12 ms·

Bridge to Nowhere

172 points by egorpv 2y ago

gus_massa 2y ago
> But more than this I would come to learn that that I'd fallen into a trap of my own making. I'd blame the medical doctor. In similar cases, they use misleading remarks and partial information to guide the patient in the path they prefer.
- justin_oaks 2y ago
  It seems like the doctor has fallen victim to the politician's fallacy [0], summarized well on Wikipedia as 1. We must do something. 2. This is something. 3. Therefore, we must do this. People seem to feel like there's merit in "trying something, anything" even if by trying something you may actively make the problem worse. We need to accept that we only have limited control. Bad things happen. 0. https://en.wikipedia.org/wiki/Politician%27s_syllogism https://en.wikipedia.org/wiki/Politician%27s_syllogism
  - m463 2y ago
    He also says they said they talked about things, but he might not remember.
  - lucianbr 2y ago
    It's funny to me how in tech (and business maybe?) "bias for action" is widely regarded as a good thing. It's the exact thing you are describing, but phrased differently and in a different context, everyone thinks it's great.
    - marcosdumay 2y ago
      That's because people in tech and business are overwhelmingly biased into inaction.
- deleted 2y ago
  [deleted]
keyle 2y ago
Incredibly poignant writing with such clarity. I feel truly sorry for the author.
ChrisMarshallNY 2y ago
I had pretty much exactly the same thing happen to me, in 1996. I probably had 2 days to live. Benign brain tumors are bad. They don't have to be cancer. I was given Option 3. I decided not to take it, and they were fairly confident that I'd be in a wheelchair, the rest of my life. That did not happen. As things turned out, I was OK, but it took me a couple of months to learn to walk and chew gum at the same time.
- freehorse 2y ago
  > it took me a couple of months to learn to walk and chew gum at the same time If I may ask, I am curious, how was this experience of not being able to do this and learning to do this again? We often overlook how complex doing such two things at the same time is because we master such skills quite early in life.
  - ChrisMarshallNY 2y ago
    It was basically a joke, but the tumor was in the cerebellum, which controls balance (amongst other, much more important, things). I was in physical therapy for two months, and it was probably two years, before pretty much all traces of the effects were gone. Nowadays (almost 30 years later), it's as if it never happened. I did get a cool haircut from the whole thing. Very punk.
    - hammyhavoc 2y ago
      Long may you continue to have your health and happiness. Thank you very much for sharing your story.
alexashka 2y ago
It may be a bridge to nowhere for the patient but it is a profit opportunity for hospital owners. You're just another input in their number go up paperclip maximizer - where your road leads beyond their number go up is not a concern for them.
- skeeter2020 2y ago
  Your comment hsitory shows you really seem to like this "paperclip maximizer" analogy; I'm not sure what it means.
  - deleted 2y ago
    [deleted]
  - Zircom 2y ago
    Universal Paperclips, it's a clicker game where the only object of the game is to make your count of paper clips go as high as possible. With that in mind I'm sure you can reason out his intent now.
  - DaiPlusPlus 2y ago
    The term "paperclip maximizer" is a reference to a thought-experiment explained in this 2014 interview with Nick Bostrom: https://www.huffpost.com/entry/artificial-intelligence-oxford_n_5689858 https://www.huffpost.com/entry/artificial-intelligence-oxfor... > Suppose we have an AI whose only goal is to make as many paper clips as possible. The AI will realize quickly that it would be much better if there were no humans because humans might decide to switch it off. Because if humans do so, there would be fewer paper clips. Also, human bodies contain a lot of atoms that could be made into paper clips. The future that the AI would be trying to gear towards would be one in which there were a lot of paper clips but no humans.. EDIT: While the article is from 2014, Nick Bostrom's thought-experiment dates back to his 2003 thesis: https://nickbostrom.com/ethics/ai https://nickbostrom.com/ethics/ai (props to @o11c for the correction) ----- Of course, back in 2014 was before LLMs and visual-image-generators were a thing (StyleGan's paper was 2018), but Roko's Basilisk was described in 2010, which would colour people's thoughts of "AI" back then somewhat differently to today: 2014: "AI" means perfect and unbiased reasoning ability, total objectivity (given one's axioms); it will have the ability to outthink its human operator/sysadmin and somehow "escape" onto the Internet, and make a living for itself trading its services for Bitcoin before going-on to do literally anything it wants, like hack Russian nukes to bomb the US, so a paperclip-making AI really could kill us all. 2024: "AI" means using statistical tricks to generate text which contains frequent factual errors, unsound reasoning, and reflects our cultural-biases back at us. A paperclip-making AI will be the next Juicero before running our of VC funding.
system7rocks 2y ago
