Hacker News new | past | comments | ask | show | jobs | submit login
Man saves wife’s sight by 3D printing her brain tumor (makezine.com)
697 points by zaaaaz on Jan 14, 2015 | hide | past | favorite | 144 comments



> Balzer used Photoshop to layer the new DICOM files on top of the old images, and realized that the tumor hadn’t grown at all — the radiologist had just measured from a different point on the image.

Think about the some of the implications of that statement for a while.

It really is no wonder that the softer sciences have a reproducibility problem.


> It really is no wonder that the softer sciences have a reproducibility problem.

Even Further, I think it's also indicative of medicine being full of people that have a fatalistic, passive attitude towards their patients and medical care. Medicine and health is really hard, and so many health professionals essentially believe that the only thing they can do is wait until something horrible happens before doing anything. And as the case with this woman, when something bad does happen, they bin it in their per-organized mental filing cabinet and you're fucked if they're wrong. Much like police officers, I think many get so jaded by the job that they can't be bothered to give a shit when they really should. And I really hope technology will save us from this.


It seems that health care professionals don't have a nuanced problem solving attitude. They make a diagnosis, see how this diagnosis fits into a preconceived treatment bin, then just solve from that position without understanding what's different, what's unique to each case. And, in their defense, they probably just don't have the time for that extra work. That's where I see technology as most useful....how to automate and make more efficient the redundant parts so professionals can concentrate on the important, unique parts to each patient's diagnosis.


I come from a long line of docs, though I'm a software dev. Let me tell you that the vast majority of patients can easily be sorted into these pre-formed category bins. Rare conditions are rare by definition. Most of medicine is dreary repetition.


This ought to be highlighted, before people start an echo chamber of "doctor's don't know what they're doing!" that ultimately undermines everyone (guess what argument the anti-vaxxers use).

A string of anecdotes of "I double-checked and it turned out the doctor was wrong" remains less than a trickle compared to the flood of patients doctors have to deal with, and a tiny fraction of the hypochondriacs they must deal with. Our medical system is broken enough without adding doubts on the competence of its medical professionals.

By all means, people should double-check what the doctors say, but realize the much worse consequences of sowing doubt.


There are some useful questions patients can ask.

"What happens if we do nothing? If we do watchful waiting?"

"What happens if I don't take these meds?"

"How likely is that bad event? Tell me in terms of numbers per 10,000 people rather than percentages".


Another useful one is to ask him to explain his reasoning.

If he can't justify his decisions, then he's probably using instinct which is unreliable in the case of rare diseases, or he doesn't know how to diagnose known diseases which means he's incompetent.

Some people are offended when you challenge them for reasons for their advice, but I think that's because they aren't confident in it themselves or feel superior. Doctors shouldn't be in either of those positions and should be willing to tell you how they came to their conclusions.


Whilst on the whole I agree with you, the amount of doctors I know that would react (quite strongly) negatively to that is quite high, so anyone who takes your advice should be prepared. The most common response I've seen to your question was the doctor reminding the patient "there is always something called a second opinion", a couple of times though I noticed them taking the time to explain it.


Why is "numbers per 10,000 people" meaningfully different than taking the percentage and multiplying it by 100?


Doctors and patients do not know what you mean when you say "your risk has gone up 50%". When you say "in a group of ten thousand people we would expect 4 to experience this thing. But in a group of 10,000 people who eat peas we expect about 6 people to experience this thing".

Gerd Gigerenzer has a book explainin it better than I do.


This highlights the importance of a second and third opinion as well.

As the joke goes, "what do you call the guy that graduated last in his class at medical school? Doctor."

Doctor's aren't machines, they're more like mechanics, they see a symptom, use their knowledge to make an educated guess essentially, and then work from there. If their knowledge is soft it's likely an incorrect diagnoses could just be exacerbated by incorrect treatment.

Get another opinion, and then another, the next problem is deciding on siding with consensus or outlier.


It's exactly this attitude that turns me off of a lot of doctors. It dehumanizes the experience of being a patient. First you are put in a bin, then the doctor basically runs you through a check list.

It's really unfortunate that nearly 100% of the bins are disease or a disorder. A typical interaction with a doctor involves finding out which disease bin you should be in, and then putting you in there. Once you're there, they're not concerned with making you healthier, or looking at the variety of options that could improve your life. They're just concerned with doing the standard operating procedure for dealing with the disease. Instead of being a person, the patient becomes a checklist.

Many doctors don't even see you. They see the bin you're in, and the many potential bins you could potentially be in.

What if half the bins were about great physical health? And what if the doctors worked just as hard to get you into one of those, as they do "treating" the diseases you might have?

Ugghhh. It makes me sad thinking about how far we are from that world.


I think it is not so much the doctor that is at fault, as the system of checks and measurements that make up modern health care. The boxes are there for the convenience of management, insurance, etc, as much as it is for the doctors.


Or rare variant of common issues. Got told a story by a relative in the health care profession about a patient that complained about pains. But their location etc didn't match anything fitting the the age etc. Eventually they discovered that it was a heart condition...


There's a similarity of sorts here to airline pilots. What separates the decent ones from the great ones is how they handle the rare cases. There's enough dreary repetition that it's easy to be unprepared when it counts the most.


> Most of medicine is dreary repetition.

Hence why we can automate away most of the problems with it.


Yes, which is also why The Checklist Manifesto was so successful.


I agree with you and also believe this extends to the majority of professions. Even within software development, there are a significant number of people that will only solve the immediate problem in front of them in a stepwise manner, rather than using lateral thinking to evaluate if the problem should be solved in the way that's most familiar to them, or to look at it from a different perspective and solve another problem entirely (e.g. the root cause).

To be fair, the majority of problems are probably addressable without thinking differently. So people get into habit/routine and that's their "job"; thinking otherwise is not a day-to-day operation. To your point, automating the redundant/repetitive problems should allow for creative problem solving where machines don't yet excel.


A lot of school administrators have PhDs, but get one to tell you how they learned about some really cool experimental results at some conference (probably publicized by someone trying to sell them something, incidentally, but that's another problem) and are trying to reproduce them at their school(s).

You'll be in for a treat.

A "treat".

Fun bonus anecdote:

One of my wife's principals was convinced the prayer jar she provided for the staff was effective because over half of the prayers the prior year had been answered. When she told me that story it damn near broke my brain.


>One of my wife's principals was convinced the prayer jar she provided for the staff was effective because over half of the prayers the prior year had been answered.

Depending on the prior probability of the prayers that were answered (and those that weren't), 51% could be plenty to support the efficacy of the prayer jar.


I know, the problem is that she was evidently entirely unaware that without knowing something about the probability of "answered prayers" absent the prayer jar, the simple "over half of all wishes came true" was entirely meaningless. Without more information any number could, potentially, support either conclusion (did/did-not work). This wasn't said in jest, either, if you're wondering (I did).


This depends also on the person having the organizational position and time to do said thinking.


Couldn't this be argued of people in all professions, including software engineering? There are some who just don't care; people who just follow the process and procedure and aren't interested in the bigger picture.

While I agree that technology and automation can help, in addition we should find ways to help professionals move beyond their routines.


but software engineers 'pretty much' make at most in the early 6 figures and doctors 'pretty much' start there. i'd love to give customers max 15 minutes to tell me how they want their website only to tell them this is what they are going to get because its the standard of care.

why should a doctor care? they get paid weather you live or die. what happens to you basically has no bearing on their career. a doctor i know worked on a guy who was having chest pains but was 'diagnosed' with COPD. he was to be sent home, but that doctor refused to because of patient history: all 5 of his brothers died of a heart attack before 60. what would have happened to anyone there had he been sent home? nothing, just another heart attack death.

at least they got things right on brother #6 though.

in short, doctors have little incentive to pick up their game. the supply of doctors is kept short purposefully to ensure they make money++. Only way out of this mess is technology when people can finally take their health back into their own hands.


They'll rue the day they purposefully restricted the available supply of skilled physicians through limitations on residency programs when those pesky technology engineers perfect the doc-in-a-box.

