Medical Negligence, Denial & an Intensive Operation. This is our Story. 

I’ll never forget our first appointment in October 2022, with the orthopaedic specialist who was to treat my son’s scoliosis. He told us: “We need to operate sooner rather than later, otherwise he will end up with health issues and deformed”.

My son was 13 years old at the time, and only one year earlier his curve had been 25 degrees and considered mild. Now it was around 60 degrees and within the surgical range. How did this happen so quickly? I was in shock. 

My sons x-ray's in August 2021 & March 2023 before surgery 

The surgery proposed was a spinal fusion – the “golden standard” medical treatment for scoliosis curves over 45 degrees. Spinal fusions aren’t for the faint hearted. And I was faint of heart – the idea of cutting into my son’s spine and inserting metal pieces – was just too much. (I’m sure in the future, when medical technology is very advanced, we will look back and consider this barbaric).

I straight away went into denial. I was hoping deep down prior to the appointment, that the specialist would say that everything was fine and that we could just continue with ‘scoliosis specific exercises’. These exercises have roots in a European method for treating scoliosis known as “Schroth”. In certain cases they can halt and even reduce spinal curvatures.

Wishful thinking. Once a curve is more than 45 degrees, it’s highly unlikely that bracing or Schroth exercises can prevent it growing. Over 45 degrees, it’s also certain that it will continue to progress, especially if one is still physically maturing, as hormones fuel the curvatures growth. According to the specialist, my son still had 18 months of growth left.

On the car ride home, I checked in with him. “Are you okay?”

“Yes mum. This is what I knew would happen,” he replied.

By this stage, when we received the news about his surgery, his spine had also started to rotate and he had developed a visible shoulder hump, which really bothered him. He wanted it fixed, and as soon as possible.  

Medical Negligence

In August 2021, during Melbourne’s extreme COVID lockdowns, my then 12 year old son started experiencing back pain. We were sent by the doctor for a spinal x-ray, which came back along with the dreaded diagnosis of scoliosis. He had only one curve at that stage, and it was considered “mild” at 25 degrees.

Little did I know at the time that “most cases of scoliosis are mild, but some curves worsen as children grow” - Mayo Clinic

He was just hitting puberty. No information sheets were printed, as doctors commonly do for new diagnosis. No review appointments were set up. Instead, I remember it being rushed. We were referred to a general physio who worked at the same clinic, who was supposedly very good with scoliosis. In reality, he had no specific training in scoliosis. I was only to find this out later. 

At the time, I was blissfully unaware that scoliosis can progress at fast rates, especially during puberty, and I thought he just had a "mild" case, that could be managed by the physio.

Risk Of Progression Of AIS

Diagram courtesy of Scoliosis Australia

Scoliosis During Adolescence 

Adolescent idiopathic scoliosis is the most common form of scoliosis which has onset just before puberty. According to Paul Sponseller, M.D., paediatric orthopaedic expert and director of the Johns Hopkins Division of Paediatric Orthopaedic Surgery, “If scoliosis can be diagnosed before the child has a growth spurt, the provider can determine a treatment plan that prevents a bigger curve from forming during times of growth.”

Based on hundreds of forum comments I’ve read since his diagnosis, it seems that many general practitioner doctors are not correctly trained how to handle scoliosis and can often take a las a faire approach (i.e. wait and see if the curve grows). Even though medical data shows at certain ages, such as ages 10-12, when my son was diagnosed for example, there is a 60% chance of curvature growth if it’s already 20-30 degrees, and 90% chance of growth if it's 30 degrees or more!

In our case, we weren’t even told to come back to the doctor for a review, or that my son would need another x-ray at any point. Bracing was never mentioned, which is one of the main treatment methods at this age. My son was simply referred to a general physio who was supposedly excellent with scoliosis.

The Sham Physio

Over the course of seeing this physio for almost one year (1-2 times a week except for a few weeks here and there), we were never told to get another x-ray or referred back to the doctor.

I will give him credit for helping him manage the pain well, and keeping him more fit/active through the Pilates exercises he arranged at his clinic. But none of this is called managing scoliosis, not in medical or holistic terms. Anyone with proper training would have been able to tell it was only getting worse, and needed specialist management.

