My scoliosis story

(March 2009 – October 2009)

       My daughter is now 12 years and 4 months old, and has never had any medical problems before. During the month of March 09 I was taken aside by her dancing teacher after a dance lesson. She asked me had I noticed anything about her posture? When I looked blank, she told me that she appeared to be learning over to one side during the lessons. She said maybe it was just a symmetrical thing, but it could also be a condition called scoliosis, something that I never even heard of before, and maybe take her to the doctor and ask him to check it out.

       The only thing that I had maybe noticed was a slight hump forming on her right hand side near her shoulder blade, which I just imagined was her growing, and as she is quite slender was more noticeable than other girls as they are growing into young adults.

When I got home that night I told my husband to have a look and mentioned the word scoliosis. The next day we both looked this up on the Internet, and although it did not look too bad, it looked like a classic case of scoliosis we immediately made an appointment to see the doctor. The doctor made a referral to the nearest children’s orthopaedic department at a local hospital, for an x-ray of a typical right thoracic curve. The time spent waiting has been the most worrying and upsetting part. It took 2 months to get an appointment at a local hospital when they took an x-ray there. I was slightly relived that the x-ray showed an angle of 33 degrees, because I had looked up everything on the internet and ever though this angle was not good, it was at a treatable stage. 2 months later we had still not received an appointment to see the spine specialist and from reading up on this condition I knew that it could progress very quickly in an adolescent girl. My daughter was then 11 years and 10 months old.           

After returning to my original doctor at our local surgery I pleaded with them to chase up the appointment with the specialist before things got any worse. We finally received an appointment for July 2009 four months after scoliosis had first been noticed by a dancing tutor.

       After x-rays had been taken we went trough to see the specialist who told us that it did not look good and measured an angle of 50+ degrees. We sat there shocked as he told us that he could perform an operation in 2 months time before thing progressed even more. I had been reading upon everything to do with scoliosis and felt that this was a big operation to just agree to, without trying other treatment first. The specialist told us that nothing else would work, but he would prescribe a brace to try to hold the curve until we saw him again in 3 or 4 months time, this was under my insistence, with him being very reluctant.

      The brace is typical NHS one, which my daughter wears for approximately 16-18 hours per day and more at the weekend with a bit of blackmail, but I feel does not give a good correction which should be an essential for a scoliosis curve. It also took 6 weeks to be fitted. Since the appointment in July I have been on a mission to find anything that may help the curve. I know in Europe it is treated with exercises ( Schroth) and bracing giving good correction. After looking on the internet I found some Schroth therapy in London and made an appointment to spend two weeks there over the October school holidays. Although 4 weeks are recommended school and work demands make that impossible. I am hoping to do the therapy in 2x2week courses, and in between will do the exercises with my daughter after observing her at hard work with Joanna. The next specialist appointment is due in Manchester in November 2009. I am hoping that there will be no worsening of the curve and even maybe a slight improvement after all the exercise.   There is nothing worse than watching your daughter’s body twisting before your eyes. One of the next things that I plan to do is to get a better brace giving good correction if not too late.

I will do all that I can, as the thought at my daughter spending the rest of her life with a spine that has been fused to give limited flexibility. Rods and screws put in to try to hold the spine in place is not something I want to agree to at the moment, as well as the time spent off school and to give up her dancing for the next 6 or 12 months is not something that she wants to do either.

(November 2009 – February 2010)

       The two weeks spent in London with Joanna has helped my daughter by using specific Schroth exercises for her type of curve. Both have worked very hard and Joanna’s hard work, dedication and commitment to her job made the exercises seem more like fun than physio work. She now continues to work on her exercises at home, 5 times per week for 30 minutes. After re-visiting the spine specialist in November 2009 we was pleased to see the x-rays and to see that the curve had not progressed any further since July 2009, despite the specialists prediction about this type of high thoracic curve.

We returned to Joanna during the half term of February 2009. She was very flexible with the hours that we could attend and due to a lot more hard work we managed to finish the total hours recommended with the encouragement and motivation. Even we had time to visit a few of the London sights. We have had another brace fitted since the last appointment, but still feel that this is not giving the correction required and merely holding this curve in position. The next goal is to pursue a cheneau brace that does give correction. My daughter continues to do her prescribed exercises daily to stretch and strengthen her spine and other exercises to help her, her posture looks much better. Due to all the training, she is standing and looking more confident. The uneven muscles on her back appear to have evened out more , and her shoulders appear to be straighter. I can highly recommend this type of physiotherapy for anyone with a scoliosis condition, do not use a wait and see approach.

Thank you Joanna

Sharon