4 ms·

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 physici

by Shinkei 12y ago

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.

endtime 12y ago
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.
- Shinkei 12y ago
  >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.
  - mzs 12y ago
    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.
ivanca 12y ago
>"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 https://www.youtube.com/watch?v=KbVpCc_r9Sw)
- Shinkei 12y ago
  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.
alphaoverlord 12y ago
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-576ab231e121 https://medium.com/@davidouyang/providing-optimal-care-576ab...
deleted 12y ago
[deleted]
tomohawk 12y ago
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.
- Shinkei 12y ago
  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 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.

by Shinkei 12y ago

endtime 12y ago

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.

Shinkei 12y ago
>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.
- mzs 12y ago
  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.

ivanca 12y ago

>"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 https://www.youtube.com/watch?v=KbVpCc_r9Sw)

Shinkei 12y ago
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.

alphaoverlord 12y ago

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-576ab231e121 https://medium.com/@davidouyang/providing-optimal-care-576ab...

deleted 12y ago

[deleted]

tomohawk 12y ago

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.

Shinkei 12y ago
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 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.