Riggo Concept Scoliosis Specific Exercises (image taken from SimPhysio)

It was only after I took him to an osteopath for a different issue, and then later another physio, as I started to feel dissatisfied with the first, were the alarm bells rung. The osteopath said we need to get an x-ray right away for his back, even though we had come in to see him about his knee.

The new physio who we were trying for his back, also pointed out he needed to get another x-ray and see a specialist right away. She was visibly worried. She even called our doctor (around that time we had moved clinics to a smaller, less rushed one), to get the ball rolling. 

The New Doctor

We had asked this new doctor for an x-ray prior to seeing the new physio, at the prompting of the osteo. She had said that she didn’t want to send my son for another x-ray because of radiation concerns, if it wasn’t necessary, as he “looked” fine. This was despite the fact that his last one was a year ago, it was 25 degrees at that time, which warranted a review in and of itself, and even I could tell his actual back did not look okay at all!

I challenged this GP, about her refusal to do the x-rays, and asked what should we do, as I wasn’t happy to just leave it. She then said she could refer him to the scoliosis clinic at the Royal Children’s Hospital, and they could decide if he needed an x-ray! This meant more weeks and even months of waiting, as it’s the public system.

In the meantime, the Royal Children’s never received her referral, and we were just waiting to hear back about an appointment for weeks, thinking the delay was due to it being the public system. I called them eventually to see why it was taking so long and they didn’t have any record of the referral. It was then, that we started looking for a new doctor. Third time lucky as they say!

During this waiting period, was when we saw the new physio. She said there’s no time for the public health system anymore, get to a specialist right away! 

Schroth

Around this time, I had also finally started to do my own research online – which was long overdue. My son’s back was starting to look very weird, and he was complaining more about pain, and I had just come across Schroth. This was before he had his second x-ray - before we knew the degree to which the curve had grown.

Through my research into Schroth, I happened upon the Kew Scoliosis Physiotherapy Centre in Kew, who teach the Rigo Concept SSE/Scoliosis Specific Exercises (an offshoot of Schroth). This has sound medical basis, but I’d venture to say most General Practitioners don’t even know about it. 

I’ve seen on forums that it’s helped many young people stop and even reduce growth curvature, sometimes in combination with bracing.

I didn’t know at the time, but the Kew Physio Scoliosis clinic worked with one of the top paediatric scoliosis orthopaedic surgeons in Melbourne, Dr. Gary Nattrass, who would later come to do my son’s surgery.

We made an appointment with the Kew Centre in the meantime, and they were extremely professional and helpful. They knew what they were talking about. They did a full scoliosis assessment for 1.5 hours. I finally felt like I was in the right hands.

After seeing his x-ray results, they immediately said we need to see an orthopaedic specialist and referred us to Dr. Gary Nattrass.

Inquiring on Facebook forums about Dr. Nattrass

One of the things they picked up in their evaluation was his high score on the Beighton hypermobility test. He had also been increasingly injuring himself (not related to his back) during sports. I noticed some other things and I started to connect all the various issues together and wonder if there was an underlying cause.

On a Facebook scoliosis forum I found out one of the underlying causes of scoliosis is connective tissue disorders. This later would play a very important role in discovering what may well be the cause of his scoliosis. None of this was ever talked about or flagged by any of the GP’s we had seen, or even by his scoliosis specialist. No-one had looked at the 'bigger picture' and connected the dots, until I raised the flags and pushed for further investigations. Each professional had been very focused on the specific symptom they had been treating. 

My Denial

For a few months, while we were waiting for his surgery, I went into denial and kept imagining I'd find a better solution. A few days before his surgery was scheduled, I found out about  Apifix, a newer and less invasive surgical alternative to a spinal fusion. I hurriedly contacted them, only to find out that it wasn't viable for his curve. I had also read a medical paper about higher rates of complications after. Not to mention, it wasn't even available in Australia.

Additionally, newer surgical techniques, including VBT (vertebral body tethering), are now available (although it wasn't suitable in our case). Through my research I found out that  diet and physical exercise can influence the development and progression of some forms of scoliosis. I had not heard this from any practitioner we saw. 