Even worse is when some of those guys open source it and give away the software and hardware schematics, just because they hate giving $30 co-pays and dealing with deductibles, just to get an antibiotic prescription for a viral infection.

Don't make professional problem solvers see you as a problem, or you might just get solved.


Your post is a gold mine of potential points to attack but I'll save it and just focus on this:

>the supply of doctors is kept short purposefully to ensure they make money++

No. It's costly to train them, and it's hard for an average person to afford.


It's somewhat less depressing than that, from a personal point of view, at least. Most interventions carry with them pretty significant risk. Therefore the choice is not between "do nothing and see what happens, or do something with zero risk and see if it helps", but rather "do nothing and see what happens, or do something really high risk and see if it does more harm than good."

Iatrogenic disease (harm caused by interventions) is by some measures the leading cause of death in the US, outstripping heart disease and standing at more than ten times the rate of death by automobile.

Under those circumstances, not doing anything until something horrible happens is not a bad policy, and the people engaged in it are not expressing cynical indifference so much as a due awareness of the real risks involved in almost any intervention.

Which is, admittedly, kind of depressing, but for quite different reasons. Either way, technology and patient empowerment are likely to help.


You have a source for those measures?


http://www.avaresearch.com/ava-main-website/files/2010040106... puts it on #3, after heart disease and cancer. So, it may be an exaggeration, but not a huge one and certainly not an inexcusable one. It is fairly common to remember that something is way more common (or way rarer) than one would think, and then overestimate the number when trying to produce it later.

http://en.m.wikipedia.org/wiki/Iatrogenesis#Incidence_and_im... has more links, which I didn't read.


Even if true, I don't know what to make of such a statement - needless interventions for ALL diseases/causes may kill a lot more than any ONE single, narrowly defined disease/cause - that says more about the classification/definition system than interventions... it's only if interventions on any ONE disease kill a significant proportion vs the disease itself that that intervention / interventions are truly dangerous...


The problem is that it's not just "needless interventions" that can backfire. Even in situations where an intervention could unquestionably help, there's still plenty of ways for it to go wrong. The most obvious is human error -- a well-intentioned intervention that's disastrously mis-executed -- but that's just the beginning of the list, not the end.

What you have to remember is that for the vast majority of human history, medical interventions of all kinds were at least as likely to hurt the patient as they were to help them, because of our crude understanding of how the body works and how disease is communicated.

A textbook example is Oliver Wendell Holmes Sr.'s classic 1843 study of puerperal fever (http://en.wikipedia.org/wiki/Oliver_Wendell_Holmes,_Sr.#Medi...). It showed how doctors who were doing a completely routine intervention -- general examinations of the health of newborn babies -- were actually picking up that infection from babies who had it and then spreading it to others who did not, because they didn't sterilize their instruments and change their clothing between examinations.

This seems obvious to us today, but at the time it was quite shocking, because in thousands of years of medicine doctors had never sterilized their instruments or clothing when moving from one patient to another. It never occurred to them, because none of the prevailing theories of how diseases spread called for it. So untold numbers of newborns sickened and died because of well-meaning, completely uncontroversial interventions by their doctors.

Today doctors obviously do understand the role of germs in spreading disease better, and they have much improved medical technologies and practices available to them, which has helped reduce the risks of those types of interventions. But millennia of these types of unpleasant discoveries has given medicine as a profession a healthy regard for the possibility that what they think they know even today could be incomplete or flat-out wrong.


> Today doctors obviously do understand the role of germs in spreading disease better

And yet study after study of hospital acquired infections show that simple hand washing between patient examinations is abysmally irregular (between 10 and 50%.)


I'm a doctor and former software programmer, so let me offer a counterpoint:

I would disagree with your statement that medical people have a fatalistic passive attitude. In this case the decision is between 1) watching and waiting to see if the tumor grows and 2) acting immediately to take it out. The tumor in question is a meningioma, a relatively common tumor of the skull (meninges, to be precise) whose natural behavior is unpredictable (some are essentially benign, others are highly malignant). Sometimes high-risk features can be identified on MRI imaging (brain invasion, areas of tissue necrosis, rapid growth) and these will always be treated with intervention. I work at UCSF, one of the top neurosurgery programs in the world, and I can guarantee you the radiologists don't make the mistake on sizing tumors mentioned here (well maybe they do, but it is out of carelessness rather than a problem with there software. it is not hard to find anatomic landmarks to ensure you are measuring at the same level). I would argue that a small meningioma without worrisome features should definitely not be operated on because the risks of surgery are not negligible! These surgeries are no joke, they are extraordinarily complex and they are mucking around next to structures which can cause significant morbidity, neurologic deficits, and even death sometimes if they nick the wrong artery.

It is well accepted practice and backed by evidence (see the WHO:tumors of the CNS publication) that the best way to decrease overall morbidity is by watching and waiting with these types of meningiomas. This is because MOST meningiomas are low-risk/benign (they are often found incidentally during autopsies for other reasons) and the risk of adverse surgical outcomes would be high if you subjected each of these people to invasive procedures when the incidence of high grade meningiomas is low. It is a population based strategy and unfortunately on an individual level you can't predict the outcome, but that is unfortunately a problem with this data. Fortunately lots of new technologies are emerging that can tease out individual differences (the so-called personalized medicine technologies)

That being said the new techniques to map out anatomy to aid surgeons is very cool! And to be fair, it sounds like the patient in this article did not get great care and that some of the doctors were not following the standard of care (1 year between imaging is definitely too long).


I understand your rationale for the "wait and watch" option, and agree fully with it.

> "well maybe they do, but it is out of carelessness rather than a problem with there software."

I think this statement precisely illustrates the point that the parent commentator has with much of the medical community. Think about what the "carelessness" of a radiologist that you're talking so flippantly about means for a family – the anguish, sleepless nights, and feeling of morbidity and helplessness.

I may be overreacting here, but I would be extremely worried if a radiologist can be careless and ruin a year or more of someone's life, possibly forcing them into opting for a highly risky surgery. If you think there is a chance that your radiologists are not measuring things properly, wouldn't it be beneficial to start a double-checking procedure of some kind whereby each MRI is checked by 2 radiologists and a doctor (or something of the kind)?


Agreed, carelessness can cause serious issues. I see it sometimes but overall I would say most doctors (I in a tertiary care academic facility so obviously there is a bias) take their job quite seriously and understand the gravity of decisions they make.

It's proabably a waste of resources and time to have a 2-check method as protocol (doctors are already overworked). Often times it is present informally (radiologists/pathologists will often have their colleagus review problematic cases for agreement and neurologists and surgeons will frequently review the films)

What everyone should do is realize you can always get a second opinion and have another expert review the material.


On the point of 2 radiologists checking, as a routine that would be too uneconomical, so if you wanted 2 people check you'd have to get a second opinion. Most likely on your own cash, since (as far as I am aware) everywhere medicine is in more demand than supply.

However you can be assured before an actual surgery, the same films will be reviewed by many doctors. Meaning that a mistake falling through everyone's mind is less likely.

I do agree with your point that sometimes a mistake can have a large impact on people. It's one of the challenges of medicine I'm not sure anyone has a solution to. On the flip side there would be many who are properly told the correct analysis, but i guess sometimes you get unlucky and a human error is made.


Welcome to modern society. Likely the radiologist etc see so many people that caring about each and every one would result in a early retirement for exhaustion or similar.


That was the most succinct summary of the attitude i've seen many times amongst doctors. I'm saving that :D

It's always funny when someone thinks they're the center of attention... yes in a perfect world I'd remember everything and care only about you but if I do that I won't be finished my job. After a while I've noticed even as a student (and certainly picked up that a few doctors) that if you try care on a more personal level about every person, you'll be knocked down more and it'll be harder to function. Hence why I think a middle ground or even lack of care is what you see.


