Amy’s Story

My Experience With Bertolotti Syndrome

Growing up in Australia, I was always an active kid. Doing everything from gymnastics, to karate, to netball. No matter what, I never stopped moving. Living.

In late 2017, my first year of high school, I joined the netball program at school. I was so excited to try this new sport I had heard all about. It involved plenty of fitness and teamwork, which I both really enjoyed. At only 13 years old I had felt somewhat late joining the sport, as all my peers had been playing throughout their childhood. This made me push and try even harder, knowing I had plenty to catch up on.

Mid 2018 I had finally grasped the concepts of the sport and felt as if I was an important part of the team. I was the top of my class in fitness, always being one of the last ones running during shuttle runs. Training multiple times a week with my friends, always having some new technique or concept to learn. It was the fittest I had ever felt. During this time, I was also dancing, which was something I had never stopped doing since I joined my first dance class as a little kid. I was in the academic program in school, always chasing for the top marks and eager to learn. My world was my oyster, as they say. I had big dreams, so many options and avenues to choose from. Because of that, I was always so indecisive with what I wanted to do in the future. Become a dancer? Be a midwife? Zoology sounds interesting!

Everything changed during the end of 2018. I had first thought I was injured. Maybe I fell out of bed one night and didn’t notice? Did I bump into something recently? All I knew was that my back was in constant pain. As the days turned into weeks, the idea of it being more of a serious injury became plausible. I would come home from school and collapse into bed. I would consistently complain and wine to my parents about my back, which they would respond in saying “You’re young, you’ll be okay” or “Stop over exaggerating”.

From their perspective it made total sense. I had no recent fall or incident, I was young, heathy and fit. I shouldn’t be in any pain. Yet I had chronic nerve pain in my lower right side of my back and, my mid to lower back muscles were always sore and tight.

Sometimes during flare ups my back would start to spasm and I’d be bedridden. After months of wining, we finally went to the doctors. The doctor ordered an xray and ultrasound. I was seriously expecting a fracture to come back. Instead, when I went in for my results, my doctor looked bored and half explained my report but told me it was nothing to worry about. She suggested I take some paracetamol, and I’ll be back to normal. That was not the case.

Being active was no longer an option for me. I reluctantly had my mum write a note to my netball and dance teachers, explaining the situation and that I will be sitting out until all is well. I was so nervous to hand over that note, knowing all my hard work and progression with my fitness will be going down the drain, truly hoping this will just be temporary. But it was the only thing I could do.

There was no way I could be sitting in class all day AND being active, my pain tolerance wouldn’t allow it. Sleepless nights and being distracted in class due to the pain were becoming too often, and at the end of the day, my academic side of school was the most important.

It was now mid 2019 and through multiple visits with my doctor, I managed to get a referral to see a chiropractor. I thought this must be it. I had always watched the videos of them moving people in certain ways, fixing aches, and pains with one push of their hands. I was nervous but also excited, thinking this will be my last stop and all will be well. How I was wrong. The first thing he did was look at my x-rays. He asked what the doctor had told me and I said not much.

He then went on to explain that my doctor did not read my report correctly, or really at all for that matter. He broke the news to us that I have an extra vertebra (L6) that is sacralised to my right side of my pelvis. My mum and I were both shocked to hear this as the doctor mentioned nothing of the sort. So, I was like a mutant from the movies? He went on to do tests and did that knee hitting thing where your leg shoots up involuntarily. He pushed around on my back. I wasn’t the most comfortable being contorted whilst having someone push down on me, but I managed. When the appointment was over, he asked me to leave the room to talk to my mum in private. My heart dropped. When adults want to keep children out of the conversation, you know it’s serious.

On the way home my mum explained me to that I needed to get tested for MS (Multiple Sclerosis). I didn’t know much of the illness at the time, but I knew it wasn’t good. I found comfort in “Dr Google” as I didn’t seem to have many of the symptoms, so I tried to focus on the adjustments that were done, to me to see if they worked. They did not. The pain only increased and I started to feel a tingling numbing sensation down my legs. I explained this at my follow up appointment and my chiropractor did what not most would and stepped away. Instead of him sucking my mum’s purse dry, he referred me to his doctor. I was bummed out that this wasn’t the end of it all but also hopeful this doctor would help.

At my first doctors appointment I explained everything I could in great detail and he listened attentively, which I feel most other doctors don’t do. He ordered me an MRI to rule out MS and referred me to a Physio. No signs of MS came from the MRI, which was a relief, but the Physio didn’t help, as they just wanted to me to increase my exercise and get stronger. Did they not realise that was causing me pain in the first place?

I went back to my doctor on multiple occasions, trying different things such as muscle relaxants for my muscle flare ups, which only made me drowsy. My doctor decided to refer me to a back surgeon as he did not know what else to do.

