My doctor gave a wrong neurological diagnosis. I should know: I'm a neurologist
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I've had phenomenal doctors too, ones who a lack of coverage for is reason enough for me to turn down a job or to choose a more expensive insurance plan. But finding those "golden" doctors in the sea of average and below average doctors has been a nearly decade long process. And it's been really easy to see how people with complex medical issues can get suckered by snake oil salesmen and grifters. When you spend so much time fighting with the medical system and getting no relief, finding someone who will pretend to give a damn is a form of relief in and of itself. And I have never once in all the times I've filed a complaint with a hospital, or office or even state medical boards gotten any response other than "We've investigated ourselves and determined we did nothing wrong".
It's a definite problem and there really needs to be a better process. The state medical board claime they don't dispute physician diagnosis, just evaluate the care of the provider within the scope of that diagnosis. So if your doctor says during your 10th visit for severe stomach pains in 3 weeks that you have gas and gives you Gas-X, and it turns out that you had appendicitis, the medical board doesn't intervene, because Gas-X was the appropriate treatment for the diagnosis. And the hospital patient advocate/experience folks aren't in the business of pissing off the doctors they work with every day. And too often doctors are unwilling to criticize the work or actions of another doctor, even when blatantly wrong. There badly needs to be an independent patient advocacy and dispute resolution that is aligned with the interests of the patient, not the doctors.
I was put on antibiotics, beta blockers, topamax and a couple of more serious medication for what was ultimately just a vitamin D deficiency that they had been too narrow-sighted to try catching. I lost a lot of respect for the medical profession at that time.
While I'm reflecting on how lucky I am to live somewhere with great health care, here's a shameless plug for the company I work for, Zipline International. We're building a scalable platform for delivering life saving medical supplies to hard to reach places that wouldn't otherwise have access, based on really cool/boring because they're so reliable UAVs. We're definitely hiring on the embedded team, and I'm sure on all the other software teams as well. Our internal metrics are getting pretty mind blowing to follow, in terms of deliveries per day/cumulative distance flown per day/literal lives saved per day. I guarantee there's plenty of fun projects to work on!
Love to hear from anyone with a different take.
My point, all of the interest and investment in AI diagnosis (IBM Watson comes to mind, but the field is decades old) is caused precisely by the poor practices in the medical field. It is of course naive to think we will solve medicine with software. But we only need to be better than average just like self driving cars are not aming to be perfect, just better than average.
Be a HUMAN doctor and we will need AGI to replace you. Be a robot and you will be replaced by an actual robot.
(note: I do not believe technology is the solution here. I am just a bit pissed after a doctor prescribed stuff without even touching or looking at an acquaintance.)
Experience-based medicine cannot.
So, it's tricky because we want to identify those treatments that actually work based on objective clinical data, as well as those that clinicians have anecdotally found effective based on experience.
And do we want treatments that have been demonstrated to work, or treatments that are based on a provider's best judgement? That's not an easy question to answer.
The benefits of demonstrated effect are balanced with those you describe of the experience-based approach.
It's a gray area.
You just can't AI-away an ER doc (at least not with current tech). Something's got to interview, intubate, suture, palpate, and prescribe all those bleeding, festering, diabetic masses flowing into the ER like the tide of the Thames. Note the downside, an ER doc is a very exhausted, burned-out human, prone to error.
I'm sorry about your acquaintance, I'd be pissed too. You definitely have a right to be!
Sit down and come up with every single possible cause of that pain, from something random and physiological, to something psychological, to something you may be doing, but may be embarrassed to talk about, to shoes, to pants, to your belt, to your cell phone holster, to the wallet you sit on, to the chair you use at work, to referred pain, to a myopathy, to a pulled muscle, to a whatever. What if during those morning runs one side of the street where your left foot falls is a slightly different height than the other side where your right foot falls and that was causing the pain? What if you keep smacking your hip on the edge of the pool? What if you tread water weird?
That's what you're asking a general practitioner to do perfectly in 20 minutes, who then would also have to know every single weird possible cause of every other possible thing a human being could wander into the office complaining of, a nonzero percentage of which is totally imaginary.
You are far, far better at knowing every strange element of your daily routine that may be causing you bodily discomfort. No doctor can reasonably sort all of that out for every patient, let alone a GP who is supposed to know everything about everything.
