In Australia, as in other countries, this “miserable minority” who experience persistent symptoms fly under the radar, suffering in silence. Perhaps it’s because there’s a lack of awareness that concussions are mild traumatic brain injuries\u00a0\u2014\u00a0that even single blows are serious and should be managed carefully.<\/p>\n
It’s possibly also because the conversation about brain injury in this country is focused almost exclusively on sports concussion \u2014\u00a0how soon footballers return to play \u2014 and increasingly the links between contact sports and neurodegenerative disease. Sifting through the statistics, though, you have to wonder why. Just 20 per cent of mild traumatic brain injuries in adults are sports-related; the majority are from falls, motor vehicle and cycling accidents, and violent assaults.\u00a0<\/p>\n
So I was completely out of my depth when I arrived at the Alfred’s emergency department the weekend after my head knock, feeling blank, dizzy and nauseous, failing dismally to follow what a nurse was saying as she walked me in for a CT scan. I was utterly unprepared to challenge my GP when she insisted, after seven weeks and seemingly no improvement in my symptoms, that I just needed to “keep resting”. Take it easy, she said, “concussions can last for six months”.\u00a0<\/p>\n
Six months? I wasn’t sleeping, and couldn’t remember ever being so exhausted. Even on scaled back hours at work I was fighting stubborn headaches and heavy brain fog; some days I was so slow I couldn’t string a sentence together and would frequently forget or fumble words, a gross feeling of pressure building in my temples whenever I thought about anything complex.<\/p>\n
The term “brain fog”, I’ve found, doesn’t come close to capturing the feeling of having lost myself, my spark \u2014\u00a0an experience of my mind as sharp and agile, able to multitask and grasp the fine threads of big ideas and the moving parts of stories… or even just remember my email address, my name.<\/p>\n
My doctor’s advice was frustrating \u2014\u00a0especially knowing what I do now \u2014\u00a0but alarmingly common. Many weeks later I’d land at a concussion clinic at a private hospital in Melbourne, and be surrounded by a capable team of specialists: a rehab physician, neuropsychologist, physiotherapist, occupational therapist, behavioural optometrist and others. With their help and patience I would spend more than a year rebuilding my cognitive capacity and sense of self, learning to overcome pain and panic, clawing my way back to full time work as a journalist, finding a path out of the dark.\u00a0<\/p>\n What I didn’t fully appreciate back then, though, was just how lucky I was. For too many people struggling with concussion in Australia, finding good care is a torturous, traumatic process that sometimes works out, but too often doesn’t, with frightening consequences.\u00a0<\/p>\n “Over the years I have seen people who just become a recluse \u2014\u00a0they end up dropping out of the workforce, they end up at home, fearful of going out because they’re afraid of their symptoms. It can be really devastating,” says Jennie Ponsford, a professor of neuropsychology at Monash University and director of the Monash-Epworth Rehabilitation Research Centre.<\/p>\n “I think the concussion conversation in Australia is mostly about sport at the moment … and that concerns me because there are many other people in the broader community who also need to have their problems addressed, where there aren’t support systems in place or good enough access to treatments.”<\/p>\n Mild traumatic brain injury, or concussion, is a disturbance in normal brain function caused by the brain suddenly moving within or against the skull, usually after a blow to the head or body. Concussions make up 85 per cent of all traumatic brain injury in Australia and there are an estimated 170,000 every year, though it’s not clear how accurate that figure is because they’re not systematically tracked and many go unreported \u2014 not everyone fronts up to GPs or hospitals for diagnosis.\u00a0<\/p>\n Despite how common they are, the pathophysiology of concussion, exactly what happens to the brain and body, remains surprisingly poorly understood. The initial knock can cause bruising and swelling at the site of impact, while the forces that shake and stretch the brain are thought to cause diffuse damage to neurons, triggering complex cascades of cellular and chemical change and tissue damage over days or weeks. This can disrupt the brain’s delicate circuitry and affect the way we think, sleep, move and feel.<\/p>\n Yet until relatively recently, concussion has been regarded as a “fairly innocuous condition”, Professor Ponsford says \u2014 football players got up off the field and kept playing, and it was assumed that “people just got better”. In the past decade or so there’s been an explosion in research, much of it focused on trying to pin down biomarkers for concussion \u2014\u00a0which usually can’t be seen on standard MRIs and CT scans \u2014 and understanding why some people experience symptoms beyond the “typical” recovery period of one to three months.\u00a0<\/p>\n And the short answer is: it’s complicated. Researchers don’t know if lingering cognitive and emotional symptoms are always the result of physical brain damage or altered connections between neural networks; whether immune cells in the brain, in some people, overreact to the injury, producing a destructive inflammatory response that hinders recovery.<\/p>\n Still, concussion likely causes some degree of dysfunction in the autonomic nervous system (which controls cerebral blood flow, breathing and heart rate) and often patients suffer “exercise intolerance”, or a flare-up in symptoms when their heart rate increases. Many sustain whiplash injury to their neck, the symptoms of which can linger and overlap significantly with those of concussion.<\/p>\n Some experience issues with their visual or vestibular systems, which can cause a range of debilitating symptoms: blurred vision, difficulty reading and concentrating, balance problems, dizziness and motion sensitivity. Psychological factors like depression and anxiety, and how people cope with the stress of concussion, can also exacerbate symptoms and prolong recovery.\u00a0<\/p>\n “We really don’t know who is more at risk of experiencing persistent symptoms, which is the difficult thing,” says Sarah Hellewell, a senior research fellow in neurotrauma at the Perron Institute and Curtin University. “So if you have a concussion, and you go to your GP or the hospital, they really have no data to be able to say, ‘You’re going to be fine’ … or, ‘We need to keep an eye on you because you might have problems down the track’.”<\/p>\n Several studies have found women are more susceptible to concussion and take longer to recover than men, perhaps because they have smaller, more breakable axons, as well as weaker necks, which can protect against acceleration forces. Hormones like progesterone and estrogen might also influence concussion outcomes for better or worse, while some researchers argue women are just more likely than men to report lingering symptoms.\u00a0<\/p>\n But brain injury in women remains alarmingly understudied \u2014\u00a0mostly on the basis that female sex hormones can complicate medical research. “At this point there’s really no excuse,” says Dr Hellewell, who’s currently studying hundreds of adults with concussion to identify risk factors for poor recovery. “It’s not something that we can just overlook and say, ‘We don’t study half of the population because a natural part of their biological process can interfere with the results that we expect to see’. I think we really need to be designing studies with that in mind.”<\/p>\n Various other factors are linked with an increased risk of developing persistent symptoms, including a history of concussion, a history of anxiety and depression, the type of force applied to the brain, and sustaining the injury during adolescence. But there’s “conflicting” evidence for how influential those factors are, Dr Hellewell says \u2014 not everyone with depression or migraines\u00a0will recover poorly; many teenagers will seemingly bounce back just fine.<\/p>\n In other words, every brain injury is unique, and persistent symptoms are probably caused by a complex interplay of physiological and psychological factors.<\/p>\n For Barry Willer, a professor of psychiatry and research director at the University at Buffalo’s Concussion Management Clinic in New York, a crucial reason why some people don’t recover well is that they’re getting too little exercise. In a study published last year, he and his colleagues found adolescents could speed their recovery from sports concussion and reduce their risk of experiencing persistent symptoms by almost 50 per cent by doing aerobic exercise within 10 days of injury.\u00a0<\/p>\n Engaging in sub-symptom threshold aerobic exercise \u2014\u00a0meaning exercise that doesn’t worsen concussion symptoms\u00a0\u2014\u00a0can help people recover more quickly, the study found, probably because it regulates the autonomic nervous system (ANS), improves cerebral blood flow and enhances neuroplasticity. This matters, they wrote, because delayed recovery has “substantial” costs in the form of academic difficulties, depression and reduced quality of life.\u00a0<\/p>\n Importantly, waiting too long to start exercising can cause setbacks, Professor Willer says. “Let’s say someone … gets told, ‘Oh, you’ll get better, just take it easy’ \u2014 which is very common particularly for family practitioners to say \u2014\u00a0and we get them six weeks later? It’s much, much harder to teach the ANS to recover. That’s probably the number one factor causing delayed recovery and prolonged symptoms.”<\/p>\n Of course, exercise is only part of the concussion picture and will only push some patients so far, particularly those with, say, undiagnosed vestibular issues or severe ANS dysfunction. Some people can’t get their heart rate over 90bpm without triggering symptoms, meaning just standing up can be a challenge. As Dr Hellewell puts it: “If you’ve been told to exercise because it will help you but you’re getting dizzy and vomiting halfway through a walk, then exercise is probably not the most helpful thing if you’re not at that stage yet.”<\/p>\n Still, it’s probably been one of the biggest shifts in concussion management. Until relatively recently, the prescription was just to rest in a dark room\u00a0\u2014\u00a0“cocoon therapy”, it was called. Now, it’s recommended people rest for a couple of days, before gradually increasing physical and cognitive activity, so long as it doesn’t worsen symptoms (this can be measured with the Buffalo Concussion Treadmill Test).<\/p>\n “In the early days, we would come across these young people who had been told to go home and isolate and they were just psychological wrecks,” Professor Willer says. “They … lost contact with their friends, it was just awful what some advice had done to their lives.”<\/p>\n Then again, when he first began working in the concussion space in the 1990s, many brain injury experts just didn’t see concussion as a serious problem, he says \u2014\u00a0people struggling with persistent symptoms were pejoratively badged “the worried well”. “It was like, ‘Let’s get on with life, that’s not an issue\u00a0\u2014\u00a0you should see what people with severe brain injury have to live with’. And so we really didn’t have as much respect for it as we should have.”<\/p>\n Disturbingly, well-meaning doctors in Australia are still prescribing concussion patients unqualified rest, potentially prolonging their recovery. In general, the kind of advice and support people receive from GPs is “highly variable”, Professor Ponsford says. Some have experience with concussion and give good guidance for managing symptoms, how to ease back into work or study. Others not so much, “largely because doctors aren’t really taught about mild traumatic brain injury” and may have done their medical training when “just rest” was the gold standard.\u00a0<\/p>\n Emergency doctors, meanwhile, will often focus purely on ruling out potentially life threatening problems \u2014\u00a0skull fractures or brain bleeds\u00a0\u2014 and don’t necessarily give advice for managing concussion, or what to do about persistent symptoms. “This is a relatively common phenomenon; many GPs have been confronted with it, but they really don’t have a clear set of guidelines to tell them what to do,” Professor Ponsford says. “We actually don’t have guidelines in this country for the management of mild traumatic brain injury.”<\/p>\n For months after her concussion, Melissa Clark couldn’t fold clothes, read her kids Spot Goes to the Beach or unpack a dishwasher: processing what plates or forks were and where she should put them was beyond her capacity.<\/p>\n She’d been sitting by a playground with friends on New Year’s Day in 2018 when her toddler started running towards the road. Wearing a wide-brim straw hat, she jumped up to chase him, but instead ran head-first into a fat wooden beam. “I didn’t faint or pass out but I was in enormous pain straight away,” says Ms Clark, 42. “I just remember sitting with my friends with my head between my legs.”<\/p>\n Within hours she was slurring her speech and mixing up words. But it wasn’t until she visited a third GP a week later \u2014\u00a0two others had told her she’d be alright, just get some rest \u2014\u00a0that she was diagnosed with concussion. What she wishes she’d known back then was that recovery\u00a0\u2014\u00a0getting her life back \u2014\u00a0would be a two-and-a-half-year slog.<\/p>\n She’d badly injured her neck, just standing up made her feel dizzy and nauseous and her anxiety was through the roof. “I was really sensitive to noise and movement,” says Ms Clark, an executive director in education policy. “I couldn’t even read a story book to the kids without feeling like I was going to throw up.”<\/p>\n Now she feels “extremely lucky” that her physio knew enough about brain injury to point her to the Epworth Concussion Clinic in Melbourne, where she lives. But at the time, the six-week wait to get in seemed to set her back, and she started rehab \u2014 with physios, a neuropsychologist, an occupational therapist and a behavioural optometrist \u2014\u00a0feeling like she was unravelling.<\/p>\n “It was maybe six months before I improved, before I could get my heart rate up,” she says. “An average day was just sitting at the front of my house, doing my exercises, looking at the trees … walking for a couple of minutes at a time.”<\/p>\n Managing stress and anxiety, Ms Clark learned, was a crucial part of recovery, but some days it felt impossible. She was off work completely for seven months and for a long time had no idea when she’d be able to go back (concussion is frustrating like that; no one can tell you when you’ll be better). Exercising \u2014\u00a0how she’d normally deal with stress \u2014\u00a0wasn’t an option.<\/p>\n Her husband, who also had a busy job, suddenly became primary carer to her and their two little kids, which put enormous strain on their relationship: what would her injury mean for their family, their financial future? And rehab itself \u2014 which generally involves working out where your pain or symptom threshold is and pushing through it \u2014\u00a0often felt like failing.<\/p>\n “Losing my capacity to work especially was hard, and I put a lot of pressure on myself \u2014 I don’t think I ever fully let it go,” she says. “My work, my intelligence, is kind of how I defined myself, so losing both those things had a huge impact. I was also in a lot of pain. I had intense migraines every day for months \u2014\u00a0I just wasn’t functioning.”<\/p>\n Even with a supportive partner and friends, a secure job, and access to therapy, she says, there were many dark days. “I wouldn’t have said I was suicidal, that you couldn’t have trusted me to be alone with myself. But I remember thinking, if there was an easy way out, I would take it.”<\/p>\n John Olver knows he runs a rare and vital service: the concussion clinic at the Epworth hospital in Melbourne, where I am still a patient. It’s the only multidisciplinary concussion clinic in Victoria, where rehabilitation services, he says, are heavily concentrated in the private system. The clinic opened in 2016 in response to an “increasing need” in the community, a jump in referrals from GPs at a loss for what to do with patients who weren’t recovering from concussion.\u00a0<\/p>\n Until then, people were probably doing what many (if not most) still do today: finding their way to siloed clinicians \u2014 neurologists, dizziness experts, psychologists. And for some, that might be all they need. “Sometimes, just sitting down with a person, talking to them about what persistent post concussion symptoms are, giving them some instructions for exercise, is enough,” says Professor Olver, medical director of rehabilitation at Epworth HealthCare and Victor Smorgon Chair of Rehabilitation at Monash University.\u00a0<\/p>\n “But I also think there was a lot of concussion that went unnoticed … there wasn’t as much public awareness of the dangers.” Not so long ago it wasn’t unusual, say, for an AFL player to suffer a concussion in the first quarter and be back on the field in the fourth (he still hears of that happening in community sports).<\/p>\n “So I suppose in the last six or seven years there’s been more understanding of what probably needs to happen and more people … seeking help,” he says. “I would imagine in the past people just went to work with thumping headaches and dizziness and struggled on, and then eventually probably got better, or didn’t.”<\/p>\n Or didn’t. The clinic currently gets up to 10 referrals a week, mostly from GPs, which Professor Olver says “really overwhelms the system”. An internal analysis of 609 patients found more than half were female \u2014\u00a054 per cent \u2014\u00a0and a similar proportion were nursing their first concussion.<\/p>\n Perhaps most strikingly, patients referred within three months of injury recovered better than those who arrived later; the slower referrals reported more severe symptoms and lower overall activity levels at discharge. That’s not surprising: numerous studies have found swift diagnosis and treatment can significantly lessen the impact of persistent symptoms.<\/p>\n Still, the majority of patients, Professor Olver is keen to stress, can make a full recovery\u00a0\u2014\u00a0or at least big improvements. “That doesn’t mean they don’t go through a hell of a time with the symptoms they’ve got, given they’re affecting all aspects of their life.”<\/p>\n Many people really struggle with the invisibility of their condition, he says \u2014\u00a0sometimes friends or colleagues don’t believe they’re unwell, or don’t understand why they can’t perform their normal duties at work. “You’ve got nothing to show for it. You are feeling dreadful, but everyone else says, ‘Oh come on, what are you doing’, sort of thing. And so that’s part of the psychological burden as well.”<\/p>\n Until recently concussion has been\u00a0regarded as a\u00a0“fairly innocuous condition”, says Professor Jennie Ponsford.(Supplied<\/span><\/span><\/span>)<\/p>\n
Every brain injury is unique<\/h2>\n
Brain injury is understudied in women but there’s\u00a0“no excuse” for researchers to keep excluding female subjects, says Dr Sarah Hellewell.(Supplied<\/span><\/span><\/span>)<\/p>\n
Exercise matters<\/h2>\n
At the very least,\u00a0GPs need “basic” training in how to manage concussion, says Professor Barry Willer.(Supplied: Douglas Levere, University at Buffalo<\/span><\/span><\/span>)<\/p>\n
If you or anyone you know needs help:<\/h2>\n
‘If there was an easy way out, I’d take it’<\/h2>\n
“Losing my capacity to work especially was hard, and I put a lot of pressure on myself,” says Melissa Clark.(ABC News: Danielle Bonica<\/span><\/span><\/span>)<\/p>\n
Melissa Clark suffered from migraines for months after her concussion.(ABC News: Danielle Bonica<\/span><\/span><\/span>)<\/p>\n
At the clinic<\/h2>\n
The majority of concussion patients\u00a0can make a full recovery,\u00a0or at least big improvements, says Professor John Olver.(ABC News: Ashleigh Barraclough<\/span><\/span><\/span>)<\/p>\n