A more charitable explanation would mention how the prime directive of their profession is "first, do no harm": (http://en.wikipedia.org/wiki/Primum_non_nocere)


I think the other reply covers it a lot, but I find posts like yours to be very demeaning. You're essentially doing the same as someone who doesn't understand programming making declarations of how programs should be made. There is a lot going on behind the scenes and modern medicine is based on evidence, so please take the arm-chair commentary away


Like most professions, I am sure there are doctors who are like you describe as well as many others at they opposite end of the spectrum. Its wrong to generalize them all to be like this.


"Trust but verify": There are standards for tumor measurement. However, for something with major life-altering consequences, having the same radiologist compare scans is important to avoid observational variability.

A neurologist I know, she always checks the actual scans as opposed to relying on the report narrative alone. Her background is in computer science, before her MD.

The issue with new analysis tools is that most doctors won't stake their reputation by exclusion. If a doctor says the tumor isn't growing, and it is, they are liable. If a neurosurgeon removes a benign tumor, then its business as usual.


There are multiple problems. The biggest problem in my mind is that outcomes are not tracked well. That means that there's no medical feedback loop to measure the long-term effectiveness of... anything. And no good way to do retrospective studies to prove new measurement techniques. And also the laws for patient protection makes it incredibly difficult to get even anonymized data for researchers to use.

The next biggest problem is that there's a gold standard of treatment, and it's hard to get enough research to move the gold standard. In this case, the gold standard is essentially a diameter measurement, based on picking the visibly largest slice of a data set which happens to have an axis determined by the patient's somewhat random orientation in the CT scanner. Axial, Coronal, Sagittal. Those are not perfect, anatomical orientations - they're rough. Most radiologists won't take the time to create Multi-Planar Reformats along oblique or double-oblique angles. And even if they did, they'd still be eye-balling the measurement.

It's not very hard from a regulatory standpoint to create tools to allow a radiologist to click here, click there, and show a measurement of distance. Then the radiologist can look at a similar measurement from a different radiologist on the previous scan, and say whether it's bigger or smaller now. (But some PACS still don't handle anisotropic MPR correctly, which just blows my mind.)

It's vastly harder from a regulatory standpoint to say in a medical product for commercial use, "Hey, we automatically measured the volume of this tumor by automatically finding the boundary of the tissue and automatically ignoring the connected blood vessels and neighboring bone, and then we automatically found the largest cross-sectional diameter, and then we automatically compared the same measurements against the automatically non-linearly-registered longitudinal previous scan... diagnosis: the tumor is not growing, just changing shape slightly."

People think their CT scans are examined for hours by a team of doctors, like on "House." In reality, you're lucky if your CT scan gets 5 minutes of investigation, and that's by a radiologist who was trained in med school to read X-Rays, not CT. And your oncology head CT may be read by a radiologist who specializes in abdominal pediatric Ultrasound. And there's almost certainly no double-reading for Quality Assurance. And there's no rating on radiologists to tell you who has the most accurate diagnosis. And he's probably using 2D measuring tools on 3D data - because that's what they're familiar with, and that's what the reconstruction software manufacturers provide, and that's the medical gold standard. On a shared computer, where some other radiologist (or resident!) might have changed the display settings in a way he didn't notice. And he's probably been reading images for 14 hours straight.


Medicine has a data problem. It is multifaceted and far more difficult to fix than it should be. I've worked on these problems for years and it is immensely frustrating. Incentives just aren't set properly to solve them. For example with outcomes tracking, even if you had a good software system for it, you won't get reimbursed for it.


> For example with outcomes tracking, even if you had a good software system for it, you won't get reimbursed for it.

It's worse than that: It would be sued out of existence by those people who rank badly (ie, exactly those bad practitioners that need to have their asses kicked.)

In a related example: A friend wrote a book about first-hand experience in dealing with a nursing home for her aging parent. There were many instances of problems, but one in particular was that a doc had prescribed the wrong drug.

The publisher loved the book, and made the publication offer contingent on a number of changes. One of those changes: You can't implicate a person or his institution because of the liability. It doesn't matter how good your proof is, the jury system is so broken that the publisher just can't accept the risk.

Now just imagine if there were a searchable database of outcomes tied to individual practitioners or institutions.


You're not going quite far enough -

Medical Practitioners and Medical Institutions should be required by law to document outcomes, provide information about disputed outcomes, and update the information on a periodic basis.

And tampering with the information should carry heavy punishment, including jail time for the practitioner and officers of the institution.

Actions like the recent cover-ups in the VA hospitals about wait times leading to deaths should be nearly impossible to hide from the public eye.


You'd need to take account of differences in patients lest you discourage doctors from treating the more unhealthy. You also need to alter the way we define and punish malpractice.


Did not ACA put incentives in place specifically for outcome tracking? I was just talking with a guy at MIT working on post-stroke outcome tracking and automated scoring simply through the myriad of sensors on a high-end smartphone, and he mentioned ACA now or in the future will pin a significant portion of reimbursement on outcome tracking, forming the basis for his business model.


They are intended to. Even if ACA isn't the ultimate form, most healthcare reform involves paying for performance rather than procedures and this implies outcomes tracking of some kind. You've got some serious chicken/egg problems though


This. 1000 times this. It's not even about automated diagnosis. The software used by most radiologists is more than two decades behind the state of the art, lacking even basic image registration and segmentation capabilities. (source: I've worked with radiologists who review brain images at several tier-one, top-10 hospitals).

If you are lucky, some eager, tech-savvy resident will use 3D Slicer or OsiriX on their personal laptop to coregister and segment images, and do longitudinal volumetric comparison. But those basic tools are not available on the platforms used to read most images.

Major vendors are trying to catch up, but from what I've seen, demand (and thus willingness to invest) is surprisingly limited.


> Major vendors are trying to catch up, but from what I've seen, demand (and thus willingness to invest) is surprisingly limited.

You may not be able to get insurance to reimburse for it, but my impression is that there is no shortage of people ready to pay cash money, easily into 4 figures, for someone providing this service in a 'personalized medicine' context.

As far as packaging a tool-chain that actually makes these state-of-the-art measurements and applying it in this domain, it's not clear what the FDA approval / requirements would be.


Softer sciences? It was simple human error, not a failing of the science itself. I've made a more extensive post separately, but in short... regulations have slowed the advances that could prevent this kind of human error.


Most research labs can do something a little fancier but basically similar, using mutual information reduction algorithms to mathematically align images. The software is also open source (see ANTS from UPenn or FSL from Oxford).

Sadly, none of this is easily available in FDA approved packages from typical MRI/CT imaging vendors like GE or Siemens. Often need to pay extra for such features. You could theoretically walk to the surgery suites and borrow a stereotactic imaging station (basically an embedded Linux PC) and do it there, but radiologists typically aren't trained to do that.

FSL and ANTS aren't approved by FDA for clinical use so can't be officially documented in a patient's chart...

Most radiology training is based on visual recognition of abnormalities in anatomy - the "eyeball approach" has its value, which is why intelligence agencies employ human spotters and people are working on neuromorphic chips. But there isn't really a lot of quantitative/comp sci expertise among typical medical students (maybe more now, who knows?)


> the radiologist had just measured from a different point on the image.

I had a similar experience when I was having a spinal curvature corrected. After a particular xray, several people -- a couple doctors, the xray guy, a med student or two, a mix of a couple people like this -- had measured my spine's then-current curvature and had come up with a huge range; to one, I had gotten worse... to another, I had some improvement... to the third, marginally the same with a smudge of improvement.

In the end I got the most improvement I was going to get given my specific situation and I'm happy for//with that. The point is, it was literally three measurements on the same xray from which three mutually exclusive conclusions//opinions were [literally?] drawn.

I'm therefore not surprised that there is similar with tumours.


Think about the some of the implications of that statement for a while.

Hm, people with 6-digit salaries and doctoral degrees whose main job is to figure out diseases perform worse than some random dude? That's the first thing that comes to my mind.


I coauthored a paper a few years ago on the intra-observer variability of measurements of brain tumors when using the bidimensional product. An increase of 25% in the BP is taken as an indicator of brain tumor progression. We found that the intra-observer variability is so high, you can get that 25% increase purely by chance. The first recommendation of the medical team, to wait and see, is understandable.