It's like the office HR person doing WFH asking the tech guys to diagnose their computer that is bugging out because the HR person's cat unknowingly puked on the case and it leaked onto the motherboard the night before. All in 20 minutes. Then the HR person gets mad because the tech guys didn't specifically ask "is there any possibility that an animal may have vomited on the motherboard?"
I don't mean to belittle your experience in any way, I'm just trying to make my comment entertaining so you might chuckle at it, but does my point make sense?
I would say that it's the equivalent of having the HR person mail their computer in, swapping out the motherboard, and mailing it back. This is, from my experience, what most IT departments actually do in this sort of situation. Maybe I'm wrong. I'm not an IT guy.
The surgeons proposed to directly fix the problem. I don't see a good alternative proposal for their team to make, given imperfect information about every patient.
What is a plausible mechanism for a real-world physician to intricately investigate every moment of every patient's personal life to get to the elemental root cause of every single illness? Someone would have to follow them around 24/7 with a video camera.
The surgeon proposed what was probably the algorithmic way to fix the problem.
Given that the OP was having issues because of their heels, odds are that the surgery wouldn't have entirely fixed it and now the ligaments would have been unnecessarily tampered with by a surgeon whose thought was "we should totally reroute those ligaments that'll do it". OP mentioned she was a marathon runner, athletic and in her early thirties - what? did her ligaments suddenly get into a state where they needed rerouting? OK sure but why, why now, etc. I feel like even a non-medical professional could have gotten closer after talking to her for twenty minutes.
I am not a doctor obviously, but I have been to some good doctors and the "imperfect information" can significantly be improved if they actually make a more clever, targeted effort to inquire, rather than just casually prescribing surgery or heavy medication. Good doctors will talk to you, actually tell you what the "algorithm" prescribes and often tell you why they think it is not the case here. The best way I can describe the difference is like talking to a customer support bot vs talking to a customer support person.
I realize this is probably extinct now here in the US because of litigation and insurance requirements but it's still that way in many countries. I am certain that good, fluid doctors there beat the algorithmic approach hands down, whereas good doctors here may be capped and severely restrained by it.
https://uroweb.org/wp-content/uploads/26-Chronic-Pelvic-Pain...
There's a rough algorithm for non-gender-specific chronic pelvic pain on p.24.
But, yeah, there's over 100 pages in there on chronic pelvic pain in this document alone. Definitely a problem that's above my pay grade.
"The algorithm for diagnosing and treating CPP (Algorithm 1) has been developed to guide a physician through the process from diagnosis to management. A physician should follow the lines by answering the appropriate questions with yes or no. By doing this the clinician will end up at a box that refers to the chapter in this guideline that contains all the information needed.
Because CPP is pain perceived in structures related to the pelvis, it is necessary to approach a patient diagnosed with CPP as a chronic pain patient. Confining the diagnosis to a specific organ may overlook multisystem functional abnormalities requiring individual treatment and general aspects of pain in planning investigation and treatment. This idea is easily recognised in the algorithm where the division in specific disease associated pain is made on one hand and pelvic pain syndrome on the other.
The algorithm also illustrates that the authors advocate early involvement of a multidisciplinary pain team. In practice, this should mean that well-known diseases, e.g. ‘true’ cystitis and endometriosis, will be diagnosed and treated early. If treating such conditions does not reduce symptoms, or such well-defined conditions are not found, then further investigation may be necessary, depending on where the pain is localised."
I would love for us to be doing a better job here.
1. The GP first blamed it on dehydration and sent me home and told me to drink plenty of water. Went back a week later and she prescribed antibiotics thinking it was some kind of infection somewhere. "Let's just try the strongest antibiotics and see".
I did the full course despite some non-trivial side effects and was still not better, but at that point my heartbeat had gotten a bit faster from the whole situation so I was referred to a cardio.
2. Seeing a fast heartbeat, the cardiologist put me, a 24-year old at the time, on beta blockers. Two weeks later, still no improvement.
3. So I was referred to a neurologist. Did a brain MRI, did not find anything so he assumed it was some kind of epilepsy/migraine combo and put me on something called topamax. Mind you, all these prescriptions were given to me within 10-15 minutes of seeing those doctors. Topamax had its own side effects and my health at that point had spiraled out of control. Reported the side effects to the neuro and he thought he'd give me one more medication to counter the other medication's side effects.
