Rachel M. Beard

Content warning: This article includes descriptions of medical procedures and discussions of suicidal thoughts.

The sky over the Royal National Ortopaedic Hospital is gray. It’s not raining yet, but it is may as well be. It’s late October, and the trees outside are just turning yellow. The glass buildings of the RNOH look like spaceships, touched down in the middle of a concrete parking lot.

In one of the waiting rooms, a young girl watches with wide eyes as a police protection officer scouts the area. She’s never seen a gun before, and this officer has one strapped to his hip. Her mother is staring, too – because she knows exactly why armed security would be wandering the halls.

Inside one of the pediatric surgery suites, a 12-year-old girl is unconscious on the operating table. The surgeons above her are inserting 8-inch titanium rods into her spine. They’ll break her vertebrae as they go, creating bone grafts to ensure the vertebrae fuse together around the rods. One of the surgeons monitors her nerve responses to make sure they aren’t damaging her spinal cord as they work.

And they’ll work all day – the operation was originally scheduled to last one hour, but it ended up lasting seven when they realized how severe the curve in her spine was.

Somewhere else in the building, the girl’s parents sit waiting for the results of the surgery. The couple divorced six years ago – but they had always been united in supporting their children. Their eldest, a 14-year-old, has struggled since being diagnosed with dyslexia. As an adult, she will attribute her acceptance of the condition to her family’s support. Still, it’s not hard to imagine there were some tense silences in the hospital that day.

Finally, a surgeon will enter the room – accompanied, no doubt, by one of those armed police officers.

“The surgery was a success,” she’ll announce to Prince Andrew and Sarah Ferguson. “We’ve moved Princess Eugenie to intensive care if you’d like to see her now.”

Scoliosis affects around seven million people in the United States, most of them girls between the ages of 10 and 18. Around one quarter of people who are diagnosed will end up requiring medical treatment – usually surgery.

The severity of each case is determined by the patient’s age and Cobb angle. The Cobb angle measures how far the spine has curved by comparing the highest and lowest vertebrae that has bent out of shape. The patient’s age is then used to predict whether the curve will continue growing.

A 30-degree curve found in a 26-year-old, for example, is no cause for concern and will likely go untreated.

A 30-degree curve in a 10-year-old, on the other hand, is highly concerning. There is a good chance the curve will become more severe as the child grows.

Scoliosis is considered severe if the Cobb angle reaches 40 degrees or higher. These are the cases that are often treated with surgery – like Princess Eugenie’s – and with good reason. Untreated scoliosis can cause a wide range of other health issues. Even with a mild curve, patients may experience chronic back pain as their muscles adapt to the curving vertebrae and tension migraines as their spinal cord is pinched or compressed. Some patients may even have an “S” shaped curve instead of a “C” shape, resulting in two Cobb angle measurements and potentially more severe symptoms.

Severe cases can have a serious impact on the patient’s quality of life.

A curved spine may cause the rib cage to curve with it, compressing the patient’s heart and lungs. Continued pressure on the spinal cord can cause severe pain or nerve damage. Most patients with a severe curve will experience reduced mobility for the rest of their lives.

Fortunately, spinal fusion surgery is considered a very successful treatment for severe scoliosis. Surgeons will usually straighten the spine as much as they safely can – and once straightened and fused together, the curve usually stops progressing. After the patient recovers from the operation, they go on to live normal healthy lives without worrying about spinal deformities or Cobb angles.

Right?

Successful doesn’t always mean perfect.

The long-term side effects of spinal fusion for adolescent idiopathic scoliosis (AIS) patients are not well researched, and what we do know is not encouraging.

Back pain, for example, can actually increase after surgery. Reduced back pain is commonly reported immediately after the patient has recovered – but it can increase above pre-fusion levels as early as a decade after the surgery.