He said I may be too young to have any surgery, but a specialist’s opinion would be beneficial. Being in the public system here in Australia meant I had to go on a waiting list and get accepted. I was denied. The surgeon must have skimmed over my report as they mentioned my scoliosis was too minor of a degree for them to consider seeing me. I was not wanting to see them for my scoliosis, but for my back condition no one seemed what to do with! We gave up on that avenue as I was worried if I was accepted, they’d push surgery onto me, and I wasn’t ready for that.

I went down the route of trying Bowens Therapy, which is a more holistic approach. The Bowen’s therapist could tell right away that there was restrictive movement on my right side. She massaged and bent me unusual ways and to no avail after many appointments, nothing worked.

Nothing seemed to permanently work. I would gain temporary relief from a massage and rest, but as soon I was active again, all went out the window. My activity came to a complete stop. I had already left dance to focus on netball, but no occasional netball game or fitness class was doable. I still remember the last game I played, and it was ironically when I was sick with glandular fever, whilst on a bus tour. I felt so left out and had a rush of energy one day (probably from all the medicine I was taking) so I decided to join in a game. That was definitely a silly mistake, as I later broke down in the bus for not being able to compete to my full capability.

The school holidays came and went, and I knew with this new year I had a big change to make. It was now the start of year 10 in 2020, and I made the gruelling decision to quite netball. Walking up to my netball teacher with a note from my parents, stating I am leaving the program, was probably one of the toughest things I had done up until then. Not because I was unsure about my decision, but because I knew my teacher had already lost students to quitting last year and did not want to see me go. She was angry with me, and I felt like a scolded puppy. I went to my friends and just cried. Cried for being felt as if I was doing the wrong thing and cried because all that enjoyment and effort of playing netball was gone.

As P.E was still mandatory, I was forced to sit on the bench and watch my peers have the privilege to complain about doing sport. They were envious of anyone on the bench, always finding an excuse and using a forged note to get out of participating. My teacher had assumed I was just the same. After many side eyes and accusatory mumbles, I had my mum write a detailed note explaining my situation in full. I hadn’t mean to cry and break down, but as I was giving her the note and explaining it all, I did. I still feel guilty now, her face dropped and realisation came over her. I knew she felt guilty. She apologised for ever assuming otherwise and from then on, always made sure I was accommodated for.

Nothing much had progressed until I was put on a waiting list, to which I was accepted into a pain management program. My doctor decided that I had started to limit myself in what I did, due to the assumption my back would not be able to handle it. I did absolutely no exercise and didn’t go out with friends as often, which was whole heartedly affecting my mental health. It was now 2021 and I was in the middle of my first year of ATAR (Senior academic program to get into university) and my mental health was at an all time low.

The program involved two visits, one with parents and one without. I was extremely nervous, but I had found comfort in the fact that everyone there was in the same boat as I. It was only a small room of about five other people. We all introduced ourselves and our pain, to which we found a common denominator. That no one had found a way to permanently alleviate their pain. The second appointment was just as nerve racking, especially because it was my 17th birthday and I was spending the day in hospital. Even though the time spent there wasn’t long, I walked out of there with a different and new mindset. That I can’t let my pain dictate my life and that I should be able to do what I like, without being so hesitant. Everyone else and I had also expected a new avenue to go down as the leaders told us they had medical connections. To our disappointment, that ended up not being the case, but I still don’t regret doing the program.

I carried on through life, focusing on my studies and mental health. My final year of school came around, and I was accepting and content with the way I was. It wasn’t until my final, most important, exams came up at the end of the school year, did it all change. All other year 12s had finished the school year early, but us ATAR students stayed back to study for long consecutive hours. This meant a long time sitting with no breaks. The two-week period of sitting multiple long hour exams arrived and I was more focused on heightened pain I was experiencing, than my actual exam paper. I could never get comfortable in the seats, and I was not allowed to just stretch my back or lay on the floor. I could have gone through the process of getting a medical exemption to due so, but it didn’t even occur to me until the exam period started that I should have. I had known that sitting for long periods of time wasn’t good for my back but not until I was doing it more often than usual, did it truly affect me.

My exams were finally over, and I started my first job the very next day. I was a cook at a fast-food Mexican restaurant. It was an interesting first job, getting paid minimum wage but felt as if I was working in the back of a five-star restaurant. That’s how my manager saw it anyway with the amount of pressure and stress he was putting upon us cooks. The thought hadn’t crossed my mind when I applied, but it was a very physical job. After the first week I had no choice but to my wear my back brace the entirety of my eight-hour shifts. It was especially uncomfortable in the Australian summer heat and having to readjust it a million times, but my back needed every bit of help it could get.I was carrying heavy cartons of food, bending down often, hunched over the grill and on my feet always moving for every shift, four days a week. I was only part time but even I knew this wasn’t going to work. I went down to three days a week which helped slightly but did not help my bank account. If it wasn’t for my perseverance to save as much as I could, it would not have been enough.

