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Re:Man saves wife’s sight by 3D printing her brain tumor by tomohawk on Wednesday January 14, 2015 @09:19PM (#8890543)
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 by Shinkei on Wednesday January 14, 2015 @11:31PM (#8890890)
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.

Re:Man saves wife’s sight by 3D printing her brain tumor by tomohawk on Thursday January 15, 2015 @09:42AM (#8892658)
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.

Re:Man saves wife’s sight by 3D printing her brain tumor by Shinkei on Thursday January 15, 2015 @12:36PM (#8893941)
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.