I'm kind of fascinated that this sort of thing is still considered a publishable result. It's been known for at least twenty years that intra-observer variability is a significant factor in such things.

I'm not knocking the work you've done, but pointing out that when I was working in radiotherapy in the early 90's this kind of stuff (not on bidimensional product specifically, but whatever tumor volume measures were being used at the time) was being done. I wasn't involved in any of it directly, but recall colleagues who were, more-or-less ranting on about the degree to which chance predominated.

One issue I was more involved in was that every modality (CT, MR, fluoro...) gave significantly different tumour volumes and no one knew how to reconcile them in a clinically useful way.

Given that every measure we've ever devised seems subject to similar issues, there's an argument to be made that the very concept of "tumour size" is problematic. It seems to make sense, but the edges are too fuzzy to be very diagnostically useful in a depressingly large number of cases.


Yeah, I was surprised too when the project was pitched to me. At the time we did the article, a working group had proposed a revision to the Macdonald criteria that still included bidimensional products, and this paper was in part a response to the revision. I think that's why our article was interesting enough for publication.

This area is really neat to me because it seems at first to be easy: just take a couple of pictures, compare them, and there's the answer, right? But then you start thinking about differences in imaging modalities, contrast agents, calibration, signal processing, measurement axis, etc. and the problem becomes so hard I want to find something easier to work on.


Having been to three ultrasounds for my children, I'm amazed how casually they use a 2D length to estimate the baby's age, and therefore delivery date, and therefore when it is overdue and calls for a cesarean, etc. Your results seem like they confirm my suspicions that this can't possibly be very accurate.


With babies we know the shape. It is not as if we are likely to get a 2d slice of just an arm to estimate the age. With tumors we do not have an idea of the shape, and therefore could accidentally take a slice of the narrowest portion the first time, then the largest portion the second and assume it grew.


The real problem here is the concept of "overdue" tied to interventions. Babies are like wizards: they are never late. They arrive promptly when they intend to. And there is actually not much evidence that arriving within a week or two on either side of the "due date" has any correlation with health problems for the mother or baby.

So, a well-educated OB can be a bit casual about the exact age of the fetus because it doesn't really matter all that much.


Or maybe you're seeing just a slice of a procedure with a more complex theory behind it that you're not aware of.

Remember, being good at computers does not imply being good at medicine. This should be self-evident, but just a quick perusal of some comments here shows the contrary.


Yes, I completely agree. It's not like I'd take action on my doubts. I'm sorry if my original comment sounded critical---that wasn't my point. But it is crude, isn't it? I believe even doctors concede that these estimates are not very accurate (especially when taken mid/late in the pregnancy), and it is sort of alarming to watch a nurse snap lines across the skull cross-section freehand and use those.

I find that in general with medicine my intuition battles against what my intellect knows must be the case. It's not like anything in the body is far away. Cancer isn't even very small. Isn't it weird that it's so hard to treat? Obviously it must be, but it feels like it should be easy. The patient is a foot away. We are inscrutably powerless.

When every day you command computers and they obey, when you can summon distant people and their image appears before you, when you can instantly consult more lore than in the greatest library, when you see people casually toting radiant tablets of spellbinding powers, progress in medicine feels so slow, so analog---so carnal. I know it's wrong, and we live in a world of medical miracles, with vaccines and antibiotics and DNA and everything else, but sometimes I can't help but feel that nothing has happened since Galen. It's not an argument, it's a feeling, but one with pathos that I'm sure many share.


I was wondering the same since the Crown–rump length (CRL) measurement only has two points. One would think the spine should be included for an accurate measurement. However, that must be accounted for already. See also, "3. First-trimester fetal measurements" and "4. Assessment of gestational age" here: http://onlinelibrary.wiley.com/doi/10.1002/uog.12342/full


That is a shocking thing to say. If they had followed the wait and see approach there's a good chance she might be blind right now. This high-handedness is why I have such a hard time with the medical profession.


> If they had followed the wait and see approach there's a good chance she might be blind right now.

Operating on a brain unnecessarily has its own risks.


Indeed, as someone who's had a close family member require brain surgery in the past, I would caution people against thinking of it like any other surgery. The equivalent of "a lingering stiffness" or "Skin tightening because of scar tissue" becomes something else entirely when talking about the brain, and by extension the mind.


Hospitals can be a pretty dangerous place. You're a braver person than I if you're willing to treat a likely benign and possibly asymptomatic meningioma without fully investigating the lesion, including rate of progression.


And you don't think it may have something to do with the amount of lawsuits that is open to them if they make a mistake? We can't claim that the thought/idea of a lawsuit over a medical mistake looming is always 0, because it isn't. Even on a sub-conscious level, it affects and weighs in on the medical practitioner's diagnoses.


A terrible aspect to this is that the criteria from utilization management often list a minimum tumor size or showing growth and that same technique is used.


From your wording, it seems like your brain might have slipped gears when talking about probabilities, from 'science' mode to 'homo sapiens sapiens hardwired quantity estimator' mode.

When you say that "you can get that 25% increase purely by chance" do you mean (a) in better circumstances this should be formally impossible, or (b) the intra-observer variability is so high that there is significant (by some definition) possibility ___ of falsely detecting a 25% increase?


Wow... I really hope I didn't get to this thread too late that this just gets buried.

This is a classic example of hyperbolic reporting to try and show physicians as some kind of incompetent lot whereas this 'guy working in his basement with passion and talent' figured out how to hack the entire field of Medicine.

The fact is, nearly all Meningiomas are treated this way because they are overwhelmingly benign and the surgery to remove them is not. If the woman had lost her sight getting this surgery, then our Monday morning quarterbacking would've been entirely different... or not even reported. Also, surgeons in general SHOULD NOT improvise new techniques unless it's specifically warranted because their skill is in their muscle memory and if you upset what would otherwise be a routine craniotomy and turn it into something experimental, you are risking the chance of running into an unexpected complication.

Granted, Radiology can be imprecise at measuring progression of tumors but this is mostly because of inter-observer reliability, sampling errors, etc. that could easily be mitigated by a software-side solution. In fact, there's a lot of research into measuring lung tumors this way. However, issues related to the FDA needing to approve all the diagnostic technology involved are why these are not implemented more quickly--some nifty program to measure the volume of a tumor would probably be against the law to use in a diagnostic setting (IANAL though, I am a physician).

Edit: Another case in point, there is a great technique of placing a new Aortic (heart) valve in place using a catheter from a small puncture in an artery in the leg. This technique (seemingly paradoxically) has a GREATER risk of morbidity to the patient than the open heart surgery approach. There are many hypothesized reasons for this, but it is also a fact that the surgeons are simply better trained in the older open technique and its complications.


Whether or not physicians are incompetent doesn't seem to address the result of the very first thing they did:

> So although the first doctors told them to wait, Balzer and Scott sent the MRI results to a handful of neurologists around the country. Nearly all of them agreed that Scott needed surgery.

I've had great doctors and terrible doctors, and the notion that the guy who graduated bottom of his class in medical school can always do better than a smart guy with an internet connection just doesn't pass muster in my experience. Of course some folks take this too far in the other direction, and I have a couple (mainstream, establishment, non-alternative, affiliated-with-big-hospitals) doctors whom I trust very much...but your blanket dismissal of "guy working in his basement" sounds, well, motivated.


>A handful of Neurologists around the country.

But this is where we don't get the whole story; A handful of Neurologists could also be wrong but still have consensus. I want to see the reasoning behind their decisions because if an incomplete history was fed to these physicians, then of course they would come to the same conclusions. There could be selection bias, confirmation bias... all kinds of confounds that went into this. It's the classic '4 out of 5 doctors recommend X,' a statement that's meaningless.