When I went back to the GP they said the whole thing was probably caused by "stress".
4. I just stopped all medication, got sick leave from my job, and went back to my home country for a couple of months. I asked my old family doctor to just do a general check-up and see if anything was up. Within weeks my situation had magically started to improve.
Turned out my vitamin D levels were at 7 (forgot the unit, but the minimum was like 30).
None of the doctors thought about it, every doctor had arrogantly assumed that the problem could only be from their own field (neuro assumed it was neurological, cardio assumed it was cardiac), and literally none of them put the slightest amount of effort into looking at the whole picture. This was in one of the most affluent areas and those were supposedly some of the "good" doctors. I am still convinced that a machine trained model would have performed significantly better than these people since they were literally like bots following a rule book.
Side corollary, if you are from a sunny country and move to a state or country in Northern latitudes, keep in mind that vitamin D deficiency can slowly creep on you and basically turn you into a moron. This should be a PSA.
I did X and now I feel better is completely meaningless without some quantitative supporting evidence providing a link between the two.
There’s a reason why the double blind trial is the gold standard of medical proof.
You may of course have this evidence, I’m just commenting on what’s written in this comment.
A billion people are vitamin D deficiency. Many are asymptomatic.
Did you have a viral illness causing your symptoms and it got better? Was it the vitamin D? It is hard to say. Some supporting evidence would be you had a previously normal vitamin D level back at your old GP.
Confusion, dizziness, lightheadedness are tremendously vague symptoms, and the workup for dizziness alone is extensive.
Put yourself in the doctor's shoes. Here is an article from the American Academy of Family Physicians on how to work-up a patient who presents with dizziness.
https://www.aafp.org/afp/2017/0201/p154.html
It's not that simple, and there are lots, and lots of things that could be going on. How do you know for sure that your symptoms were caused by Vitamin D? I don't see any evidence that confusion, dizziness, lightheadedness are common presenting symptoms of vitamin D deficiency at all. According to the Cleveland Clinic, those aren't presenting symptoms of Vitamin D deficiency. Therefore, an AI wouldn't be any more likely to catch it than a real person.
https://my.clevelandclinic.org/health/articles/15050-vitamin...
There's nothing in your comment that makes me think your symptoms weren't caused by Carbon Monoxide poisoning from running a heater in your less-than-sunny place of residence. Or maybe it's eye-strain from sitting inside staring at a computer too long. Or neck issues from sitting at a computer for too long. Or maybe you really were dehydrated, and for some reason you drink more fluids in your home country. Maybe you're smoking too much weed. Or maybe you're depressed by being away from home. Or maybe you were doing a lot of cocaine and didn't mention it. Maybe you had a stroke. Or you have early-onset dementia, or sleep apnea, or a psychological problem, or an aneurysm, or any one of a million things.
Medicine is hard. There are a lot of variables. The human body and its environment isn't a perfectly-reducible system you can step-through in an IDE. The only point I'm trying to make is that doctors are trying to figure out exactly what is going on inside of an incredibly complex system that is heavily influenced by the external environment, and they can't always conjure up a precise answer immediately.
Even if the algorithmic approach is accurate for 80% of cases, the suggestions it gives you for the 20% makes treatment extremely frustrating. If you are in those 20% then treatment by an experienced, more fluid doctor is night and day. Unfortunately, there seem to be fewer of those in the US than in other countries, probably because of litigation risk you mentioned before.
"Although the United States is renowned for its leadership in biomedical research, its cutting-edge medical technology, and its hospitals and specialists, problems with ensuring Americans’ access to the system and providing quality care have been a long-standing concern of policy makers and the public (Berwick et al., 2008; Brook, 2011b; Fineberg, 2012). Higher mortality rates from diseases, and even from transportation-related injuries and homicides, may be traceable in part to failings in the health care system."
National Research Council (US); Institute of Medicine (US); Woolf SH, Aron L, editors. U.S. Health in International Perspective: Shorter Lives, Poorer Health. Washington (DC): National Academies Press (US); 2013. 4, Public Health and Medical Care Systems. Available from: https://www.ncbi.nlm.nih.gov/books/NBK154484/
We're much better at moonshots, that just keeping most folks healthy.
