commited to Mike and me, her brother and sister, her nan, cousins and pets.

She is very creative, and her best subjects in school are Art, textiles, English language and literature, Science, drama and french. She does not like maths and finds it a struggle. She also excels in athletics and many sports.

She has lots of plans hobbies and ideas, one of which includes trying to persuade us to go back to live in Ireland, as well as designing her bedroom, clothes, drawing, reading and she is an excellent swimmer.

As of writing today, 8 Feb 2008, Clare is fairly well other than her bowel condition, but does get very tired with lots of aches and pains all over, especially her lower back. She is around 5ft 4 in height and growing all the time.

As you can see, Clare carries on with life, despite health problems and is a fairly tough cookie but being a worrier and getting very stressed sometimes takes over.

Clare says: "don't let scoliosis, or any illness spoil your fun"

I'm inclined to agree.

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