"Looking back now, I think that there were so many obvious signs. How on earth did I manage to drop the ball on this..."
This is my youngest daughter Isabella, though she generally likes to go by Ella. Ella's currently 14 years old (15 next April). In my view, Ella truly is a 'wee angel'... more than that, she's fast becoming one of my all time heroines.
For so many of us, 2020 began like any other year. For Ella, January brought with it her first period, launching her into puberty at just a couple of months shy of 13. You might be wondering what relevance that has to this particular blog post? In a nutshell, it was the very trigger that began Ella's scoliosis journey.
Over the course of the past 23 months since the beginning of menstruation, Ella has been tracking her cycle like a true boss-girl! She has eaten extremely well, and has what many women might envy; a very regular cycle. Cycles have come and gone with very little by way of signs or symptoms. Ebbing and flowing, as one might imagine nature intended.
Yet beneath those 'infradian rhythms' (female monthly hormonal cycles) something more sinister seemed to be brewing. Along with the surges in sex hormones came the expected surges in growth hormones, leading to growth spurts. However, rather than responding in a 'normal' growth pattern, Ella's body was responding quite differently, and hidden from plain sight.
Lockdown Loss of Function
During 'lockdown' here in Ireland, schools and activities moved to an 'online' forum. For Ella, her ballet classes were hosted on Zoom and she loved the fact that she could continue to dance. On a number of occasions, Ella mentioned that she seemed to be having difficulty with some of her 'pointe' work. She complained that her right ankle seemed to be somehow 'weaker'.
Upon hearing this, Ella's ballet teacher gave her some specific strengthening exercises for her feet. She spent much of her time throughout the summer working on her exercise, as well as generally mucking about, whether on her bike, or (as regrettable as it is with hindsight) hours of trampolining. I have since learned that trampolining is one of the worst activities for scoliosis!
Fast forward to summer of 2021 and Ella still continued with as much activity as possible, including a return to hockey, all the while unconsciously physically compensating whenever she reached a limitation.
I was still unaware of what was happening in front of my eyes!
Yes, little things were beginning to flag in my mind, but no aha moment as such. To be honest, I thought that maybe the way that she was 'standing awkwardly' was some sort of teenage attitude. Much of the time, both of my daughters lounge around in comfy wear, so Ella's posture was never quite obvious.
Call to Action
Until one day in September '21, as she was standing at the kitchen counter with her back to me (she was wearing leggings), I noticed that her left hip looked dramatically more raised than her right! All of a sudden little alarm bells rang in my head...I asked Ella if she was very aware of the difference? She told be that quite sometime back she noticed that her waist 'dipped' in more so on one side. She recapped how she was having difficulty at ballet and that in fact her right foot didn't actually tip the floor while 'en pointe'!
Just then, Ella showed me what she meant about her waist! For all that time, she had been self-adjusting with postural realignment manoeuvres learned during 12 years of ballet! Oh-My-Goodness!! Looking back now, I think that there were so many obvious signs. How on earth did I manage to drop the ball on this??
Ella in 'relaxed' posture...(December 11th 2021)
Ella in 'self-adjusted' postural alignment... (December 11th 2021)
Scoliosis popped into my mind briefly, but I wanted to believe that perhaps there was some other possible explanation... perhaps playing hockey for so many hours per week was 'building Ella up' more so on her left side?? Surely there must be some simple answer!
I asked Ella to make her ballet teacher aware of our concerns (the ballet classes had only just re-commenced in studio); her ballet teacher was relieved that I had noticed! She had only just seen Ella in person for the first time in practically 18 months, and she had noticed immediately.
Within the next few days, I had made an appointment with our General Practitioner and with an NT/Physical Therapist colleague of mine.
Within days, Ella:
received the diagnosis of scoliosis from the GP
was referred to an orthopaedic surgeon
scheduled for x-rays
met with the PT and underwent a comprehensive 90 minute assessment!
Talk about a flurry of activity! I'm sure Ella's mind was in turmoil. The GP's initial thoughts were that Ella would need intense 'bracing' at the very least. After hearing that she may need to wear a scoliosis brace, as you may imagine, Ella was really upset. She recognises the fact that bracing is a viable option for some, to at least slow the progression of a curve. However, at 14 years of age, the self consciousness of a teenage girl sets in..."but I won't be able to wear the kind of clothes that I like??...I'll be different from my other friends!"
As a parent, it's difficult to watch your child going through something you know that you ultimately can't handle for them. We're all fully aware of the need to protect our children's mental health throughout their formative years...it's so heartbreaking, yet crucial that they each learn how to cope independently of us parents!
The Physical Therapist was very optimistic that much can be done with PT and gave Ella a very structured plan to increase strength, flexibility and conditioning of the core, glutes, back etc. This helped to put Ella's mind somewhat at ease that there are some aspects still within her control.
What Lies Beneath
October 2021, and time for x-ray. I stood in the x-ray room, behind the screen while the x-rays were captured. It took me a moment to recognise the 'reality' of Ella's situation! Inwardly, I had held onto the belief that "the Cobb angle is probably not too bad..!" Boy, was I wrong!
Ella's x-ray: October 2021 - "significant scoliosis at the thoracic lumbar junction...Cobb angle approaching 47 degrees"
Ella's x-ray: October 2021 - Scoliosis T11 - L3
The Hero's Journey
Just ten days ago, at the beginning of December 2021, Ella had her first appointment with a Consultant Orthopaedic Surgeon.
Basically, Ella’s now gone beyond bracing…so that’s off the table.
The two other options that are available to her now…
X-ray again in 6 months time to ensure that the curve hasn’t progressed past 55 degrees. Ella then needs to decide if she wants to continue on a rigorous physical programme for life to maintain core stability/strength
opt for surgery to fuse the lumbar spine
The first option leaves her still with a curve but flexibly (no guarantee of no pain). Also, there's no guarantee that the curve won't continue to progress, even when she has stopped growing.
The second option means a straighter spine, more limited range of motion and flexibility, plus the likelihood of degenerative disks below the fused section of spine.
The best option may be decided by pain at the end of the day.
This is such a massive decision for Ella to make... hence the Consultant has given her the 6 months of consideration and some research to do before the follow up x-ray.
He was highly impressed with the way that she is able to realign her posture (see photo of her in her self-adjusted posture above) and wants her to continue with all of the activity that she’s doing… 9.5 hrs of ballet and hockey per week currently!
Truthfully, Ella was somewhat knocked back after the consultation, as she thought that there may be something that could be done to correct the hip hike, waist 'dip' etc., and in particular the issue that she has around not being able to stay "en pointe" on her right leg.
However, the Consultant just reminded her that she will need to learn to adapt and modify; to play to her strengths rather than focus on the weaknesses. He was superb with her!! His manner was really pleasant, and he spoke directly with Ella, as I had hoped.
He reminded Ella that it will be entirely her decision, as it’s her body… and there’s no going back from spinal fusion.
It's a tough decision ahead of her, no doubt! She truly is my heroine!