Lets not hide away our wonky backs

I finally received my official diagnosis aged 50 and have since been told I have adolescent idiopathic scoliosis. Throughout my adult life I suffered from debilitating back pain without knowing why. By this stage I had already been through a Living with Pain Course at my local hospital which I found to be very helpful. I carried on using the tools I had gained on the course to help manage my pain. At that point in my life I was told my curves did not require surgery and to get on with life.

Fast forward to Christmas 2019 when I had a very bad pain relapse. At that point I started requesting a spinal review through my GP. Eventually the local MSK physio team referred me to a scoliosis consultant in my area. By now we were in first lockdown. Her referral letter was “triaged” and her request turned down. A few months later I received another letter from the hospital saying they did want to see me but by then I had gone down a different path.

I was very despondent when I was turned down so spurred on by my husband (and the refund of our 40th anniversary holiday money), I arranged a private review at another hospital. I also paid for imagining, and the Spect CT scan was a life changer. December 2020 saw my husband and I sat in front of my laptop receiving the results from my consultant. It turned out that as well as my scoliosis now in the operable range I also had a historical spinal fracture at L5/S1 and Spondylolisthesis at L4/L5 and L5/S1. It meant the only viable fusion open to me was T3 – L5/S1. At this point my consultant transferred me to his NHS list. Before putting me forward for the fusion I first had some specialist physiotherapy from their fantastic team and a Dexa scan. Sadly the scan showed I also had osteoporosis. I am currently receiving care for the osteoporosis from my local hospital and although the fusion is not off the table, is very unlikely to happen.

I will turn 63 this summer. I still live in daily pain but do my best not to let it govern my life. I am full time childcare for my 2 young grandsons Monday – Friday. Yes there are things I really struggle to do but I try to approach my life with a what I can do I attitude and not what I can’t. I exercise every morning to keep my muscles and core strong and walk daily to strengthen my bones. My heat pads are also never far away.

I would say to anyone in a similar situation accept all the help you can get managing your scoliosis and do your best to stay active. Lets not hide away our wonky backs but instead support each other and help raise awareness of scoliosis for those coming after us.