Fusing the vertebrae together and adding titanium rods to the spine creates pressure on the un-fused vertebrae in the lower back. This can cause disk degeneration, usually at a much higher rate than in patients who were not operated on – likely contributing to the increase in back pain years after surgery. Disk degeneration appears to be common, occurring in as many as half of all patients a decade after their operations.

Most people who receive this surgery are teenagers. This means that by their early to mid-20s, they may be struggling with a condition that normally impacts people over 40.

Current data suggests that the fused section of the spine can also deteriorate with time. Although patients’ Cobb angles usually remain corrected, they may still develop other spinal deformities – such as vertebrate rotation – just 12 years after their operation. These changes vary from case to case, but the data is statistically significant enough to suggest a pattern.

Patient mobility also appears to worsen over time. In the short-term, patients may report better movement after surgery – but their risk of developing a disability will increase over time.

The long-term psychological impact of the surgery is even less understood. What little research does exist suggests significant damage. One third of AIS patients who underwent spinal fusion between 2012 and 2020 reported worse mental health after the surgery. An estimated 20 percent of spinal fusion patients develop post-traumatic stress disorder (PTSD) after surgery, even if they had no prior mental health issues.

Princess Eugenie was no exception. She received her diagnosis when she was just 11, and the announcement left her “reeling”.

“I remember putting cream only on my scar for years after the operation,” she said during an interview in 2018. “There was an unexplainable feeling – like a kind of emptiness.”

Although surgical methods have evolved over time, spinal fusion has been used to treat scoliosis since at least the 1950s. We know that scoliosis is common, and we know that severe cases have to be treated before they worsen. Our understanding of the negative consequences of surgery is incomplete at best, but we can still recognize that our current treatment plan is imperfect.

So why haven’t we come up with anything better in the last 75 years?

In May 2012, a San Antonio jury ruled that 45-year-old flight attendant Julie Ann Bronson would serve probation for the crime of hitting two young girls and their mother with a car.

Bronson has no memory of the accident, which occurred in 2009. She only remembers waking up in a jail cell, barefoot and still in her pajamas. Police officers told her she was being charged her with intoxication, assault, and failure to stop and render aid.

Bronson was horrified – and confused.

The night before the crash, Bronson was home alone. She had just returned from an international flight and was disappointed that her husband, a pilot, couldn’t catch a flight home. Before going to bed, she had a few glasses of wine, and – crucially – a sleeping pill.

Zolpidem has been on the market since 1992, when it was known as Ambien. For two decades, it was a standard prescription for insomniacs across the country. Nearly 40 million prescriptions were dispensed in 2012. It was considered safe, reliable, and effective.

Then, people – most of them women – kept getting into early morning car accidents after taking the drug the night prior. They showed symptoms of intoxication, including confusion and slurred words. They often had no memory of getting into their cars in the first place.

“Sleep driving” was happening all across the country, and Ambien was the common factor.

Bronson initially faced a sentence of 10 years in prison. But the jury acknowledged that she never intended to drive in the first place and let her off with probation instead.

Not every sleep driving case ended that way. Some car accidents had fatalities, and many judges outright dismissed the concept of sleep driving entirely in their sentencing.

In 2013, the FDA finally decreased the recommended dosage of Ambien for women from 10 milligrams down to 5.

“For zolpidem products, data show the risk for next‐morning impairment is highest for patients taking the extended‐release forms of these drugs,” the FDA said in their report. “Women appear to be more susceptible to this risk because they eliminate zolpidem from their bodies more slowly than men.”

The recommendation came over 20 years after Ambien hit the market – 20 years too late for women like Bronson and the family of the 18-month-old girl she hit with her Mercedes.

Women’s health is dangerously underfunded, and women around the country are paying the price for it.

Pharmaceutical companies often only test their products on men, meaning that drugs on the market may be – at best – ineffective on female patients. At worst, they can be downright life-threatening.