My first year of university was coming up and I was unsure as ever. I had managed to get into my dream course of Environmental Science majoring in Wildlife Biology. I knew before applying it was a both hands on and theory-based learning experience and the resulting job out of it would be the same. This scared me as I wasn’t sure if I was able to complete this study and still earn money with my back. I also wasn’t 100% set on this being my career, as I loved learning about it all but didn’t know if I would actually enjoy applying those skills. I ended up withdrawing from the degree and a few months later quitting my job and then working my new job with my dad.

My job was to ready items of work (Hi-vis, PPE) clothing for sewing or embroidery, fold many clothes and package up orders. I was casual so I was not always needed, which allowed time for me to rest my back. I still always wore the back brace but because my dad was my manager, breaks were warranted if I needed them (which I did). There were times in which it would get really busy,and I would be working multiple full-time weeks in a row (40 hours). This absolutely killed me. I felt nauseous constantly from the pain and didn’t want to have a life outside of work. It really hit me then as I realised that this would be my reality one day. One day I won’t have the luxury of having little to no living expenses and I’d have work full time. This made me want to do something as the worry never went away.

In late 2024 work slowed down and I wasn’t needed anymore. I knew it was time for a change. I scoured the internet for careers that seemed suitable to me for my condition, and I came across a Data Analyst. Most seem to be able to work from home and if they weren’t, they were sitting in an office chair. Even though sitting prolonged times for me is still aggravating, there wasn’t much choice elsewhere. I applied and started an online university degree and began studying. I knew I still needed an income but with now studying full time, I didn’t know how to achieve that. My dad suggested I apply for Youth Allowance which is when the government helps out full time students financially. I did just that and as much as it’s not a great deal of money by any means, with my savings and lack of expenses, it was enough.

Fast forward to the end of 2025 and all seems to be going okay. Okay in the sense that I had learned to live with my pain. I knew that if I went out with my friends, it couldn’t be into the late hours of the night like most young adults, I would always go home early, seeking relief. If I went out for lunch, the chairs must have a back in them, or I’d be unable to sit for longer than 10 minutes. I had tried and failed at starting at gym, soon realising even if I just went once a week, my back could not handle it. I got a portable bath for our bathtub-less house and would use it often for any back flare ups, along with magnesium to help the muscle. I also bought a tens machine which aids in temporary muscular relief too. But nothing seems to fix the constant nerve pain unfortunately.

Many people started to forget about the struggles I dealt with or had thought it simply went away. I had stopped speaking about my back because it was becoming tiring for me to have to re-explain it all the time. If I left early, I’d blame it on being tired, not wanting to bring my condition into the conversation. I had also felt ashamed as there were people out there who didn’t have the ability to even walk or move, and here I am complaining about my back. I felt as if it wasn’t my place. For example, if I was on public transport and the only empty seat free was for people with disabilities or pregnant people, I did not take it. I did not feel entitled to anything of the sort.

This mindset started to change when my dad’s knee started to hurt and become a chronic pain in his life. I noticed how he would speak on how the pain was constantly affecting him and that he no longer could do everything he use to. My family would exclaim how that was not normal and unfair in what he was dealing with. Something in my head clicked as I realised, this applies to me as well. I started to dwell on my daily struggles and what I considered my “normal.” I decided to write down a list of things that I do and experience differently compared to the average person, because of my back. It was an eye opener for myself as I did not realise the length of said list. Just to name a few but having sit down in the shower to wash myself, always trying to find relief such as crouching or contorting my back, being tired very often and not wanting to get out of bed, sleepless nights due to pain, unable to carry anything heavy, not being able to have a long day out, unable to exercise and never truly comfortable as I am always in pain. It made me want to find help. It made me want to find answers.

I did more research on my condition and decided to search for Bertolotti Syndrome online. I wasn’t too sure what I was going to find but I found a reddit group. This was a big deal for me as I had never known or even seen someone speaking about my condition, and here there are a bunch of other people with my same struggles. I since then joined an Australian Bertolotti’s Syndrome Facebook group to which I have now learnt so much about my condition. It has created a new spark in me to know that I am not alone in this and to know that possible treatments are available. I am going to try again in finding a specialist in hopes for possible treatments, even though there are not many out there to do begin with, due this condition being so unknown. I hope my story and others like my own can help others who are in pain and inspire orthopaedic surgeons and medical professionals to study this condition further, aiding in the creation of new treatments and advocating for their patients.

© Amy Lukan