Again, as I've said in a longer comment in this thread, there is a spectrum of competence in ANY field, but Medicine is very unique because there is a lot of broad knowledge that goes into the decision making process. Our jargon is immense for a reason, there's a lot of data that must be integrated. Whenever I read an article like this, I know I'm not getting the whole story because certain facts don't line up. Not to mention, I'd like to see the actual Pathology report because I don't buy the whole 'invading' the optic nerve statement. It sounds like something a surgeon would say immediately after the procedure like, "Wow, I'm glad we decided to do this, otherwise it would've been bad." It's screaming of confirmation bias.


The reason may have been that they tend to grow slowly but considering her age it was likely to grow. Another alternative to monitor or surgery may have been radiation, but again age plays a part. In the end it is supposed to be an informed decision by the patient after exploring all treatments. In this particular case there may have been high risk of leaking CSF with risk of meningitis for example with the new approach used. But we do not have all the details, it's exciting though anytime there is a new approach other than craniotomy developed.


This guy did exactly what he should have done. He harnessed his experience and passion to ensure the continued health of a loved one.

The first thing to keep in mind is that you own your body. If you're not comfortable with a prognosis or course of treatment, then don't settle. No doctor is going to care about how things turn out for you more than you. You're the one who's going to have to live with the outcome. Don't be bamboozled by big names, consensus, or big words you don't understand.

In cases such as this, it is always worth checking around and getting a second opinion - whether you tend to agree with the doctor or not.

Having dealt with several severe medical maladies, one of the main things I have seen is that there is rarely if ever a broad consensus amongst doctors about how to proceed. Doctors are often divided by organization (which hospital they're with), the equipment they have on hand, and by specialization (a surgeon will generally make a different recommendation than a radiosurgeon, who may make yet a different recommendation than someone who does chemo). Also, some doctors are stuck in the past, some are way too willing to try shiny new techniques, and many others are willing to take a more balanced view. Getting additional opinions helps you put things into context and get comfortable with your treatment decision.

Also, get opinions from doctors who have lots of recent experience in your particular malady. Don't assume that a general neurosurgeon at a big name hospital will be your best bet - getting a neurosurgeon who performs the kind of procedure you need at least once a week is going to be a far superior bet.

I've not yet regretted digging into the available research and educating myself, and then going with a doctor and treatment plan based on that. On the other hand, I've talked to several people who just "trusted the doctor" because the doctor or the facility "had a good reputation", and they greatly regretted it.


Patients should be informed and the process should be open and honest. And also, any physician who would balk at a 2nd opinion is not confident in his or her own course of action.

That said, it's very easy to get caught up in a situation that is over your head:

http://en.wikipedia.org/wiki/Dunning%E2%80%93Kruger_effect

I can tell you that it took 3 years of medical school (not to mention my heavy science undergrad) to begin to critically appraise basic scientific literature. Medical textbooks are excellent but you have to understand the jargon.

As far as how to choose the 'right' physician, I think I will write a more extensive post about this because it's something that even I struggle with... believe me, physicians and their families know (and are victims of!) the problems in Medicine all too often. But basically, it is hard. I would say, if you have a common illness... almost anyone can help you. If you have an uncommon to rare illness, you should go to a large academic hospital and read about each of the physicians in the relevant department, then make an appointment with that person. Surgery is something else entirely... if you go to a large, academic center, you will only be seen by surgeons that specialize in that procedure. There will be a breast surgeon, a 'gut' surgeon, etc. If you go to a small regional hospital, they will likely only have general surgeons who do common cases and hopefully will refer you to a larger center.

I really agree with almost all of what you said and especially the spirit of it. Just remember that it's all a numbers game and even if your physician is knowledgeable, your surgeon is skilled, etc. there will always be chance events that occur... not medical errors, just random outcomes. There is sadly never a guarantee of health.


I completely agree that finding the "right" doctor can be very difficult. The large academic hospitals are often a good bet, but there are also, depending on what ails you, specialist hospitals that can be much better, as they tend to see many more of the specific case. You may very well be sent to the resident expert at that hospital, but that expert may be far from expert when compared to other facilities.

In one case I am familiar with, someone with an acoustic neuroma was offered treatment at a few very well known, large, academic hospitals, but those hospitals only treated about 25 or so of these cases a year. It was amazing to me that a general neurosurgeon would offer treatment when they only had ever done 20 of the relevant surgeries in their career, and not mention that there were facilities with vastly more experience. Going with a specialist hospital, the patient found a team that did a few hundred of the relevant surgeries each year and achieved a good outcome.

This leads me to think that neuro and other surgery might be better off following the regional heart hospital model so that expertise gets concentrated.


Yes, specialty hospital seems to be a great model. Atul Gawande talks a lot about this type of practice in his "Complications" book; a great read if you haven't seen it.


>"skill is in their muscle memory "

Muscle memory (Fine motor memory in this case) only develops for movements that are repeated many times per day, usually in continuous succession, such as typing, piano playing, guitar fingering, etc.

Medicine is extremely imprecise, and is understandable because our bodies are extremely complex machines; but pretending is not imprecise is doing medical science a disservice.

Just as a data point some doctors believe Fibromialgia is a fake disease, that is completly psychological, but the reason for this is because they cannot test pain and pain (and sleepiness) is the only symptom in that disease. The proble is that pain is still something subjective, even for things like amputation there is no way to actually measure pain, we just know is painful because when it happens the amputee screams -or faints-. But despite being -arguably- the most important measure in medicine we still don't know how to measure it beyond what the patient says.

Also, other reason we know is imprecise is because people recovers from things doctors didn't believe it was possible to recover (e.g. https://www.youtube.com/watch?v=KbVpCc_r9Sw)


I'll concede almost everything you've said, especially regarding our knowledge of 'psychosomatic' diseases and pain.

However, I watched part of that video and the moment you hear "doctors said I would never walk again," your skepticism alarm should go off immediately.

There is a huge spectrum of spinal cord injury and some are reversible, some are irreversible and then there's a huge uncertain territory in between. Usually these cases are the result of miscommunication between a doctor and patient. Of course, it could be that their initial doctor was incorrect or incompetent... but I think miscommunication is a lot more common.


I absolutely agree with Shinkei. I had a few more thoughts, but summarizing, I worry that this is a case of an 1) incidentally found, 2) benign, 3) asymptomatic, 4) slow or non-growing mass was removed despite the recommendations of multiple neurologists and after fishing for a neurosurgeon who was willing to cut it out.

The story starts with an accidental, incidental finding. The wife recently underwent thyroid surgery, and the husband pressures the wife to get an MRI of a different anatomical location when the patient feels well and did not have any symptoms. This mass is an incidentaloma — something found on a fishing expedition and not by looking for a particular cause to a problem. The problems with such an approach are well described in this old New York Times article, however the synopsis is such: When we look for problems with very precise tests, we can always find something to intervene upon and see something wrong. This is a problem well known in the statistics of screening tests in that even very good laboratory tests have significant harms when applied indiscriminately to everyone and everything. For people not in medicine, this can be analogous to not adjusting in frequentist statistics when one does multiple hypothesis testing and simply using one p-value of 0.05 to make decisions.

The article describes the management of a meningioma, of which the vast majority of cases are entirely non-malignant, either non-growing or slow growing, and asymptomatic (often only found on autopsy or incidental imaging). The wikipedia article on meningiomas says this:

In a retrospective study on 43 patients, 63% of patients were found to have no growth on follow-up, and the 37% found to have growth at an average of 4 mm / year.[23] … In another study, clinical outcomes were compared for 213 patients undergoing surgery vs. 351 patients under watchful observation.[24] Only 6% of the conservatively treated patients developed symptoms later, while among the surgically treated patients, 5.6% developed persistent morbid condition, and 9.4% developed surgery-related morbid condition.

The very fact that the article mentions the surgeon thought that a partial resection of the mass was a success suggests that there was little to no concern for malignancy. One does not try to take out only part of a malignant neoplasm (with the potential to grow significantly) without offering chemotherapy or radiation as adjunct therapy. In fact, I would rather argue that the husband’s big triumph was realizing that the two MRIs had shown the meningioma had little to no interval growth — and such a conclusion would recommend against rapid, aggressive surgery.

