Someone recently asked me for a bit of a back story. I knew they were looking for a short bio but I did giggle to myself for a little while. If they had wanted an actual back story, well, it certainly wouldn’t be short. It would have been a long and complicated back story about a life full of pain mostly because of scoliosis.
My Life With Scoliosis has Meant a Life With Pain
I was diagnosed with scoliosis when I was ten years old, but the doctor who saw me at that time did nothing to help. He should have referred me to see a scoliosis specialist, but he didn’t. In fact, he said it was only a cosmetic problem. But he was wrong. Scoliosis has affected my life so much. I live with chronic debilitating, disabling pain due to it.
My Life With Scoliosis…
Before I was ten, my life was normal. Then, as if overnight, my spine went out of shape. My Mum took me to our GP who immediately referred me to the local hospital to see an orthopaedic surgeon. The surgeon diagnosed me with scoliosis but said it was a cosmetic problem only and it would never cause me a problem.
Strange Advice
Then he gave us some advice. Very strange advice. He said that if I put weight on, nobody would notice the strange shape. I was tall and thin and didn’t put weight on easily so he suggested that I eat lots of Mars Bars.
Yes, he really did suggest that!
He saw me regularly over the next few years and took more x-rays at every appointment. As my body changed, so did my scoliosis. As my hips developed, my scoliosis also developed. Yet, he wasn’t concerned. He still assured me that it would never cause a problem.
It Did Cause a Problem
By my mid-teens, I was having back pain. It wasn’t severe at that stage and I didn’t want to make a fuss about it. However, by my late teens, the pain was increasing. If I was on my feet for too long, the pain was often excruciating and made me faint. My GP prescribed painkillers and referred me back to see that same surgeon.
The next part of the story still angers me. It’s the part that will always make me wonder if my life with scoliosis could have had a different outcome.
After explaining my pain to him, the surgeon clasped his hands in front of him and said, “I don’t really know much about scoliosis. Would you like me to refer you to a specialist?”
Why Hadn’t He Referred Me to a Specialist Years Ago?
I think my chin hit the floor. Why hadn’t he done that initially when I was a young girl? Why did he wait so long?
So, about ten years too late, I was referred to a specialist. Based in Edinburgh, he was a well-known and highly thought of scoliosis specialist throughout the world.
When I saw him, he told me that he could do nothing to help me. My parents were with me at the appointment and my Mum asked him if he could have done something to help when the scoliosis had first developed. He replied that he couldn’t answer that question because he hadn’t seen me then.
My Pain Became Worse
A few years later, my back pain went into overdrive. When I was 25, the muscles in my lower back went into spasm and I couldn’t move. My back felt as though someone had placed a heavy weight on it. I couldn’t stand up because that heavy weight was blocking any movement I tried to make.
I was living with agonising pain from that point on. My GP referred me back to the specialist who said that the muscles badly needed to rest. I was put into a plaster cast to take some strain from my back and he told me to have complete bed rest. He said that the only time I should be on my feet for the next six weeks was to go to the toilet. His team at the hospital then moulded a body brace for me. The brace wasn’t to correct my scoliosis. It was simply to give me support.
I wore the brace faithfully for the next few years. It helped me to get back to work after 7 months of being off sick. I managed to get another couple of years at work wearing it until my pain eventually got the better of me again. At 28, I had to take early retirement.
My Scoliosis is More Than a Cosmetic Problem – it Has Affected My Life
Young people can often feel very self-conscious anyway, but I can remember feeling very aware of my strange shape. I was probably very socially awkward due to it. But scoliosis is so much more than a cosmetic problem.
I have constant disabling pain in my back and rib cage which ranges from aching and burning to nerve pain and agonising muscle spasms. I also suffer a lot from sciatica, probably due to muscle spasms trapping nerves. My pelvic bones at the right-hand side sit higher and are pushed further out than the left. My ribs have also been badly affected. On the right-hand side, they sit much lower than they should, almost sitting on top of my pelvis. The pain from my bottom ribs and pelvis is excruciating at times. It feels as though that entire side of my body is being squashed down and I am unable to straighten up properly.
I have never blamed my parents, but I know they felt guilty that they hadn’t questioned that doctor’s knowledge about scoliosis or asked for a second opinion. But back then, in 1976, people really didn’t question doctors.
It’s Important to See A Scoliosis Specialist Quickly
Time is of the essence when a young person receives a diagnosis of scoliosis. Seeing a specialist could potentially change their life. It’s important to act quickly while young bones are still growing. A specialist might decide that a brace could be worn to prevent the scoliosis from developing further or in some cases, they may decide that surgery is required.
I’ll never know if wearing a brace at a young age could have helped me or if surgery might have been suggested had I seen a specialist when I was a child. It possibly wouldn’t have been a viable option anyway but I should have seen a specialist rather than an orthopaedic surgeon who knew nothing about scoliosis.
Hopefully, nowadays, a surgeon would never say that a youngster’s scoliosis is only cosmetic. And hopefully, no surgeon would wait for ten years before admitting that they don’t have adequate knowledge. They need to send an urgent referral to a scoliosis specialist. By doing this, they will give their patient the best chance for a better future.
Please share my post to help bring more awareness.
#BackingScoliosis
Further information and support can be found at The Scoliosis Association UK
I think you’ve done well giving your “back story”, Liz.
I’m so sorry for what you went through as such a young kid, being diagnosed age 10 but not getting the help and support you should have had. A cosmetic problem, and to gain wait so nobody else would notice? That’s disgusting. Makes you wonder if that guy ever went to medical school.
I can’t begin to imagine the extreme pain you went through, and for so many years, while trying to get by enough to continue working.
You’re right about feeling that you can’t really question doctors. And it’s not just a personality thing either with needing the assertiveness; as the years go on there’s a lot more awareness and flexibility and the vibe that you can question doctors, but only so much. They – along with surgeons and specialists – are revered and almost god-like, and they always know best (they don’t, of course).
I’m angry for you for when you were so badly let down, though I know it doesn’t help to look back to that time and wonder ‘what if’. I wonder in a similar way about my bowel stuff age 19; if someone had helped me instead of fobbed me off, maybe I wouldn’t have lost everything, maybe I wouldn’t have paid for the surgery that sent my health down the toilet, maybe I would still have my large bowel and not a stoma bag. It doesn’t help to wonder, but sometimes it’s hard not to. But then you could make something good come from an awful situation – raising awareness, like you do so incredibly well – and urging others to be more mindful of a condition like this, of the need to see a specialist as soon as possible.
Fantastic post, Liz 💜💙💚💛
Caz xx
Thank you, Caz.
You’re right, it doesn’t really help us to always think ‘what if’ but I guess we wouldn’t be human if those thoughts never crossed our minds. And I guess that by talking about our health issues the way we and other chronic illness bloggers do, we’ll hopefully help someone and turn our negative into a positive. At least that’s what I hope.
I’m sorry you’ve had to go through so much and received such awful treatment! I have scoliosis myself, that is caused by the muscle weakness. My discomfort was bad and organs were being crushed so much that at 11 years old I had surgery to place spinal rods and fuse my spine. I’m still not fully straight, and have the wonky hip thing which you mention.
I didn’t realise you had to have scoliosis treatment. You must have been in a lot of discomfort and pretty scary having to have major spine surgery at just eleven years of age. I am fortunate in the respect that it’s the lower end of my spine that’s affected, so my organs haven’t been impacted.
Thanks for commenting, Gemma.
I didn’t really think about it much at the time, being young probably helped. I’d be terrified now!