The number if deaths caused every year by medical overconfidence and sloppiness is astounding to contemplate.
Most doctors are horrified at the thought of their mistakes harming a patient, and if you had a cool solution or idea to reduce that, most doctors would love to hear.
I've watched grown, experienced doctors break down and cry over what they have seen, the expectations and pressures placed on them, the type of things they've had to tell people, mistakes they've made, etc. It's not pretty.
They're not building apps for a living while working from home, they're trying to fix ill people within the constraints of human behavior and mother nature, and that is a rough job.
Many get paid a lot, many don't, but for people who went into it with the desire to help people you can't just buy off the dying kids and the lifelong smokers who killed themselves one cigarette at a time for 40-years, and the diabetic feet, and sexual assaults, and the dead bodies harvested of organs looking up at you after the surgeons have left the room, the frequent flyers, the smell of bloody feces, the smell of infection, everything else that can possible go wrong with a human being.
Not to mention the over a decade of school, and hundreds and hundreds of hours of documenting for insurance, and covering your ass for each time you get dragged into court to testify over what at any other job would be a benign clerical error.
Here's a paper from the International Journal of Surgery that talks about this issue:
"Today however there is a new alliance between the doctor and patient, based on co-operation rather than confrontation, in which the doctor must “understand the patient as a unique human being”. Thus patient-centered care has replaced a one-sided, doctor-dominated relationship in which the exercise of power distorts the decision-making process for both parties."
https://doi.org/10.1016/j.ijsu.2006.01.005
(Although if it was written by surgeons, might take it with a grain of salt.)
Definitely an arrogant physician is something that will hopefully fade into obscurity as patients become more educated, and medicine becomes more corporate 'customer-centered' and less solo practice.
With regards to patient intuition, that's actually a field of active research. When do you trust patient intuition, and when do you not?
"Intuition, like analytical reasoning, is fallible. However, we suggest conditions under which clinicians and patients should take patient intuition seriously. We invite empirical investigation of these conditions, which relate to the credibility (or accuracy) of the intuition and its meaning and significance to the patient. More generally, research is needed on non-conscious and automatic processes of decision-making and on how patient intuition can complement rather than oppose reasoned thinking in jointly shaping patient and clinician judgments, decision-making and action. Such research may help to integrate the processes of intuition and reasoning used by patients and clinicians in decision-making, with a goal of improving the patient-clinician relationship and health outcomes."
Buetow SA, Mintoft B. When should patient intuition be taken seriously?. J Gen Intern Med. 2011;26(4):433-436. doi:10.1007/s11606-010-1576-6
From the article: "The spinal consultant tested my reflexes with the side of his hand. When I asked about his reflex hammer he replied that he didn’t have one or need one — even though this is tantamount to evaluating the heart or lungs without a stethoscope."
Sometimes bonking the knee with a gizmo is just as good as bonking the knee with your hand, especially if you've spent the past 30 years bonking knees for a living.
Orient, Jane M. Sapira's Art & Science of Bedside Diagnosis 5th Ed. Chapter 1: The Art of Clinical Examination. P5.
"My original reflex hammer from medical school was simply a round rubber ball about the diameter of a nickel, mounted on a handle. This illustrates the point that any hammer is satisfactory if the examiner knows where to strike the tendon. I have even used the diaphragm of a Sprague stethoscope, and a former resident, a Vanderbuilt graduate, used her knuckle. Some physicians use the tips of their fingers, a tool that is always available."
I don't think a citation is really necessary in this case. You're tapping a tendon. That's all. You don't need special equipment. I wouldn't make the same argument for a stethoscope.
But if you want, Sapira is a really fun textbook. It's even a fun read for a layperson.
It's like the grizzled old attending who's forgotten more than you'll learn over your entire career, going about the physical exam like a master craftsman. Using their hands, eyes, ears, nose to diagnose.
I'll probably never be at that level of skill either, but man it's cool to watch and read about.
FWIW a close relative with multiple comorbidities got Covid from a hospital, likely when they decided it was prudent to cycle three different roommates through their room in as many days. Then the hospital wanted to discharge them when they were still infectious! Hospital policies are based around ass-covering and not actually stopping the spread. Never got any calls from contact tracing either. Thankfully my relative ended up beating it.