From all appearances, the article suggests the wife did not have any symptoms. She could have had the meningioma since birth — a harmless birthmark that was hidden until she underwent a superflous but expensive and highly sensitive imaging test. While it is true the meningioma is close to her eye, I would be surprised if a surgeon could intraoperatively tell the progression of the mass more than multiple MRI imaging studies. While it is true that there is always a small risk that a meningioma will grow, the slow progression on MRI suggests to me that symptoms would only slowly occur and there is a low likelihood that she would ever need emergent surgery. Finally, surgical resection causes inflammatory changes in the area which could exacerbate mass effects at the site and there is a high chance that it would come back (particularly with a partial resection).

https://medium.com/@davidouyang/providing-optimal-care-576ab...


Thanks for this information. I like your Medium article.

Radiologists strive to mitigate the inherent problem of incidentalomas by using evidence based guidelines and attempting to rigidly adhere to them... but all too often there are competing interests such as misinformed physicians and patients, fear of malpractice, ego or even pure stubbornness.


We do not have all the details from that article. It might have been causing headaches or double vision for example. Partial resection was likely very good here. It's generally very slow growing. If it had grown to cause trouble later nuclear surgery could have been a more appropriate option at that point. The craniotomy approaches are what have those percentages you outlined, loss of vision, smell, or taste, as well as difficulty with speech can be complications depending on the approach used. Basically the brain has to be moved away and that causes trauma to nerves as well as which facial muscles need to be cut depending on the approach.

This new approach is intriguing. Expected anatomy would have a wrinkle of the dura near there which should lead to relatively small risk of CSF leak following micro surgery. This could prove to be a very good and more common approach in fifty years.


Hi! I'm a radiologist. Don't know if there are any others commenting in this thread. My 2 cents:

The worries you outline in your first paragraph are 100% accurate in this case. The article is crap.


This is an amazing story - and pretty much my worst nightmare. Not necessarily cancer itself, but the feeling and anxiety that you're not being treated and taken care of properly and that someone might be missing something. That doctors are (rightfully) unable to pay proper attention to everyone and everything just due to the sheer number of patients they must see. I know I'm prone to hypochondria, and it doesn't help to read things like this.

I can't wait for a world where we can constantly monitor the body easily, and abnormalities can be detected quickly and unequivocally, and even have software that can aid doctors in diagnosing.

I've read articles where doctors approach such ideas with skepticism, saying that more data isn't necessarily better, which surprises me very much. How can you look at two data points on a curve and guess what the curve looks like?

Anyone else feel similarly?

----

edit: I see false positives and the cost of dealing with them brought up often in the replies - I think this is an issue exactly /because/ we suck so much at diagnosis.

The argument that what you see may be wrong, therefore you must close your eyes just blows my mind. So you'd rather base timely detection of true positives on random chance?

Maybe if we saw these false positives much more often then we could observe the false positives properly and know how to identify them and improve diagnostics. Or maybe we'd be able to know better when intervening would be more harmful than not intervening. That an intervention would be harmful should not affect the choice to monitor.

And then there is also the issue of the diagnosis itself being potentially harmful (full-body CTs etc) which is equally terrifying and even more conflicting. We can also improve there too.

In any case, this was supposed to be more about the nondiagnosis anxiety, but I'm not unhappy with where this discussion went.


>That doctors are (rightfully) unable to pay proper attention to everyone and everything just due to the sheer number of patients they must see.

Why are we excusing this? This is an allocation and resource problem.

Frankly, I never understood why I need to schedule an appointment with a doctor and also visit a pharmacy to get drugs like anti-acids, allergy medicine, short doses of painkillers, antibiotics, short doses of anti-anxiety drugs, anti-depressants, etc. My doctor spends, what I imagine, most of his time on trivial issues and I sympathize with those who have non-trivial issues. It doesn't seem fair to them that they get the same 30 minutes I get for my minor issues.

I think society needs to ask itself if we need a full-fledged doctor for many of these tasks. The politics of healthcare are really ugly. Sorry, but a lot of this level 1 stuff could be done by a non-expert. I should be able to just buy these things. Or, at worst, pharmacists should be able to prescribe this stuff. The system as-is is designed to maximize labor, thus billable hours, for doctors. Its a mess when it comes to actually providing care.

I understand there's potential for abuse here but I kinda don't care. In my society you have the freedom to stuff your face with Big Macs 3x a day, smoke, become an alcoholic, and soon smoke pot all day. Those all have major risks and are completely legal and mainstream. Yet when I want to heal myself, suddenly the regulators, rent-seekers, and moralists come out of the woodwork.


Devil's advocate: one man's cure is another's demise. The vast majority of people know how to regulate their consumption of those not-so-bad things, but regulating their consumption of healing technology without understanding the potential downsides is what the powers at be are concerned about.

But I generally agree with you, it is an allocation problem, and the best way to allocate resources is removing arbitrary barriers to trade and promoting specialization. We're overly concerned about what might kill us and hardly concerned about improving the overall quality of our lives. The latter makes the former easier to deal with, but the need to feel safe and taken care of trumps freedom, I guess.


I've had stomach trouble my whole life. It was a Big Deal for my uninsured parents to get me Zantac. It involved a script from a specialist and paying out the inflated cost at the pharmacy. This was done for my safety, afterall, the industry and doctors were worried about risk, right? I'm just a dumb patient. What could I know compared to the experts, right?

Zantac can now be gotten OTC for next to nothing. Its completely safe. There was no patient risk for this drug. Same when I had to ask a doctor for Claritin. It also is safe as an OTC drug now. Meanwhile, we have research that shows that even a slight overdose of acetaminophen can seriously damage your liver.

The whole system is about maximizing profits for healthcare. It has very little to do with outcomes or patient safety. This is why so many people aren't getting the care they need. The industry is too busy creating "make work" for profits.


I share your concerns with the US medical system. It is a bunch of busy, reasonably bright people caught up in an insane circus. It on average produces adequate care, but you shouldn't expect much more. Having an active and informed advocate can make an enormous difference.

On the other hand, I agree that more data isn't necessarily better. There are plenty of examples. E.g.:

http://www.bloomberg.com/news/2012-05-21/prostate-cancer-tes...

If you do early prostate screening, you get worse medical outcomes than when you don't screen. Or consider whole-body scans:

http://www.radiologyinfo.org/en/news/newdetarget.cfm?ID=5

They will detect a lot of stuff that doesn't matter, but proving that it doesn't matter will be expensive and possibly harmful.

You see a similar phenomenon in investing. As Fooled by Randomness explains well, for most people the best strategy is to set your investments and look at them very rarely. If you watch the investment news all day and trade actively, you may not do better, you could easily do worse, and you'll certainly be much more stressed. But still, there is an endless supply of day-traders.


Brazilian here (and surprised to see they used Brazilian research software in a top HN story!). Couple years ago, my wife had a mass on her throat that turned out to be thyroid-related but (thankfully) benign.

I had the EXACT same feeling as you, and feel we're copying the US in only the wrong aspects. "A bunch of busy, reasonably bright people caught up in an insane circus" sums it up better than I could. I'll digress here and vent about another aspect of it, but I liked your links about too much data, thanks.

Not sure how it is in the US, but what is strange for me here is that it's not only about cutting-edge tech, even old stuff (Email? Messaging of any kind? Hell, phone calls!) is not really used by our hospitals and doctors.

Here, if you do any type of imaging exams, y'll have to wait a few days for the results, get them on the lab - physically -, schedule another doctor appointment, wait an hour or so in the waiting room just so your doctor can take a look at the images and tell you, basically: "Ok, you're fine", or "Hmm, I need these other exams to be sure. Here, take this piece of paper where I describe what I need and get it done".

Seriously, we use instant messages delivered to phones all around the world simultaneously to share pictures of ourselves, of our cats, dogs and dinners, just for a giggle. And we can't do it to save lives!


My wife is Brazilian and she actually prefers that way of getting lab results (get it yourself) to the American way: Results are sent directly to the doctor, to encourage you to schedule and pay for another doctor's visit to have the results read to you by a nurse.

