Written by Carolyn Parker
“I’m not surprised you have back pain with that scoliosis.”
The MRI technician’s throwaway comment stunned me as I swivelled round to sit on the edge of the bed. I was still disoriented from spending forty minutes in a metal tube concentrating on my chosen Yes CD, which helped to distract me from the loud clunks, clicks and bursts of gunshot-like noise made by the scanner.
“What scoliosis?” I replied in a surprised tone.
My story began in earnest here at the age of fifty-eight, having gone to the GP with right-sided lower back pain, numbness and pins and needles in my right upper thigh, lower abdomen and groin area.
On reflection, I’m aware of several earlier events that may have indicated something was amiss.
I love water. Most days of the school summer holidays I’d be at the local open-air pool swimming or throwing myself off the diving boards. However, one afternoon I misjudged my take-off, entering the water at an awkward angle. On surfacing I struggled to swim to the side, keenly aware of sharp pain down my left side. The whole area was in spasm. Luckily my mum was there to help haul me out of the water and drive me to the Accident & Emergency Department. Although nothing showed on X-ray, it took several weeks before I was pain free.
In September 1977, aged eighteen, I left home to train as a physiotherapist in Birmingham. Once a month the first-year physio and medical students met up for a joint lunchtime lecture. I recall one on the subject of common spinal conditions which I offered to be a model for. This involved me standing with my back to the audience as the consultant lecturer demonstrated a basic back assessment.
As I bent forwards I heard someone comment that the right side of my ribcage was raised. I thought this was odd but dismissed it at the time.
Three years on I was fully qualified and working on a stroke rehabilitation unit and Day Centre near Sheffield. The work was physically demanding, once causing me to need six weeks off sick due to acute sacroiliac pain. I had fallen sideways onto a crash mat while attempting to transfer a tall patient from his wheelchair to the treatment couch. Interestingly, all the lifting and handling techniques I was taught are now outlawed as unsafe; hoists being routinely used these days to transfer patients.
To broaden my experience I later moved to a large general hospital in Coventry city centre. I began to experience sporadic bouts of right-sided lower back pain at L1/2, L3/4, L4/5/S1 levels, treated successfully with Maitland mobilisation techniques and interferential therapy.
I left work in 1984 to give birth to my first child. Late on in the pregnancy the antenatal clinic became concerned about the size of my pelvic canal. They requested X-rays to determine whether I should have an elective Caesarean section. At 38 weeks pregnant, lying on my bump was both tricky and uncomfortable but thankfully, the obstetrician’s fears were allayed. No mention was made of scoliosis.
The birth was natural but not easy, narrowly avoiding a forceps delivery. My second pregnancy was also problematic, with severe sciatica in the third trimester and my baby being admitted to SCBU due to a lack of oxygen during delivery.
Were any of these facts an early indication of scoliosis?
Was my lumbar curve not apparent at that point, not noticed, or did they think I already knew about it?
Returning to my MRI. Knowing I had scoliosis of some kind, thanks to the scan operative spilling the beans, I researched the subject online, joined a social media scoliosis support group for over 50s and contacted SSR (Scoliosis Support & Research), who advised me of a specialist scoliosis consultant in my current area (Leicestershire). My doctor referred me and my name was added to the long waiting list.
I decided to help myself. I joined a hydrotherapy and Pilates class, consulted a physiotherapist regarding a daily exercise programme to strengthen my core and improve flexibility, and began a regular dosage of painkillers and prescribed anti-inflammatory medication.
By the time my hospital appointment arrived I had a good understanding of my condition and how to manage it. The consultant talked me through my MRI and X-ray results which increased this further and reduced my fears. He also explained why, in his opinion, it was too risky to correct my curvature with surgery. It was over to me to maintain my strength and mobility. To be honest I felt slightly disappointed after the appointment, as there was no magic cure, but reassured I couldn’t damage myself by exercising within my pain limit.
Strangely, the pain and other symptoms moved to the left side and began to increase two years ago. A second MRI (July 2023) revealed a degree of deterioration with several bulging discs, partial spinal stenosis, nerve compressions and a L1/2 benign tumour (haemangioma). My lumbar curve remained at a 40-degree Cobb angle. At this point my work began to be affected due to a change in pain pattern. I could weight-bear (stand, walk or sit upright) for up to forty minutes before needing to lie down. Mornings were the worst as my pain registered 6–8 (out of 10) and my upper body was tilted at a 30–40 degree angle to the right when I first got out of bed. This gradually improved through the morning with a mix of movement, rest and stretches. I had to reduce my care support hours to start later and pivot my business to a companionship service, as the stooping and bending necessary to assist clients shower, dress or toilet was now too painful.
In need of further support I created a morning stretch routine and accidentally discovered a position that quickly reduced my pain and other neurological symptoms: crook lying on my left side and twisting my upper body to the right.
This was a lightbulb moment for me.
Each time the pain spiked at work I withdrew to a nearby room and assumed my pain-busting position for two minutes while my client was in a safe position (his family were very understanding about this but it wasn’t professional and eventually I knew I had to retire).
As my hours reduced so the financial pressure increased. Initially I used savings to top up my dwindling income but when these ran out my expenses quickly outweighed my pay. I knew I could apply for government-sourced financial assistance but fiercely resisted the idea initially. It felt as if I had failed by admitting I needed to apply for benefits.
The current system didn’t help my self-esteem. It appeared to assume I was not entitled to any support until I could prove I was telling the truth; that I was officially disabled and unable to work longer hours. The first weeks after “signing on” were anxious ones as I was required to actively seek work I knew I wasn’t physically able to do. After attending my work capability assessment I cried, fearful of being disbelieved again and wondering how I would manage if the outcome wasn’t favourable. Fortunately, the assessor agreed I did qualify for enhanced support which was backdated to the day I first applied. The relief was immense.
Having successfully jumped this hurdle I turned my attention to completing the PIP application, an equally long-winded and exhausting process. Despite being limited in the distance I could walk, I was only awarded the care component of PIP.
There have been positives in my journey.
I was proud to have contributed to the Lilac Review Report, sharing my ideas on how current systems work and discussing potential changes to support, rather than scare, disabled entrepreneurs and businesses.
A good sense of humour is always a great asset, my superpower of spotting a flat-topped wall or other spot to assume my recovery posture at three hundred paces, evoking some comical conversations.
No matter how I’m feeling I’ve learnt to be grateful for everything I have, rather than dwelling on my difficulties.
Having reached state pension age this year I am moving to my dream Cotswold location, downsizing to allow me to augment my income. I am looking forward to learning new creative skills, getting involved in local community events and continuing my writing, having published my first memoir written during the Covid-19 pandemic.
In summary:
My scoliosis journey, though unexpected and often challenging, has strengthened my resilience and grown my confidence to self-advocate.
I am who I am as a result of my life experiences and for that I’m eternally grateful.
