Imogen was diagnosed with Idiopathic Adolescent Scoliosis in October 2017. I had ordered her some crop-tops and she was trying them on. There was a bow stitched in the middle at the front and it was off to the side. I tugged the crop top to the right and she wriggled…and the bow went off to the left again. She was crooked! I commented that she was a bit crooked and she told me that she had noticed that she had a waist on one side and not on the other.
I did what every good mother does in these circumstances and googled it. The first results that came up were a diagnosis of scoliosis and I refused to believe it could be that. I am aware that Dr Google can throw up all kinds of rubbish so I tried not to worry. There was a simple at home test you can do to find out if your child has scoliosis so that’s what we did.
You stand behind your child, ask them to touch their toes and look at their back. A child with scoliosis won’t have a flat spine when they lean forwards. They will have a slight hump on one or both sides. This is due to the rotation of their spine under the ribs. Imogen did have a slight hump. Here are the pictures:
This photo shows Imogen’s back. Her crop top is adjusted so that the straps are the same yet the left shoulder strap is looser than the right. You can also see her waist is deeper on the left and her leggings aren’t straight. I got her to do the forward bend test and this was the result:
I suppose it isn’t a great picture but you can see that there is a slight hump on the right side and her spine isn’t straight. I called the GP, made an appointment and took her in. We saw the Doctor that specialises in skeletal disorders and he confirmed that she had very mild scoliosis and referred her for an xray. She was fitted in for an xray 2 days later.
The first xray done in Blackburn on October 20th 2017 showed a cobb angle of around 14 degrees. The cobb angle is the angle off of straight. They measure the angle top and bottom of the curve and then work out the angle of the curve. I don’t know what the mysterious maths is…but a 14 degree cobb angle isn’t bad. She was referred to Manchester Children’s hospital. We got the appointment through for 2nd Feb 2018 and the consultant saw her and wanted to re xray her but it had only been about 12 weeks since her last xray at Blackburn and he only wanted to re-xray her because he hadn’t had sight of those. I asked them to get hold of those xrays and look at them since I didn’t want to keep getting her a full spine xray especially when he could just look at those that had just been done.
After having sight of the xrays they wrote back to us telling us that they would be taking the “watch and wait” approach and that we would be called again in a few months but we were sent for an MRI to rule out “anything untoward” pressing on the spine and causing the scoliosis. They also checked for spondylosis and other things like spurrs and defects and all kinds of worrying things. It took weeks for the results and I kept myself up all night every night researching scoliosis and how best to help her. I kept telling myself over and over and over that there was nothing “untoward” and I was so afraid that something horrible was going to show up on the MRI that I couldn’t even speak to Paul about it. I just kept it all in and kept going until finally I got the letter and then I just burst into absolute floods of tears. I sobbed and sobbed with relief! It was a really long wait for that bit of news!
By July her spine looked like this:
and by August it looked like this:
This is not the best picture because as you can see she isn’t sitting straight, but you can see that her back is twisting considerably. At this time she was seeing an osteopath weekly and doing yoga at a class with me. Some people swear by barefoot shoes and so I got her some Rocketdog Jazzins because they are reasonably priced and according to Imogen are still “cool”.
Imogen’s next appointment in Manchester was September 2018 and the consultant wanted to do another full spine xray. It had only been a few months since the MRI and he explained that the plan was to do a full spine xray every six months as part of their observations of the progression of the curve. I wasn’t happy with this, I was really concerned because when the radiologist did the first xray he kept double/triple checking with me that it was a full spine scan she needed. He said that due to her being so young and still growing he would prefer not to do a full xray. This had put doubts in my mind about the safety aspect and I told the consultant I felt the risks were too high and asked him could he “eyeball” her? I was told no. He didn’t try to convince me, just made a referral to a consultant at Alder Hey because they have an EOS machine which uses 1/50th of the radiation of a standard xray machine, therefore massively reducing the exposure to radiation and the risks associated with it.
We had a wait for the appointment to come through and during the wait we watched her get wonkier.
By April 2018 you can see there is a marked difference in the height of her shoulders: her right shoulder is lower than the left. I read about swimming being really helpful and got her into some one to one swimming lessons hoping to keep her spine strong by working those big back and shoulder muscles.
By her birthday in July her curve had progressed so that I had to take her birthday dress in by about an inch under one arm and had to adjust the shoulder so that it didn’t gape on the one side. She still looked perfect.
By October she was thinner and wonkier. She had started to complain that she was having to get out of the bath to catch her breath and was starting to be unable to eat all her meals saying she felt sick. We were unsure whether this was because she was physically being impacted by the curve (ie her body was effecting the size of her stomach) or whether she was simply anxious. She was still her usual happy self in the main, but things were starting to impact her more.
The forward bend test started to show a marked increase in rib-hump size. She could no longer touch her toes. This picture is from Dec 2018.
By the time we went to Alder Hey in February we knew that her curve had progressed much more. She was complaining of tingling in her left foot after playing out, she no longer took baths, preferring showers, she walks up hill putting the right foot down normally but she tiptoe walks on the left. I assume for balance so that she is able to get up the hill with level hips.
She had another xray this time with the EOS machine and we found out that she actually does have slight spondylosis (Manchester didn’t pick up on this even with the MRI) and also that her curve is around 38-40 degrees. It was decided that we would brace Imogen and hopefully hold the curve. Imogen has not yet started her biggest (post menarche) growth spurt and so the hope is that if we get her in a brace we should stop the curve progressing any further.
At first I felt incredibly guilty that I hadn’t allowed the consultant in Manchester to xray her at the earlier appointment but the scoliosis nurse at Alder Hey said I had done the right thing in waiting to see them since it was much better care at Alder Hey and that she agreed about the radiation exposure. I will never know. As a mother you make the best decision you can with the information you have at the time…I just don’t know if it was the right thing to do or not.
Imogen went back to be scanned for her brace, in the meantime I was on every scoliosis Facebook Group I could find trying to understand the information I had been given at the hospital. Her letter said she had a Risser of 0 but what does Risser 0 mean? This basically refers to the calcification and ossification of her growth plates. A Risser of 5 would mean that the patient has stopped growing. A Risser of 0 means they haven’t yet properly entered puberty and therefore have a lot of growing to go. For Imogen this is good and bad. It means she is of a much higher risk of her curve progressing and needing surgery: BAD however it also means that we can do something about it: GOOD.
If she had finished growing we would be left with a 40 degree curve that may or not get worse with age and degeneration. BUT with all my research I had done online I knew that there were things we could do. One of the things the consultant had remarked upon was Imogen’s flexibility. She hula hoops, she roller skates and swims. She is an extremely active child. We need to preserve this mobility.
In America, Canada and Europe they regularly refer children for Schroth Therapy which is a physical therapy designed to halt and reverse spinal rotation and deformity. They brace with a Gensingen brace which is a corrective brace rather than the brace offered by our NHS which is purely designed to hold the spine so that the curve doesn’t progress. The main downside to this Schroth therapy and bracing method is cost: £3400 but I the more I read on the subject the more I knew this was the way forward. We needed to protect and improve Imogen’s mobility, not simply watch and wait.
I will update you with more on our Schroth journey in my next installment!
Thanks for reading,