For anyone exploring these alternative surgical options, I highly recommend a Facebook group called " Dr. Derek Lee's Ultimate Guide to Navigating Scoliosis Treatment/Research ". There he publishes the most up to date scientific information on new surgical techniques and interviews top surgeons and experts from around the world.

Pre-Surgery Scares

Most parents are terrified of their child having a spinal fusion. I know I am not alone after speaking with, and observing, so many parents via support groups online. The founder of Apifix, came up with the idea for this very reason, after dealing with so many horrified parents. 

Leading up to the surgery, my anxiety levels were through the roof. Some of this was admittingly related to Facebook scoliosis support groups I had joined. What I eventually realised was that the worst cases of complications come up, and the questions related to these complications - so they can give a really scary and somewhat skewed vision of what the surgery can look like. I had reached out to some Australian parents of children who had surgery and they all reassured me that the surgery went well and their children were doing really well now. That definitely helped. 

My son’s back post surgery

The Surgery

The day actually arrived and I couldn't believe it was happening. Spinal fusions typically take 6-12 hours to perform (sometimes even longer is needed), require at least 5 days supervised recovery in hospital, and then 4-6 weeks at home with very limited activity, including no school.

I'll never forget when he first woke up, with very puffy eyes and blurry vision, an IV in his neck with blood stains, catheter, and pain meds hooked up via a machine. He was very disorientated and could barely speak. My heart absolutely broke and I burst into tears the first moment away.

The surgery went well, and that was the main thing. They had managed to de-rotate as much of his spine as they could and straighten the thoracic (top) curve. 

Spinal fusions entail cutting into the spine and inserting a metal rod and screws to straighten it, and then grafting bone in-between the vertebrae, so the bones and vertebrae in the spine “fuse” and become one solid block – that can’t bend and twist anymore.

Because it immobilises the area of the spine that it's performed on (i.e. you can't bend that part of the spine anymore which has various implications for everyday life), any good spinal surgeon will try do as least number as vertebrae as possible, while still attempting to fix the overall problem.

In my son's case, the lower curve was considered compensatory - it was curving to compensate for the top curve (special bending x-rays are performed to confirm this). So it was best to leave it. Indeed after surgery, the lower curve was reduced to half what it was.

However, because the lower curve still wasn't completely straight after his operation, my son looked very lopsided. I was not aware that it can take months for the body to re-adjust to the new position of the spine and so I was a little shocked. I wish someone had explained this properly before.

It should be noted that it's now two months post op and my son is less lopsided. To further straighten out the bottom curve, he's doing scoliosis specific physiotherapy (Rigo Method SSE). This is on advice of his surgeon.

Recovery

The day after the operation, patients need to stand up and take their first few steps. The idea is to get them moving as soon as possible. By the end of the hospital stay they need to be able to walk up and down the hospital corridor, and up a small flight of stairs. The first time standing up is huge and most patients will throw up, like my son did. It was not fun to watch, but it means progress.

Each day, and then week, feels like huge leaps are taken in recovery. From not being able to turn himself over in bed, to being able to stand up without vomiting, and then being able to take those first few steps, to eventually walking unaided, it all felt pretty big.  

My son recovered really well and the nurses were all very impressed with him and his determination to get walking as soon as he could.

The pain meds are very intense, especially those first few days, and besides the pain from the actual operation, patients have to deal with the extreme nausea, headaches and other side effects from the opioids.

It all becomes a balancing act between managing the spinal pain (which is extremely sore) and the side effects from the pain meds, which some people are extra sensitive to, like my son.

Once you're sent home, spinal fusion patients need full time care for the first few weeks. The first week or two is especially intense, and one won't recognise their child from one week to the next in terms of how far they've come. 

Two Months Later

It's now two months since my little boy had his surgery and I'm very proud of how far he has come. He is back at school, cooking again (his favourite hobby), and able to go out with friends. There are still certain restrictions one has to observe for up to a year, around sports and certain physical activities, but basic day to day activities can be performed again with ease. 

It hasn't been an easy journey by any means, but he's come so far. If this article has helped just one person with more knowledge about how to manage their scoliosis, or with preventative awareness, then it is "mission accomplished"! Please feel free to comment, share knowledge or ask any questions, below.