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Man saves wife’s sight by 3D printing her brain tumor

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Re: Man saves wife’s sight by 3D printing her brain tumor

#101
post #88

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…

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...

Re: Man saves wife’s sight by 3D printing her brain tumor

#102
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.

Re: Man saves wife’s sight by 3D printing her brain tumor

#103
post #88

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…

[deleted]

Re: Man saves wife’s sight by 3D printing her brain tumor

#104
post #88

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…

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 surg…

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.

Re: Man saves wife’s sight by 3D printing her brain tumor

#105
post #89

Earlier quoted context omitted.

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…

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.

Re: Man saves wife’s sight by 3D printing her brain tumor

#106
post #88

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…

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.

Re: Man saves wife’s sight by 3D printing her brain tumor

#107
post #59
post #17

Earlier quoted context omitted.

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 digre…

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.

Re: Man saves wife’s sight by 3D printing her brain tumor

#108

Earlier quoted context omitted.

> 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 anyth…

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 automa…

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.

Re: Man saves wife’s sight by 3D printing her brain tumor

#109
post #74
post #68

Earlier quoted context omitted.

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…

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 sh…

>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.

Re: Man saves wife’s sight by 3D printing her brain tumor

#110

Earlier quoted context omitted.

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 automa…

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.

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