Man saves wife’s sight by 3D printing her brain tumor
makezine.com
makezine.com
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.
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.
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.
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.
And yet study after study of hospital acquired infections show that simple hand washing between patient examinations is abysmally irregular (between 10 and 50%.)
http://en.m.wikipedia.org/wiki/Iatrogenesis#Incidence_and_im... has more links, which I didn't read.
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.
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.
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.
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.
"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".
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.
Gerd Gigerenzer has a book explainin it better than I do.
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.
Hence why we can automate away most of the problems with it.
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.
While I agree that technology and automation can help, in addition we should find ways to help professionals move beyond their routines.
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.
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.
>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.
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).
> "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)?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?)
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.
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?
Operating on a brain unnecessarily has its own risks.
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.
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.
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.
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.
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.
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.
> 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.
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.
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)
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.
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...
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.
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.
The worries you outline in your first paragraph are 100% accurate in this case. The article is crap.
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.
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.
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.
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.
However being well informed and questioning everything is the very best way to be a patient.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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. "
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.
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.
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.
More doctors should be using tools like this. Hopefully stories like this will help to overcome the inertia in adoption.
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.
>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.
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.
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.
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").
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.
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.
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.
The DICOM format is widespread and you can find plenty of tools with a quick search.
[1] situation is very complex, probably need to remove part of an organ [2] the he could fix the issue without ablation
le: simplification
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!
Great solution and ending. Hope it helps others too.
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).
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.
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.
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.