In her opinion it was a violation of patient rights when we were unable to retrieve some lab results directly from the lab. In order to do that we would have to file some paperwork with the lab company and get the results mailed to us in 3-4 weeks.


You probably don't want sensitive medical information in unsafe messaging systems.


Yeah, I thought about that too, but I'm pretty sure that there are lots of cases where you don't care.

In our case, I know we would both EASILY take that trade off. Sending her imaging exams via, well, whatever really, on the same day, and get SOME answer. Instead of waiting anxiously for days and then hours at a hospital waiting room, stressed out and missing work.

Yeah, I'd take that any day for most things.


Historically I have fallen into the "don't do unnecessary tests" camp, but I would be willing to consider an alternative viewpoint. Perhaps what is needed is continuous monitoring of biochemical data from volunteers longitudinally to help us understand if any of that data is actionable in a way that reduces suffering or prolongs life. I think the right sensors have not yet been invented for this purpose, but they are probably getting close.


You're not alone. I agree with you and a very wealthy friend of mine who owns his own company bought an MRI machine for his employees and had it installed in the building he owns.


paradoxically there is also a risk involved with false positive diagnosis (be it unnecessary procedures, CT scans, surgeries, anxiety etc.) Also the detection window can be small from detectable to symptomatic for (especially) aggressive tumors. An example is the very difficult discussion on general population mamma carcinoma (breast cancer) or colon cancer screenings.

However being well informed and questioning everything is the very best way to be a patient.


Wait, does he actually run a medical firm that is licensed to use the MRI machine, or did he just buy one outright? I was told that people couldn't just buy one, you had to represent some kind of medical entity to be able to purchase one.


Did they give a reason?

I can't think of really bad stuff to do with it (except very locally to my own building, and it's not like those are very mobile), and except maybe impersonate a medical entity and rip people off.


Interesting article, glad the operation was successful.

The most interesting part of the article is not the advance in technology (nothing new, we've been using 3d prints as models for complicated fractures / bone tumours or even custom prostheses for years (academic centre)) but the low use rate of this technology by most hospitals.

The trick with overlaying follow-up scans is called image fusion and is easy and can be done by one-click applications (for example http://www.blackfordanalysis.com/) but outside of lung noduli i know of little clinical use. I've seen these types of mistake made before and trying to introduce it locally. Image fusion is also an awesome surgical procedure analysis tool (both for research and clinical applications), complimentary to the standard PA examination.

The patient education part is enormously helpful in practice. Cost per patient is however still high quite high for large models. For example a cardiac tumor model was printed with transparent plastic for around 500e. Our bone models luckily are a lot cheaper (non-clear plastic). When the price comes down i hope acceptance will improve.


@jepper I agree with your comments and to add to what you said, what really stuck out for me was how receptive the doctors were to his analysis. I didn't pick up any kind of resistance by the medical professionals to this guy's analysis.

Also, I have a chronic condition and this comment from the article is just so true.

"Scott’s recent thyroid surgery had taught them that getting the best care requires being proactive and extremely well informed. "


The article did mention that he contacted a number of doctors around the country, and it didn't sound like he had a horde of them competing over who would have the opportunity to perform the operation, just the one guy at UPMC.

Plus since he had done a lot of research and "shopping around" for the thyroid procedure previously, he probably had a good idea of how to navigate the medical system to do this sort of thing.


>The trick with overlaying follow-up scans is called image fusion and is easy and can be done by one-click applications

Just wanted to point out that image fusion is far from easy. The brain is easier than most areas of the body because the skull provides a good basis for performing a registration, but even then the brain has some small room to shift and you can't get a perfect alignment with only rigid transformations, especially when you're dealing with tumors.

For most other parts of the body you have complications like organs shifting around, gas passing through the digestive system, patients being in slightly different orientations, etc. In these cases you most definitely need to use some kind of deformable registration, which is far from a solved problem, especially when you have things like tumors changing shape/size or even appearing from nowhere from one scan to the next.


Yes it was a bit of a generalization, but i mean the practical use of the tool. The technology behind it is wonderful! For my specialty its relatively easy (bone being a rigid body). But this type of software already works quite well for lung, liver etc. With careful manual alignment it can work for soft tissue sarcoma (muscle) and other types of more movable tissue, providing a quick overview. Volume measurement is also an option. But as you say its always complimentary to standard workflow.


Yeah, I wasn't trying to be disagreeable, just pointing out that this is a very active area of research still, and there is always room for improvement. I work mostly with segmentation and shape analysis instead of registration, but I am involved with a project on multi-modal image fusion, which is even harder (and more interesting).


I've done a lot of work on multi-modal registration and would be interested in talking to you about this. It's an amazingly hard problem and I see a lot of wheels being reinvented whenever I look at what other people are doing.

My own work has been mostly commercial and so under NDA or otherwise unpublishable, but is primarily based on applications of the pseudo-correlation algorithm (Radcliffe, Rajapakshe, Shalev, Medical Physics, vol. 21, No. 6, pp. 761 769, June 1994.) I can be reached at tradcliffe at predictivepatterns.com if you're interested.


Awesome, we use a lot of PET/CT/MRI fusion imaging for computer assisted surgery and have an EOS scanner (statistical shape modeling). Just really awesome tech. Good ultrasound -> CT fusion would, I think, be indeed be a major breakthrough, allowing easy matching / guided procedures everywhere in the body but also for us as a secondary check on CAS / robotic accuracy.


Even without physiological changes, multi-modal fusion is a made more difficult by non-rigid spatial transforms inherent to some of the modes (e.g. CT quite accurate spatially, but MR is certainly not, and can vary with pulse sequence also)


Great story--I think one thing to highlight is 3D Slicer (the publicly-funded open source medical imaging tool used for all this):

http://www.slicer.org

More doctors should be using tools like this. Hopefully stories like this will help to overcome the inertia in adoption.


Seems like I should probably use this thread to plug my startup. We are building a web interface for simple 3D modeling from CT and MRI data (https://www.prevuemedical.com/).

Medical modeling software (e.g. Mimics by Materialise, Slicer) is mainly built for biomedical engineers, rather than radiologists. Our goal is to be Tinkercad to their Autocad. 3D Systems also offers Bespoke Modelling (http://www.3dsystems.com/ja/solutions/services/bespoke-model...) but their emphasis is on visually appealing color models rather than accurate tissue segmentation and anatomical reproduction.

We're really at a turning point for physical reproductions of anatomy. One-off cases are turning up all over the world for various surgical planning/training cases but it's not quite clear whether or not they improve outcomes. Some labs and hospitals are doing good work but we need large patient trials to see if physical models actually help reduce operating room time or recovery time. With positive findings hopefully we will see dedicated insurance reimbursements for surgical planning models. Maxillofacial applications are way ahead in this sense.

One thing that's interesting is that the FDA considers 3D printed anatomical models similar to hard copies of X-rays, and so they are not specifically regulated yet. I expect the regulations to become more onerous, though.


This makes me doubt the reliability of cancer diagnosis:

>They were understandably terrified, but neurologists who read the radiology report seemed unconcerned, explaining that such masses were common among women, and suggested Scott have it checked again in a year.

Yet at the end of the article they say

>if she had waited six months, she would have had severe, and possibly permanent, degradation of her sight.


> explaining that such masses were common among women, and suggested Scott have it checked again in a year.

I know this sounds insane, but menigiomas (which I'd guess is what the neurologist suspected it was) are almost always benign and shockingly common - many post-mortems find these guys just kind of hanging out in/around the brain. The corollary is that any kind of cranial surgery has enormous risks. Point being, if a doctor sees what appears to be a (surprisingly) common event on a chart, they're not going to necessarily recommend further action other than observation UNLESS there's a change to the patient (which, as kitbrennan pointed out, almost certainly accompanied the "get it checked again in a year").


It's important to remember that this article is probably simplifying the doctor's advice. I imagine the neurologist ended with: "However, please come back immediately if you feel worse or notice any other symptoms."