NIH disproportionately invests resources to diseases that primarily impact men. As a result, conditions that mainly impact women – such as endometriosis and migraines – are not well understood and do not have well-developed treatment plans. Even something as simple as heart attacks are misdiagnosed in women far more often than they are in men.

When we do invest in women’s health, the focus is often on conditions that impact their breasts and reproductive organs. This so-called “bikini medicine” approach has actively harmed women for decades, preventing them from getting mental health diagnoses, proper treatment for strokes, and even – as we saw above – getting them into car accidents.

Scoliosis falls well outside the bikini line.

Although it is equally as common in both genders, scoliosis is 10 times more likely to become moderate or severe in girls. The overwhelming majority of scoliosis cases are adolescent idiopathic scoliosis, or AIS, meaning they are diagnosed in teenagers and the cause of the curve is unknown.

Though our knowledge of scoliosis has grown in the 21st century, it is still an under researched condition and what research does exist is not of the highest quality. We still don’t know what causes scoliosis or why it’s more severe in girls. The best treatment we have is an invasive surgery that was invented in 1955 and often has long-term consequences on the patient’s quality of life. The only other option is a back brace, a treatment which dates back to at least the 16th century and has at most a 50% success rate.

We’re not just talking about women. This is a condition that mainly impacts girls between the ages of 10 and 15.

Teenage girls are already facing a mental health crisis. Analysts have been quick to call out social media for increasing body image insecurities and contributing to higher rates of depression among teens, while other think pieces have blamed everything from COVID lock-downs to biology. But when a group of researchers asked teenage girls why the crisis was happening, their answers were very telling.

“When people think that insecure girls is just someone who thinks, ‘oh, my hair isn’t good enough’, but it’s so much deeper than that,” Sunita told researchers. “And I think a lot of the insecurities within girls that they just don’t feel like… a person because of how they’ve been treated.”

The diagnosis of a spinal deformity only makes it worse.

AIS patients have reported significantly higher rates of suicidal thoughts than their peers, with female patients reporting more suicidal thoughts than their male counterparts. We already know that spinal fusion surgery can worsen a patient’s mental health and even cause PTSD.

These are girls who will grow up to be the patients in those long-term studies mentioned above. They may have reduced lung capacity, damaged cardiovascular function, and disk degeneration in their lower spine – all before they turn 30.

By not investing in scoliosis, we are failing teenage girls. We are not, as Sunita put it, treating them like people.

Princess Eugenie made a full recovery from her spinal fusion surgery and later became a patron of the very hospital where she was treated. She has been very open about her experience, from sharing photos of her x-rays on social media to wearing a custom wedding dress that showed her surgery scar.

“I think it’s cool as a reminder to say ‘yeah, you did that!’ – it’s really tangible,” she said in an Instagram video posted on Scoliosis Support & Research‘s page. “You know, sometimes, these scars are really internal, really mental things that we can’t explain. But wearing something on your sleeve like that is really cool, I think.”

Outcomes for spinal fusion have continued to improve as better surgical techniques have been developed and researchers have seriously reviewed the long-term impacts of the operation. Surgeons have also acknowledged the importance of a holistic approach to treating scoliosis instead of just looking at a patient’s x-rays for a curve correction.

The Scoliosis Research Society and the National Scoliosis Foundation continue to fund independent research into a variety of scoliosis topics, all with the goal to improve patient outcomes. NIH does not track specific funding for scoliosis, but it continues to take pediatric conditions seriously and regularly publishes articles about scoliosis.

It’s easy to think about a condition like scoliosis as a collection of numbers and data, as a list of average Cobb angles and fused vertebrae. But these are real people – real girls – who deserve to live long lives with healthy bodies and healthy minds. We owe it to them to invest in scoliosis, to improve their long-term quality of life and preserve their overall well-being along the way.

“Even if one little certain bit can be tackled,” Chloe said while talking to researchers about girls’ mental health. “[T]hen it’s one certain bit that helps, like, a person.”