Some readers have been surprised by the medical section of #RaisingHeretics, feeling that it must be an exaggeration. So here is another story that might have made it into the book, if all of it had happened in time.
My daughter, Zoe, has had a lot of health issues, including major surgery to re-position her hip sockets. That much was in the book, along with the startling findings that quite a lot of surgeries are not actually evidence based. One thing that didn’t make it into the book is that, when she started having trouble with her hips “popping out” when she walked (the technical term is “subluxing” – they weren’t quite dislocating, but they came pretty close), she got an x-ray and was referred to a sports doctor.
We were lucky that the sports doctor worked closely with a couple of surgeons who specialise in acetabular retroversion, because the radiologist had labelled the resulting scan as “normal”. When Zoe’s surgeon looked at the scan, he measured the angles and showed that Zoe’s hips were about as far from normal as it was possible to be and still be able to walk. Had a doctor looked at the radiologist’s report and taken it seriously, Zoe’s hip problems might not have been diagnosed at all. Once diagnosed, Zoe was able to get specialist physiotherapy plus surgery and can now walk, run, and generally appear as though she has no hip problems at all.
Meanwhile, a GP suggested that Zoe’s collection of symptoms might add up to Ehlers Danlos Syndrome (EDS). She’s been on the waiting list for a Genetics clinic for nearly 3 years, so we have no formal diagnosis as yet. Plus, most doctors know very little about EDS. In fact, you could argue that not much is known about EDS in general, but that’s another set of rants.
Zoe has been managing her symptoms as best she can, needing expert physiotherapy for her shoulders as well as her hips, but we didn’t have a lot of support for a way forward. In lieu of the formal diagnosis, there didn’t seem to be much we could do. In fact, even with a diagnosis it wasn’t clear that there was any significant progress to be made.
In December 2019, though, Zoe started getting increasing headaches and dizziness, frequently needing to sit or lie down quite suddenly after standing. That makes it sound quite controlled, but in fact it’s not unusual to find Zoe sagging against a doorframe or collapsed on the floor without warning. It’s pretty alarming stuff. Fortunately when the EDS diagnosis was first bandied about, I made contact with EDS advocate and all around heroic challenger of injustice and medical orthodoxies, Asher Wolf, who made time for a long phone call that gave me a lot more information about EDS than I had been able to find up til then. When these new symptoms became alarming, I asked them what they thought via twitter direct messages.
“Asher, Zoe is getting dizzy spells and headaches. any idea if that can be a symptom of eds? her iron levels are fine.“
Asher got back to me immediately.
“POTS: postural Orthostatic tachycardia can be an EDS comorbidity. Does she get dizzy when she stands up? Is she low blood pressure? Give her some hydralyte to start with.”
This was the first we had heard of POTS, but the more reading we did, the more Zoe’s symptoms sounded very much like classic POTS, so we got a referral to a paediatric cardiologist (because Zoe was under 18 at the time), with an appointment scheduled for 6 months later.
This is where I have to restrain myself from typing so hard I push the keys right through the laptop and out the underside of the desk. The cardiologist swept into the consulting room, confident of his own magnificence. His assistants did a range of expensive tests before he performed the one test which is diagnostic of POTS. He took Zoe’s pulse while she was sitting, had her stand up, and took it immediately, and then a couple of minutes later.
The diagnostic criteria says POTS is clear when the pulse rate jumps by 30 or more beats per minute on standing, and stays that way for several minutes afterwards. Zoe’s pulse rate did exactly that (though he did not tell us the numbers at the time). At this point, he condescendingly told us that Zoe definitely did not have POTS. He thought Zoe had simple deconditioned during her time in hospital, and though Zoe had made it clear to him that she was very fit and doing a lot of exercise, he thought it was probably the wrong sort of exercise.
And then he charged us a small fortune for the privilege of his condescension.
We seethed all the way home. Given that the human body is not a machine and cannot be relied upon to respond the same way twice, who was to say that Zoe would not meet the diagnostic criteria for POTS if he did the test a second time? (We did not know, at this point, that she HAD met the criteria, and he had either missed it or ignored it.) Why was the diagnostic criteria so narrow anyway? What if it was 29 beats instead of 30? Zoe was clearly still unwell, how could 29 be dismissed as deconditioning while 30 was POTS? My personal theory is that the cardiologist had taken Zoe’s history, decided on his diagnosis, and then done the test, with confirmation bias causing him to ignore or misinterpret the results.
Zoe was, naturally, not keen to find another cardiologist and try again. We were all quite dispirited by the arrogance and condescension, and the implication that we were overreacting to simple “deconditioning” which would right itself given time.
Meanwhile, her symptoms got worse. Eventually, with the support of a new GP, Zoe was referred to an adult cardiologist, whose eyebrows apparently rose dramatically on reading the report. Astonishingly, the original cardiologist’s report noted his findings, which according to his OWN CRITERIA clearly indicated POTS. The new cardiologist did his own tests, and while waiting the requisite few minutes to take Zoe’s pulse again, he commented that even if she did not fit the precise criteria, there was a big gap between “does not have POTS according to strict criteria” and “is perfectly healthy”, and in fact the treatment was the same.
Lo and behold, Zoe does have POTS, and now she also has a treatment plan. What’s more, she has a cardiologist who takes her seriously and does not condescend to her. (I mean, really, if you knew Zoe you would know that condescending to her is dangerous in the extreme. You could lose an arm that way.) This is a low bar for a doctor, I feel, but one that is all too often impossible to clear.
Without Asher Wolf generously sharing their time and expertise, Zoe would likely still be in medical limbo. And that arrogant, ignorant, condescending doctor cost her months of pain and suffering.
What is the moral of this story? First of all, listen to your body, and if what your doctor is telling you doesn’t feel right, find a new one. Secondly, do your own reading. You have to become an expert on your own condition in order to make informed and effective decisions about your care. It has been found over and over again that patients who take an active and informed role in their own care get better outcomes, but too many doctors encourage you to simply do what you’re told, while sneering at Doctor Google.
Certainly, you don’t want to diagnose and treat yourself with only the support of the internet, but you do need to know as much as possible about what’s happening to you in order to even know the right questions to ask your doctor. You are already the expert on your own body. You need to become an expert on any conditions you experience as well. Doctors are all too human and fallible, and medical science is too often more craft than science. The best doctors are the ones who acknowledge that and work with it, using evidence, compassion, and a strong rapport with their patients to achieve the best outcomes.