Obviously that 'may' have been a critical delay, and therefore Scott and her husband were certainly right in hindsight to be proactive about Scott's health.


You should doubt everything when it comes to your life. Question everything and leave no stone un-turned.

I know this first hand. Doctors, very smart, just don't know everything. You really have to bone up on whatever is ailing you and really shop the knowledge base that is out there.


I can't be sure from just a photo, but the I suggest that the procedure wasn't completely without side effects. Her left eye is not symmetrical with the right, and the left eyebrow is elevated. This could represent some degree of peri-orbital muscle dysfunction due to the procedure damaging the nerves that supply those muscles. This could improve with time, not sure how long after the surgery this photo was taken. Even if it doesn't, you could say it is a minor side effect compared to losing your vision, but as Shinkei and others have pointed out, it isn't clear whether the vision was really in danger. Takes some of the shine off I suppose...


This is a cool application, but 3D reconstruction of DICOM images isn't that new. For example, there is the Mimics commercial package that is on version 17, and similar things are actually quite commonly used by radiologists. (see http://en.wikipedia.org/wiki/Mimics)

Patient-specific surgery, and computer analysis in diagnosis and treatment is going to be very big (I'm betting four years of my life in doing a PhD in the field). Its always interesting when there is patient or family led efforts in the field, but this kind of thing was cutting edge in research probably 10-15 years ago (I 3D printed aortic aneurysms as an undergrad in ~2009 for a surgery planning project, and it wasn't a new thing then - example http://link.springer.com/article/10.1007/s100160010054).

Its curious then why 3D printing for surgery planning hasn't become the standard-of-care yet. My instinct is that we'll see more improvements to 3D rendering, planning, and simulation on the computer, but a physical model is not that additionally helpful to surgeons for most cases. Especially considering increased cost and time compared to a computer model.


> Scott’s recent thyroid surgery had taught them that getting the best care requires being proactive and extremely well informed.

So, if you go to a manufacturer or a printer, and you can just leave your order and be assured you'll get excellent service, this has tremendous value. This is first rate service. It saves your mental energy and it might even save you money in the long term. Now, if you go to a manufacturer or a printer, and you know that you have to be informed and stay on top of them, you should know that you are getting crappy service. At the very least, you should be getting a discount of some kind for the hassle.

Healthcare in the US often means paying a lot for crappy service. It's even worse than dealing with mediocre manufacturers or printers, because of market distortions and lack of transparency in the system.

If anyone wants to help this doctor out with spreading the above message, this might be a way to show off your chops as a web designer or a marketer. He's local to the bay area and his website is here: http://www.truecostofhealthcare.org/

(Disclosure: He's my former PCP)

EDIT: On the other hand, it is a credit to the doctors involved, that they welcomed the husband's input and expertise.


In a similar vein, the chap in this article 3d printed his kidney stone to help surgeons:

http://www.bbc.co.uk/news/uk-england-hampshire-30801273

Ironically, he passed out due to the pain from his kidney stone when presenting to surgeons on the benefits of 3d printing.


My recommendation: If you ever have a CT scan, ask the imaging facility for a copy of the data. Make an archival backup for posterity and then download some free tools and spend some time exploring and learning about your own body.

The DICOM format is widespread and you can find plenty of tools with a quick search.


Wish this was not only widespread practice for imaging but any medical test data.


I'm wondering. Does anyone know if the tumor was cancerous or benign? They say that a lot of women have this, so I'm thinking it's benign like an adenoma, but in which further growth can cause later complications.


Wow. Amazing story. Moral of the story : If you can, ask for a second opinion!


Beware, my mother, dissatisfied with the first answer[1] asked for a second one, the next doctor told her exactly what she wanted to hear[2] but underestimated the risks. Massive internal bleeding during the operation => emergency decision => remove the whole organ. Like precogs, we may need a 3rd opinion as arbiter.

[1] situation is very complex, probably need to remove part of an organ [2] the he could fix the issue without ablation

le: simplification


Thanks for the reply. You're making a very valid point!

First : Sorry to ear what happened to your mother.

Doctors telling what we want to ear is also a problem! Mostly, I believe, because when something like a brain tumor is threatening your life, you might not want (and know) what is best for yourself. Doctors can be influenced by their patients.

As you stated, the second opinion can be wrong and it is very hard for the patient to know who to believe. I wish everybody could have a little help from a friend with some photoshop & 3d printing skills!


Luckily, if I may say so, it wasn't that crippling, the damages were more emotional. Waking up to this kind of news unprepared (and they completely dismissed their lack of judgement, ha the sacred doctor) is a pretty big blow.


I've been skeptical about 3d printing's real uses and how it might be toy but this sold me.

Great solution and ending. Hope it helps others too.


It's reassuring of the human condition that these two stick with it through thick and thin. Charting a course to success even when the medical expert(s) said otherwise.


Redundant/distributed/crowd-sourced diagnoses? Instead of a single radiologist, fan it out to many.


This is truly amazing. Someone needs to fund this guy :)


What's alarming is that a guy in his spare time can come up with a better diagnose than a 'certified professional'...


The doctor spends all day getting other cases right, which doesn't make for as interesting of an article. Expecting them to be infallible is unfair.


He had spare time, the doctor didn't.


The doctor had work time, and ostensibly an entire eduction specifically for this job. The doctor was still at an (extreme) advantage.


Not only spare time (if it can even be called that), but SERIOUS motivation considering his wife's life was in danger.


[flagged]


"Person saves spouse's x" doesn't have quite the same ring to it, does it?


What is wrong with you? It's such an inspiring story!!


Alternate title: Man encourages his wife to go through unnecessary surgery for a benign and symptomless meningioma after she had an unnecessarily complicated thyroid removal in order to avoid a 4cm scar on her neck. Oh, he also made a shitty 3D model of her skull in the process.


I made a more extensive comment separately, but this is exactly right. The physicians were doing the appropriate thing in this case, but if you search hard enough you are going to find someone who will indulge treatments outside the standard of care. If she suffered a major complication or death, there would be no shortage of physicians lining up to question why he took a risk on a benign lesion.

The supposed 'invasion of the optic nerve' is dubious at best. Meningiomas only 'invade' if they are malignant and this would've required radiation therapy, which she did NOT get. Therefore, the pathology must have shown a typical benign meningioma. I'm thinking this surgeon got into some fibrous tissue or mass effect on the nerve... certainly could've caused a complication in the distant future if it grew, but you are dealing with probabilities now and not certainties.


Ha ha, no shit. My wife had her thyroid removed last year. You don't even notice the scar unless you look really close, and she was back to work 1 week after surgery. The part that takes the longest is getting the thyroid pills dialed into the proper dosage; the surgery is fast with a quick recovery. Robots are not needed for this.

There was a recent article saying the biggest factor for successful surgery is the quantity the surgeon has performed. In this case he had done thousands, and did plastic surgery too (hence a minimal scar).


Did we read the same article?

The neurosurgeon discovered that the tumor was starting to entangle her optic nerves, and told her that if she had waited six months, she would have had severe, and possibly permanent, degradation of her sight.

Because I'd really like to think you're being this insensitive out of ignorance, rather than malice.


I have to say that MRI is usually very good at detecting optic nerve impingement, so this 'crucial' point which is reported third hand deserves some skepticism.


Skepticism, or casting aspersions? The first is smart, the second is just jerk behavior.


Alternate Title: Surgeon willing to perform experimental surgery oversells the necessity of his surgery.


Yes, we read the same article but we probably did not graduate from the same medical school. I noticed that the tumor did not grow between MRIs done "a few months" apart so the imminent danger invoked by the surgeon that did the highly unusual intervention looks to me like ass covering and justification for whomever paid for the intervention.

There's also the publication that printed the article - a magazine known for its superficial interest in new and shiny tech, not its scientific accuracy. There's nothing in the very low res plastic 3D model that was not already visible on the radiologist's computer monitor.

I'm being this insensitive because I'm an adult and I let reason ruin a good story.




Guidelines | FAQ | Lists | API | Security | Legal | Apply to YC | Contact

Search: