I recently had both hips replaced. The surgeon I saw was the one who operated on my daughter’s hips in 2019, so we already knew and trusted him. And this turns out to be an incredible stroke of luck, because he happens to be one of the up to date surgeons who performs an anterior hip replacement, which means he goes in from the front instead of the back, and does not cut any muscles, unlike the posterior version, which cuts through quite a lot of muscle.
As you can imagine, the recovery from the anterior version is vastly better. I was on my feet the same day, and pain free two weeks later. My mobility is amazing, and I can walk startling distances without drama, only a month after the surgery. This is not the story you hear from people who have the posterior version. Why am I going on about this? Because it was sheer luck that my surgeon is one who prefers the anterior version. There are still many surgeons out there who still do the posterior operation, and whose patients might never find out that they could have avoided months of suffering, pain, and trauma.
This is our health system, folks. It is not, for the most part, the system we fondly imagine – guided by evidence, data, and best practice. Instead, it is a festival of hubris, arrogance, ignorance, and bullying, that can’t be trusted to work in our best interests. We can surely do better. We must.
What follows is the story of just some of the health struggles endured by my daughter, Zoe, over the past few years. The story is, as yet, unfinished, but it already paints a picture of a system that is not at all fit for purpose. I warn you, it’s a wild, traumatic ride.
This is the story of the worst three months of our lives. Of how the health system put my daughter at risk. Gaslit her. Patronised her. Ignored her. Bullied her. Could well have killed her.
Though the worst of the story has lasted three months so far, it began over three years ago. When Zoe was 15 years old, her hips started spontaneously partially dislocating while she walked. As you can imagine, this was quite painful. Though an X-Ray resulted in a radiologist’s report saying Zoe had “normal” hips, she saw a sports doctor who took one look at the X-Ray and said, “Yep, that’s not even close to normal. Radiologists aren’t trained to see this stuff.” (This does rather beg the question of what radiologists are trained to see.)
Had the report gone solely to Zoe’s GP, I expect we’d have been told her hips were fine, case closed. Fortunately, this particular sports doctor had seen many, many hips with this issue. He had even trained with one of the two surgeons in our city who were capable of fixing the problem. In this, we were lucky.
He diagnosed acetabular retroversion – a fancy way of saying Zoe’s hip sockets faced kind of outwards, instead of forwards, the way they are meant to. Zoe then had 6 months of specialised physiotherapy to see if it was fixable with just exercise. Although her physio raved about how “compliant” she was (which made us all guffaw, because compliant is not a word anyone has ever used about Zoe in any other context), it became clear that physiotherapy couldn’t get her all the way. So there she was, at 16, scheduled for two radical hip surgeries.
For us, the surgery on that first hip was terrifying. Sitting in a cafe near the hospital for more than four hours, trying not to completely freak out, we were intensely relieved when the call came that Zoe was awake and asking for us. The surgeon told us Zoe’s bones were so strong that she had smoked the drill, and he’d gone through three battery packs operating on her, which was equal parts funny and disturbing.
I crept into the recovery room, heart in my mouth, to find Zoe astonishingly chirpy, and just a tad loopy from the painkillers. We had a lovely time admiring the butterflies on the walls, and complaining about the octopuses that only had six legs (hexapuses?). This is fine, I thought. We can manage this. She was out of bed within 24 hours, even putting a small amount of weight on the leg with the radically reconstructed hip. Recovery was long, arduous, and at times incredibly fraught, but Zoe was brave, and we got through it.
Then came her second surgery. By this time we figured we knew what we were in for. It was still daunting, but the level of terror was much reduced. I was allowed into the operating room with her while they anaesthetised her. I even held her, as she sat up and leaned into me while the anaesthetist injected the spinal block through her back. “That’s weird,” the anaesthetist commented, as Zoe swung her legs up onto the table, “she shouldn’t still be able to move her legs. It must be taking a while to work.” Little did we know that moment was to haunt us over the years to come.
Zoe’s dad, Andrew, and I spent the duration of this second surgery at the same cute little cafe, making friends with the local hounds. When the call came that Zoe was asking for me, I practically skipped up to recovery, expecting the same chirpily loopy outcome as the last time. It could hardly have been more different. Zoe was barely lucid, moaning and crying, and clearly in terrible pain. While trying to soothe her, the nurses explained that the spinal block had worn off mid surgery, so she had needed a lot more painkillers. As we later learned, she’s actually allergic to some of the painkillers, which explains a lot about the alarming shape she was in, but that was not acknowledged as a possibility at the time.
Zoe had also lost a lot more blood during this surgery, so she was quite weak and unwell. The recovery process was much harder this time, despite an iron infusion and finally identifying that it was morphine that was making her sick. That information, by the way, was not communicated to Zoe’s GP, or noted in her file anywhere. If we hadn’t later (much later) requested her hospital records and trawled through the notes day by day, Zoe would not know now which drugs to avoid in future. She actually figured it out herself, and started refusing to take it. But at the time she was loopy with pain and painkillers and later didn’t recall which one it was after being discharged from hospital. There were so many!
While in the hospital, Zoe also started getting extremely dizzy when she stood up. At first we ascribed it to all the complexities of surgery, blood loss, painkillers, and recovery, but at home it seemed to get worse and worse. Months later, after her hip was fully recovered, she was running and working out enthusiastically, but also coming alarmingly close to fainting every time she stood up. She was getting a lot of headaches, some nausea, and her heart rate would skyrocket every time she stood up.
Zoe also had horrifyingly flexible shoulders, and could fold herself in ways that quite startled the first GP she showed. Her shoulders tended to dislocate, just like her hips, but physiotherapy helped a lot with that. It did mean, though, that together with her hip issues, she was a likely candidate for the connective tissue disorder hypermobile Ehlers Danlos Syndrome (hEDS).
She was put on a waiting list for an appointment with the Genetics Clinic at Monash Medical, which seemed to be the only way to get diagnosed. But while we waited for that, we were effectively on our own, trying to figure this thing out. While chatting with hEDS activist and advocate Asher Wolf, who I know from twitter, I found out that hEDS often comes with a condition called POTS – Postural Orthostatic Tachycardia Syndrome. The characteristic signs of POTS are a rapid heart rate on standing, and a lot of fainting. Asher was extraordinarily generous with their time and expertise, and gave us a wealth of information about POTS, and about hEDS.
The diagnostic criteria for POTS is that your heart rate jumps by 30 beats per minute or more when you stand up, and stays elevated for at least two minutes. Zoe’s GP agreed that this was plausible, and referred her to a paediatric cardiologist. Sadly this cardiologist was the quintessential stereotype of an arrogant medical specialist with a god complex.
He had his staff do many irrelevant and expensive tests before he even spoke to Zoe. Once he deigned to grace us with his presence, Zoe detailed her history, and despite her assertions that she was very fit and active, he decided that she was merely “deconditioned” from the surgery. He said she needed to do more of the “right” sorts of exercise, and suggested she see an exercise physiologist to rebuild fitness and strength.
He was “quite certain” that she did not have POTS, and after taking her pulse on sitting and standing, grandly declared that he was right, she did not. He was phenomenally condescending and dismissive, and he charged us $650 for the privilege of being gaslit into thinking Zoe was fine.
After taking a few months to regroup, Zoe saw a different cardiologist, who looked at the notes from the first one and said, “By his own criteria, he showed that day that you have POTS.”
Mind you, the diagnostic criteria are somewhat nonsensical. If your heart rate jumps by 29, are you fine? What if it jumps 29 today but 35 tomorrow? This expectation that a body can be a predictable, consistent machine seems rather bizarre to anyone who has ever actually inhabited one. (Frankly, I am not always convinced that medical specialists fit this criteria.)
The new cardiologist prescribed lots of electrolyte drinks, and increased salt in Zoe’s diet. When that failed to help, he put her onto beta blockers. They helped a bit, and we started to think that maybe this was actually fixable. Meanwhile, no one we saw in the health system seemed really bothered by her reported constant headaches, though they were becoming debilitating. In addition, her nausea was picking up to the extent that Zoe started losing weight at a worrying rate. At the same time, the beta blockers slowly became less effective, and even doubling the dose didn’t seem to have an impact.
You might think that, around this time, those we consulted in the health system would shake their collective heads and say, “There’s clearly something going on here that we haven’t identified. Let’s do our damndest to figure it out!” But … no. Instead, they seemed to vanish into a dismissive, faintly accusatory silence.
Perhaps the headaches were hormonal. Maybe she was stressed, or not doing enough exercise. Or she wasn’t getting enough sleep. Maybe melatonin would help. Indeed, around this time Zoe was developing quite horrific insomnia. Melatonin helped initially, but then she needed to increase the dose to get the same effect, and we were right back on the same increasingly slippery, fast deteriorating slope.
Let’s pause for a moment, and line up some facts in an order that no-one in the health profession seemed to have thought to do at any point.
Zoe had radical surgery, including a spinal block anaesthetic which went wrong.
After this she got increasingly unwell, with symptoms that were easily dismissed by a cruel, ignorant, and gaslighting system that simply LOVES to blame pedestrian causes – people are just lazy, or overweight, or eating wrong, not exercising enough, or drinking too much caffeine or alcohol.
Despite the gaslighting, the symptoms were, in fact, definitively neurological in origin. Remember this. It’s going to be important. And take some deep breaths, lest the story makes you want to punch something.
By this time we, ourselves, were starting to believe the propaganda, as you do. After a while, victims of bullies often believe that they themselves are at fault. Perhaps it is just hormonal. Perhaps Zoe needs to eat more salt, drink more hydralyte, exercise differently, or even not be vegetarian (though her iron levels were perfectly normal). Maybe it’s lifestyle. Maybe it’s poor sleep hygiene.
Maybe, in short, it really is the patient’s fault. This is where the medical system loves to land when faced with a tricky puzzle, I find. Blame the patient. It’s a great way to absolve yourself of responsibility and perhaps save some money on more expensive options.
Oddly enough, though, Zoe’s genetics clinic appointment had still not come through, after literally years of waiting. Partly delayed by COVID-19, partly by sheer lack of capacity in the system, and because Zoe does not seem to be at imminent risk of death. Frustrated, early last year Zoe asked her GP if there was an alternative, and got sent to see a private geneticist (Who even knew there was such a thing!?), who finally, at great expense, ordered the tests required to see if she had Ehlers Danlos. She did not! Hooray! (We found out later that you can’t rule Ehlers Danlos out using genetics test. Heigh Ho.) But the results showed she might have some other obscure condition called nodular heterotopia, so off she went for an MRI.
Now, I don’t know if you have ever had an MRI, but they are quite extraordinary devices, which make a series of bizarre and ludicrously loud noises. They clank, grind, thunk, rattle, clatter, and howl. Each time you think you might get used to a noise, it changes to something wildly different. They are the very opposite of restful. Zoe, however, was so exhausted by this time, that she fell asleep right in the middle of the scan, much to the astonishment of the attending staff.
The MRI was in February, and Zoe heard nothing further until she had another appointment with the Geneticist in August. He also happens to be a neurologist. He reassured her that she did not have ‘nodular-whatever-the-heck-that-was’, but she did have a cyst in her pineal gland, buried deep in her brain. Not to worry, these are almost certainly benign, especially if they are smaller than 9mm. Hers was 10mm, but ‘probably fine’. Really, we just needed another MRI to make sure it hadn’t grown.
Interestingly, the initial MRI report did not mention the cyst. The Neurologist/ Geneticist saw it and asked them to look again. In March. But no need to contact Zoe, right? No rush. It’s not like she was suffering debilitating symptoms, or anything, unless you actually listened to what she was telling you, but why would you do that? Specialists are Gods, right?
The breakthrough (maybe)
Being a nerdy type of family, we immediately started to research pineal cysts. Many sources did, indeed, say that they are benign. That seemed to be the textbook response. But it turns out that there are increasing numbers of case studies over the last five years or so that show pineal cysts can actually cause all kinds of unpleasant neurological symptoms, such as insomnia, headaches, dizziness, POTS, even nausea and vomiting. Hallelujah! Could this be an answer?
While waiting for the results of the second MRI, Zoe asked the neurologist for a referral to a neurosurgeon. God knows we don’t want her to have brain surgery – BRAIN SURGERY!!!! – but the case studies suggest that there is potential for a vastly improved quality of life.
Thus began one of the worst periods of our lives – hoping the MRI shows that the cyst is growing so they will have to do something about it. Hoping that our daughter will need brain surgery. I can’t even believe that last sentence. Hoping for brain surgery. Wild.
Just the term “brain surgery” feels like it should come with klaxons, alarms, and warning bells.
We can’t, of course, get the MRI results sent to us. They have to go through a doctor. Because we can’t be trusted with our own health information without a doctor controlling and mediating our access. That is a whole other rant, so let me just say we fought without success and leave it there. Eventually we went, hearts in mouths, to the GP to get the results, to be told that the cyst hasn’t grown.
The GP was happy. There’s no need for any further investigation or treatment, yay! Never mind that Zoe has, by this time, lost fifteen percent of her body weight in just a few months. Never mind that her quality of life was deteriorating on an almost daily basis. No need for any other action. She’s fine.
Our last hope, it seemed, lay with the neurosurgeon. We waited nervously in the waiting room. When he opened the door and called Zoe in, he did not introduce himself or shake hands. He did not ask who I was or even acknowledge me, until I said hello, which he acknowledged curtly. We sat down, Zoe explained the situation, and he called up the MRI. For what seemed like hours, but was probably only the longest ten minutes of our lives, he scrolled back and forth through the MRI, saying nothing. Nothing at all. The tension in the room grew so thick it seemed to crush us in our seats.
Then he turned to us and said, “It’s a pineal cyst. They are benign. I recommend conservative management.” Zoe asked what ‘conservative management’ meant. He said, “Not operating.” I asked him about the case studies in the literature that suggest they can cause exactly these symptoms. He scoffed about some doctor in Sydney who would operate on anything. I knew he meant Charlie Teo (and if you haven’t read that tale, you should; it is quite a trip), and I calmly redirected him, though my heart was beating its way right out of my body. “No,” I said, “there are increasing numbers of case studies, mostly in the US but some even in Melbourne, showing that operating on pineal cysts can relieve these symptoms.” I asked him what he thought about those studies.
Despite clearly never having read these studies, nor even knowing of their existence a moment ago, he scoffed. “Underwhelming!” he pronounced, grandly.
Desperately, Zoe asked what might be causing her symptoms. “No idea,” he snapped. “It’s not neurosurgical. Not my problem.” (To be fair, I don’t remember whether he actually said the words “Not my problem”, but they hung in the air like some kind of toxic cloud, even so.) Eventually, as we asked further questions, he gruffly ordered Zoe to stand by the wall, barking orders until she was in the position he required. He pulled down his surgical mask (Did he see with his mouth? Or maybe his nose?) and stared into her eyes for a long moment. “No,” he said. “Nothing.”
Zoe and I tend to be the ‘What You See Is What You Get’ type of interface, so by this time even a ‘God-like Being Who Must Not Be Challenged’ could see that he had two very upset people in his office. He muttered half-hearted apologies and shuffled us out as fast as he could. We paid around $400 for the privilege of once again being gaslit, ignored, and patronised.
Once we got home I started emailing every neurosurgeon we could find. I put out calls for help, for recommendations of neurologists who might be able to help us navigate the diagnostic process. Who might be prepared to listen and take us seriously. We found a couple of likely candidates who, of course, were not taking new patients. We left messages and referrals anyway. We sank into a kind of helpless, despairing daze. At best, we figured we were facing years of trying to eliminate all possible diagnoses until we could find the correct one. At worst, Zoe might never get better. It was hard to know how to progress from this point.
And then, four days later, as I was about to enter a Zoom meeting in my home office, Zoe appeared in the doorway, phone in her hand, a tinny voice issuing from the speaker. “It’s HIM!” she mouthed. “WHO??” I whispered back, bewildered. Then the words coming from the phone started to register. I heard “CSF leak”. I heard “Spinal MRI”. I heard “easily fixed”.
I scuttled through my meeting with indecent haste, and hurtled out of my office to find Zoe, and demand an explanation. It turned out that the neurosurgeon, who, by this time, we were referring to as Dr Asshat – the same one who had pronounced the issue not neurosurgical and hence not his problem – had looked again at the MRI. He had detected signs of low intracranial pressure, meaning Zoe was low on cerebrospinal fluid (CSF). CSF is the cushioning fluid that our brains normally float in, and which also protects the spine. This, by the way, was not in the radiologist’s report, so Dr Asshat had called the radiologist to ask him if he could also see it. He confirmed that yes, he could. He was quite sure Zoe had a CSF leak. Which, by the way, can cause all of these symptoms, oh, and incidentally can cause pineal cysts to be bigger than usual.
And guess how you get a CSF leak? Sometimes they are spontaneous, but they are quite horrifically common following… wait for it… spinal anaesthesia. We don’t know exactly how common, because, get this – no one looks for them or documents them. What we do know is that small CSF leaks may resolve by themselves, but a CSF leak that lasts more than 6 weeks should be surgically repaired, or, if it’s small enough, by simply injecting some of your own blood into the spinal column, where it should clot and block the hole. “If it’s more than 6 weeks old.” Zoe’s surgery, at this point, was over three years ago. Her CSF leak is over three years old.
If you don’t repair them, there’s a risk of complications, some of them quite severe. Oh, and what’s a terrible piece of advice for someone with a CSF leak? Exercise more! Quite, quite dangerous to exercise a lot when you have a CSF leak. So not only was Zoe gaslit and told her problems were quite likely her fault, or not really problems at all, she was given actively dangerous advice. The only reason we got a diagnosis in the end was because we pushed – and pushed hard! – to keep getting referrals, and then to get answers from the specialists. It was exhausting, and extraordinarily traumatising. It should not have been that hard.
This piece was written late last year, and we are still waiting for the blood patch. Once the results of the spinal MRI came through, Dr Asshat decided he wasn’t so sure about the CSF fluid being low, but a blood patch was “probably worth a try”. We saw another neurosurgeon who was extremely dismissive and said Zoe was undiagnosable and needed her symptoms individually managed, as she felt it was likely there was no detectable cause. She said to us “Your problem is you want someone to help you. My job isn’t to help you. My job is to operate on anything neurosurgical.” Suffice to say, the search is ongoing.
So why is it that hard? In essence, because our health system is actually set up in ways that make everything far more difficult than it should be. There is a huge list of ways in which it’s problematic, but there are a handful that are really key to poor outcomes.
1. The funding model of General Practitioners means they really have to funnel patients through at an absurd rate in order to keep their practices going. Ten minutes is barely long enough to diagnose a single, textbook issue. Even a long appointment – at an estimated 20 minutes – is not long enough to take a comprehensive history, or go back through patient notes to figure out whether any past issues might be causing trouble. It’s not even long enough to check medications for possible interactions.
That’s downright dangerous for anyone with complex health needs. And at some point in our lives, all of us are going to have complex health needs. These short appointments only really allow for a GP to consider a single issue in isolation. Which brings us to issue 2.
2. Specialists focus on one specific area of medicine, which tends to involve one specific system of the body. Unfortunately, there actually are no conditions that are perfectly contained within a single speciality, because the body is an integrated system where every part is interconnected, and interdependent, with every other part.
The gut microbiome, for example, has been linked to mental health. Poor dental health has been linked to serious pregnancy complications. There is no part of the body that functions in isolation, and many of the assumptions that medicine has made about how the body works have been challenged, altered or blown out of the water in recent years. For example: the appendix is not vestigial and useless, but actually serves at least one important function (as a reservoir of healthy gut bacteria); junk DNA is not actually junk but functional (it just doesn’t code for proteins, which is what we used to think was the only function of DNA). Oh, and that tongue map of tastebuds many of us were taught about in primary school? Where different parts of your tongue can taste different things? Complete fabrication.
Zoe was referred to a cardiologist for her POTS, a geneticist for possible Ehlers Danlos, a neurosurgeon for the pineal cyst. None of them were looking (or capable of looking) at all of the symptoms, or the whole patient.
3. Doctors operate with very little, if any, oversight. No-one checking to see if anything has been missed. No-one double checking the radiology report to make sure wildly abnormal hips haven’t been labelled normal. No-one making sure all the right blood tests were done. No-one checking that the results were reported to the patient. No-one to say, “Hey, when you checked Zoe for POTS, why did you say she didn’t have it, even though she met your own diagnostic criteria?” No-one checking a new prescription to make sure it doesn’t have dangerous interactions with existing medications. No-one ensuring that the safest, least painful version of the surgery is conducted. No-one even checking that patients understand what the hell is happening to them. We were extremely lucky that Dr Asshat chose to look again at the MRI. Most of the time when a specialist pronounces their God-like opinion, there’s very little followup.
Doctors are human. They miss stuff. They make mistakes. And they have our lives in their hands. Surely some checks and balances are warranted, when the stakes are so high?
The lack of oversight also means that no-one is documenting mistakes that get made. Monitoring, for example, the number of CSF leaks that result from spinal anaesthetics and putting procedures in place to check for them as necessary.
It has taken us over three years to get even the ghost of a diagnosis for Zoe. The saga us far from over, I fear. But imagine if we hadn’t pushed, fought, and dug our heels in, demanding answers? How many patients are out there, suffering undiagnosed CSF leaks and other debilitating conditions because they are being ignored, patronised, and gaslit into not demanding answers?
Our health system prioritises visible, measurable symptoms. If it can be measured with a blood test or a scan, then it will (probably) get taken seriously (always assuming it’s actually possible to get the tests or the scans performed!). But if we are reporting symptoms that doctors can’t see? Good luck getting taken seriously.
Getting proper health care should never be this hard. It should never be traumatic. And, above all, it should make us better, not sicker. Does that seem like a lot to ask?