Sometimes, this is the gift of having a trained chaplain, pastor, or advocate with you who has navigated these moments before. I’ve been in these moments with people in my church, and I don’t think it is always about the doctors or healthcare providers withholding info. Sometimes, you are the tenth person they have seen in a short period of time, so they are trying to communicate as best as they can, as efficiently as they can. Having someone - doesn’t have to be religious to be clear - who has been in those rooms can be helpful. They can repeat what the doctor says, because it can be so frightening and hard to hear. I have asked doctors and anesthesiologists to come back into the room and finish answering the questions. I know they are busy. But I know they want to put you at ease and give you all the info you need. - What side effects can we expect from the medication? - What alternatives are possible? What if the treatment doesn’t work? - What is the prognosis - worst case and best case? - How long will recovery be? - When can family members/loved ones see them? - Who will contact the family members during the procedure? - How soon will the patient be up and about? - Do you know the patients limits and directives - like no resuscitation? More than once, I have helped the doctors hear something that they had missed, buried in all of those charts. More than once, I helped a friend or loved one gain some clarity on why the course of action is best or whether they want to explore something else. Powerful story! And helpful language to think about them as a Bridge to Nowhere.
- IG_Semmelweiss 2y ago
  well put. In general , you want someone with experience who is also able to think clearly about the issue. But even having someone in there with you can make a huge difference. I personally know of someone who almost died in a hospital from a medical error , and survived only because a family member decided to check on him at the hospital
  - pfortuny 2y ago
    My mom almost died from a hemorrage after my birth… Mu granma was there and noticed the sheets getiting red… This was of course many years ago, no monitors etc.
- sqeaky 2y ago
brcmthrowaway 2y ago
How to avoid tumours growing in brain?
- Mistletoe 2y ago
  >Most brain tumors form in people without any known risk factors. But some factors may increase your risk for brain tumors, such as: >Radiation exposure. People who have had radiation to the head are at higher risk for brain tumors. Most often this exposure comes from radiation therapy used to treat another type of cancer, like leukemia during childhood. >Certain inherited syndromes. People who are born with certain syndromes, such as neurofibromatosis, von Hippel-Lindau disease, Li-Fraumeni syndrome, and tuberous sclerosis, have an increased risk of brain tumors. >Family history of brain tumors. Most people with brain tumors don’t have a family history of the disease. But in rare cases, tumors can run in families. >Weak immune system. People who have a weak immune system have a higher risk of developing central nervous system lymphoma. This includes people who have AIDS or who have had an organ transplant. https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=34&contentid=17820-1 https://www.urmc.rochester.edu/encyclopedia/content.aspx?con... This one is really promising: >A study found that people who walked or ran at least 1.8 MET·h·d had a 42.5% lower risk of fatal brain cancer. https://pubmed.ncbi.nlm.nih.gov/24091993/ https://pubmed.ncbi.nlm.nih.gov/24091993/
  - brcmthrowaway 2y ago
    What about smoking cigarettes?
    - Freak_NL 2y ago
      Probably irrelevant to consider, given that smoking will significantly raise the risk of a host of other deceases already.
    - daedrdev 2y ago
      Cigarettes directly damage lung tissue, thats why the cause so much lung cancer, so probably its just when the lung cancer spreads everywhere
stavros 2y ago
Was it glioblastoma in the end? The author never said.
- DannyBee 2y ago
  Yes. (I read all the articles on the blog, and it does in fact turn out to be glioblastoma)
- emmelaich 2y ago
  Yes, with round two occurring April this year. https://depth-first.com/articles/2024/04/22/round-two/ https://depth-first.com/articles/2024/04/22/round-two/
scotty79 2y ago
That's a bit harsh on the doctors. If you or your loved one have a solid mass in the brain an evening of googling can tell you that it's most likely the end of the road rather sooner than later. There's very little anyone can do to help you feel better or retain illusion of agency over your life When you are finding this out it's usually because you already have significant symptoms that progress because growing mass puts a pressure on the brain. So Option 3 is increasingly suffer what you are already suffering till death, prompt one in case of fast growing tumor, more distant in case of the slow one. If you want to do anything else the best course of action is to remove what shouldn't be there. You could in theory remove just a small bit just to find out what it is, but it won't help with the symptoms you already have and risks of biopsy are very similar to risks of surgery which will also potentially give you more information. Also the information that biopsy could provide would be most relevant in the worst case so that the surgery is done with large margins which might result with few months longer survival but way worse quality of life. So a surgery is basically a no brainer in your already terrible situation. If you are super lucky it might turn out that you had in your brain something relatively benign which, after recovery can give you at least years of normal life. Context: My partner has a large grade 3 glioma and first surgery, radiation and chemotherapy gave her 5 years of completely normal life and the second one after recurrence another year. Our approach to all of this was that no one really knows how long they specifically are going to live. And that doesn't change with diagnosis. Statistics is just that. Statistics. Calling such life bridge to nowhere is just a bleak perspective. Same could be said about every life with similar accuracy.
- pfdietz 2y ago
  > So a surgery is basically a no brainer I see what you did there.
- lucianbr 2y ago
  Your conclusion does not seem to follow from the premises. > There's very little anyone can do Hence the validity of the "do nothing" option. > If you want to do anything else But you may want to do nothing. There are valid reasons for it. > So a surgery is basically a no brainer Non sequitur. Your context suggests that you think doing something is a good idea because you know of a case where it worked out. This is availability bias. > Statistics is just that. Statistics. What is this even supposed to mean? Statistics is a useful tool. You're denying it with no argument. "I don't like statistics."
Twixes 2y ago
What a harrowing account. Ended up reading all posts in the author's glioblastoma series, starting with the first one from May 2023. Devastating topic, excellent writing. I can only wish strength
- emmelaich 2y ago
  Agree, great writing. I particularly liked 'George' -- https://depth-first.com/articles/2023/08/19/george/ https://depth-first.com/articles/2023/08/19/george/
singleshot_ 2y ago
More or less, if you enter a hospital, you need a medical case manager. The case manager should be an equal or superior specialty to the treating physician. The case manager should have a medical power of attorney to make decisions concerning your care (not so much to make decisions, but to be allowed into the decision making process to advise you, and then to regulate the execution of the treating physician). In short if your doctor is not employed by you, you should be taking precautions accordingly. This is an absolutely daft situation, but it is where we find ourselves.
- notafanofrcm 2y ago
  The last case manager I dealt with (Raymond Rupert) ended up getting banned from practicing medicine.[1] To this day, he still operates and is expanding his case management consultancy service. He even claims Google Canada as a client.[2] His MO is selling people on his "exclusive network" of service providers and getting people not to trust normal doctors. He then comes up with a bunch of fake services to bill people for. He also really likes to prey on kids, because parents don't want to see their children suffer and will pay money if the kid says he's helping. Especially those that are wealthy or have trust funds. The last straw was overprescribing benzodiazepines (incredibly addictive) to people with addiction issues. He has good SEO, is incredibly litigious (why I'm posting this from a burner), and makes you feel good about your decisions. Most case managers do that. The service they sell is not better healthcare, but making you feel like you're getting good healthcare. Case managers sell you the idea that medicine is a giant conspiracy to bilk you out of your money. Then you accept paying the case manager a bunch of money, because at least *he's on your side*. Generally, the doctors I see practice medicine because they want to help people, not out of a desire to make a ton of money. Sometimes their sales and social skills aren't very good because of that. OP wouldn't have had a better health outcome from a case manager in his blog post; just someone charging thousands of dollars for needless consults. [1] https://doctors.cpso.on.ca/DoctorDetails/R-Rupert/0020809-25597 https://doctors.cpso.on.ca/DoctorDetails/R-Rupert/0020809-25... [2] https://www.cieps.com/Faculty%20bios/bio%20-%20rupert.htm https://www.cieps.com/Faculty%20bios/bio%20-%20rupert.htm
  - deleted 2y ago
kak3a 2y ago
At glance, thought it is https://en.wikipedia.org/wiki/Bridge_to_Nowhere_(San_Gabriel_Mountains) https://en.wikipedia.org/wiki/Bridge_to_Nowhere_(San_Gabriel...
- emmelaich 2y ago
  or https://en.wikipedia.org/wiki/Gravina_Island_Bridge https://en.wikipedia.org/wiki/Gravina_Island_Bridge
aabajian 2y ago
Neurosurgeons are extremely smart, hardworking, and (usually) amicable physicians. They are also in short supply and can determine whether an entire health system makes or loses money. Neurosurgery is the hardest residency, and the hardest physician career. However, this difficulty is in-part due to the bravado of the neurosurgeons themselves. During neurosurgery residency, you have to learn to be a brain and spine surgeon, undertake two years of research, learn how to do endovascular interventions, and (of course) manage all of the pre-/post- operative care including clinic. It is not uncommon for a single PGY-2 neurosurgery resident to follow 100+ inpatients. Suffice to say neurosurgeons are overburdened, yet they themselves have fought against reducing training hours. Patients can generally expect to spend less than 30 minutes speaking to their surgeon before/after their surgery. For those unaware, you can become a spine surgeon via either the neurosurgery or orthopedic surgery routes. Just my simple opinion, but I think spine surgery should be its own residency. Brains should be left to the neurosurgeons and extremities to the orthopedists.
m463 2y ago
I've known two people with glioblastoma (both deceased now). It is incredibly hard to come up-to-speed on a newly diagnosed (or newly undiagnosed) medical situation. But I think many many people will encounter it and be unprepared. They may encounter it early when a friend or family member faces the situation. Unfortunately a lot of learning happens after the fact. For example, just finding out if someone has glioblastoma can leave you physically or mentally debilitated. One of the people I knew had a biopsy, but that caused them to be bedridden without control of one side of their body. So in relation to preparation, I think people should prepare. Reading articles like this one (or his other articles) can be uncomfortable, but well spent.
didgetmaster 2y ago
The post is dated in May of this year which is now 5 months ago with no further posts. Anyone know if the author is still with us?
- madaxe_again 2y ago
  He is not, no.
  - zeroXeng 2y ago
    did he choose the eol option that he spoke about in an earlier essay ?
niceguy4 2y ago
The title reminds me of the bridge outside of LA that is a 1 or 2 hour hike to a bridge to nowhere that you can bungee off of. Pretty cool!
- ForOldHack 2y ago
  https://hikingguy.com/hiking-trails/los-angeles-hikes/bridge-to-nowhere-hike/ https://hikingguy.com/hiking-trails/los-angeles-hikes/bridge...
casenmgreen 2y ago
I've not read the article, but I understand from the comments this is about glioblastoma. I understand that these cancers requires carbs to grow, and going into ketosis - which is to say, fully depleting the body of carbs and having none in your diet - is a highly effective coping mechanism. The cancer basically stops growing. Of course, you then have to live on protein and fat, but better that, than death.
freehorse 2y ago
Anecdotally, when negative scenarios are probable, a strategy of the medical system is hiding them from the patient (until more progress is done, at least). I wonder if that is still a common occurence in the first place, and if it is, I wonder if it is really backed up by scientific evidence of this improving prognosis and outcome of surgeries (though in cases like OP's this seems sort of irrelevant anyway, same with types of terminal cancer), or it is just part of the convenience of the medical system, or part of the medical professionals overworking and not having time to explain and have a more involved discussion with patients (or maybe also not having people with the proper psychological training assigned to actually do that and guiding patients to face the death prospect).
- 4star3star 2y ago
  I have the same questions. If it's known that disclosing certain information will stastically lead to worse outcomes due to patient reaction, what do you prioritize - better possible outcome or patient autonomy over their own life decisions?
- rootusrootus 2y ago
  Probably situational. Maybe in-person it is more likely to be held until diagnosis is firm? Anecdotally, the raw results that get published to sites like MyChart are pretty to-the-point if you have any idea what you're looking for, and sometimes even for laypeople. My mom had a chest x-ray and the radiologist report came back with a great big, red, bolded "THIS IS A RED DOT CASE" stamped on it. The doctor called within a matter of minutes of that result being published. I had just barely finished googling the likely meaning of that phrase when the doc confirmed it.
zombot 2y ago
I'm not normally one to read "my road through pain and suffering" articles, and to be fair, this isn't one. And I sure am glad I read this, just in case it should ever be my turn.
- zeroXeng 2y ago
  my takeaway from such essays is to gain perspective and hopefully keep that perspective in the rest of the moments we have.
gregfjohnson 2y ago
I work at a medical device company that specializes in radiation treatment for brain tumors. This thoughtful and profound essay brings home the lived reality of the patients who are treated by our systems. The writer speaks lived truth that has a tone of heft and substantiality. Human life is a fragile and temporary gift. Most of us are lucky enough to have a few moments of transporting and profound beauty and joy. While life's journey has an inevitable end for all of us, we can help each other in innumerable ways to make the journey more bearable, and at times joyful. I'm an old guy, and have an artificial hip and cataract implants. I'm deeply grateful for the quality of life I've been gifted to receive by the medical people who make these kinds of things possible. I hope that the brain treatment system I work on will be a similar gift to the lives of at least some of the patients who require that kind of treatment.
- simonebrunozzi 2y ago
  What a beautiful, beautiful comment. Thanks for working on a brain treatment system. Who knows, one day I might benefit from it.
- zeroXeng 2y ago
  >Human life is a fragile and temporary gift. Most of us are lucky enough to have a few moments of transporting and profound beauty and joy. >While life's journey has an inevitable end for all of us, we can help each other in innumerable ways to make the journey more bearable, and at times joyful. very nicely articulated. thank you. the series of essays is moving and profound. what we take for granted is a miracle and we dont realize it, and are caught up in trifles. thanks to whoever brought this our collective attention.
silexia 2y ago
Super important to investigate all medical diagnoses and treatments yourself. I was diagnosed with stage four hip osteoarthritis at age 36 due to some ongoing pain in my hip I had while playing golf. The Harvard educated doctor treated me brusquely when I tried asking more questions. He told me to immediately get a hip replacement. I did a bunch of research and decided to try lifestyle changes first. I quit playing golf and running. I took up cycling and taking anti inflammatory supplements (no drugs). In a couple of months, the pain was mostly gone. Now I have no pain at all and do a large variety of farming manual labor work and am roofing my own house. Doctors see you as a paycheck. Always do your own research into diagnoses and alternative treatments.
deleted 2y ago
[deleted]
gcanyon 2y ago
This is a surgery I absolutely would not have. I would not bet a few healthy months to roll the dice on a few more healthy months against immediate disability for the rest of my short life.

172 points by egorpv 2y ago

> But more than this I would come to learn that that I'd fallen into a trap of my own making. I'd blame the medical doctor. In similar cases, they use misleading remarks and partial information to guide the patient in the path they prefer.

justin_oaks 2y ago
It seems like the doctor has fallen victim to the politician's fallacy [0], summarized well on Wikipedia as 1. We must do something. 2. This is something. 3. Therefore, we must do this. People seem to feel like there's merit in "trying something, anything" even if by trying something you may actively make the problem worse. We need to accept that we only have limited control. Bad things happen. 0. https://en.wikipedia.org/wiki/Politician%27s_syllogism https://en.wikipedia.org/wiki/Politician%27s_syllogism
- m463 2y ago
  He also says they said they talked about things, but he might not remember.
- lucianbr 2y ago
  It's funny to me how in tech (and business maybe?) "bias for action" is widely regarded as a good thing. It's the exact thing you are describing, but phrased differently and in a different context, everyone thinks it's great.
  - marcosdumay 2y ago
    That's because people in tech and business are overwhelmingly biased into inaction.
deleted 2y ago
[deleted]

keyle 2y ago

Incredibly poignant writing with such clarity. I feel truly sorry for the author.

ChrisMarshallNY 2y ago

I had pretty much exactly the same thing happen to me, in 1996. I probably had 2 days to live. Benign brain tumors are bad. They don't have to be cancer. I was given Option 3. I decided not to take it, and they were fairly confident that I'd be in a wheelchair, the rest of my life. That did not happen. As things turned out, I was OK, but it took me a couple of months to learn to walk and chew gum at the same time.

freehorse 2y ago
> it took me a couple of months to learn to walk and chew gum at the same time If I may ask, I am curious, how was this experience of not being able to do this and learning to do this again? We often overlook how complex doing such two things at the same time is because we master such skills quite early in life.
- ChrisMarshallNY 2y ago
  It was basically a joke, but the tumor was in the cerebellum, which controls balance (amongst other, much more important, things). I was in physical therapy for two months, and it was probably two years, before pretty much all traces of the effects were gone. Nowadays (almost 30 years later), it's as if it never happened. I did get a cool haircut from the whole thing. Very punk.
  - hammyhavoc 2y ago
    Long may you continue to have your health and happiness. Thank you very much for sharing your story.

alexashka 2y ago

It may be a bridge to nowhere for the patient but it is a profit opportunity for hospital owners. You're just another input in their number go up paperclip maximizer - where your road leads beyond their number go up is not a concern for them.

skeeter2020 2y ago
Your comment hsitory shows you really seem to like this "paperclip maximizer" analogy; I'm not sure what it means.
- deleted 2y ago
  [deleted]
- Zircom 2y ago
  Universal Paperclips, it's a clicker game where the only object of the game is to make your count of paper clips go as high as possible. With that in mind I'm sure you can reason out his intent now.
- DaiPlusPlus 2y ago
  The term "paperclip maximizer" is a reference to a thought-experiment explained in this 2014 interview with Nick Bostrom: https://www.huffpost.com/entry/artificial-intelligence-oxford_n_5689858 https://www.huffpost.com/entry/artificial-intelligence-oxfor... > Suppose we have an AI whose only goal is to make as many paper clips as possible. The AI will realize quickly that it would be much better if there were no humans because humans might decide to switch it off. Because if humans do so, there would be fewer paper clips. Also, human bodies contain a lot of atoms that could be made into paper clips. The future that the AI would be trying to gear towards would be one in which there were a lot of paper clips but no humans.. EDIT: While the article is from 2014, Nick Bostrom's thought-experiment dates back to his 2003 thesis: https://nickbostrom.com/ethics/ai https://nickbostrom.com/ethics/ai (props to @o11c for the correction) ----- Of course, back in 2014 was before LLMs and visual-image-generators were a thing (StyleGan's paper was 2018), but Roko's Basilisk was described in 2010, which would colour people's thoughts of "AI" back then somewhat differently to today: 2014: "AI" means perfect and unbiased reasoning ability, total objectivity (given one's axioms); it will have the ability to outthink its human operator/sysadmin and somehow "escape" onto the Internet, and make a living for itself trading its services for Bitcoin before going-on to do literally anything it wants, like hack Russian nukes to bomb the US, so a paperclip-making AI really could kill us all. 2024: "AI" means using statistical tricks to generate text which contains frequent factual errors, unsound reasoning, and reflects our cultural-biases back at us. A paperclip-making AI will be the next Juicero before running our of VC funding.

system7rocks 2y ago

Sometimes, this is the gift of having a trained chaplain, pastor, or advocate with you who has navigated these moments before. I’ve been in these moments with people in my church, and I don’t think it is always about the doctors or healthcare providers withholding info. Sometimes, you are the tenth person they have seen in a short period of time, so they are trying to communicate as best as they can, as efficiently as they can. Having someone - doesn’t have to be religious to be clear - who has been in those rooms can be helpful. They can repeat what the doctor says, because it can be so frightening and hard to hear. I have asked doctors and anesthesiologists to come back into the room and finish answering the questions. I know they are busy. But I know they want to put you at ease and give you all the info you need. - What side effects can we expect from the medication? - What alternatives are possible? What if the treatment doesn’t work? - What is the prognosis - worst case and best case? - How long will recovery be? - When can family members/loved ones see them? - Who will contact the family members during the procedure? - How soon will the patient be up and about? - Do you know the patients limits and directives - like no resuscitation? More than once, I have helped the doctors hear something that they had missed, buried in all of those charts. More than once, I helped a friend or loved one gain some clarity on why the course of action is best or whether they want to explore something else. Powerful story! And helpful language to think about them as a Bridge to Nowhere.

IG_Semmelweiss 2y ago
well put. In general , you want someone with experience who is also able to think clearly about the issue. But even having someone in there with you can make a huge difference. I personally know of someone who almost died in a hospital from a medical error , and survived only because a family member decided to check on him at the hospital
- pfortuny 2y ago
  My mom almost died from a hemorrage after my birth… Mu granma was there and noticed the sheets getiting red… This was of course many years ago, no monitors etc.
sqeaky 2y ago

brcmthrowaway 2y ago

How to avoid tumours growing in brain?

Mistletoe 2y ago
>Most brain tumors form in people without any known risk factors. But some factors may increase your risk for brain tumors, such as: >Radiation exposure. People who have had radiation to the head are at higher risk for brain tumors. Most often this exposure comes from radiation therapy used to treat another type of cancer, like leukemia during childhood. >Certain inherited syndromes. People who are born with certain syndromes, such as neurofibromatosis, von Hippel-Lindau disease, Li-Fraumeni syndrome, and tuberous sclerosis, have an increased risk of brain tumors. >Family history of brain tumors. Most people with brain tumors don’t have a family history of the disease. But in rare cases, tumors can run in families. >Weak immune system. People who have a weak immune system have a higher risk of developing central nervous system lymphoma. This includes people who have AIDS or who have had an organ transplant. https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=34&contentid=17820-1 https://www.urmc.rochester.edu/encyclopedia/content.aspx?con... This one is really promising: >A study found that people who walked or ran at least 1.8 MET·h·d had a 42.5% lower risk of fatal brain cancer. https://pubmed.ncbi.nlm.nih.gov/24091993/ https://pubmed.ncbi.nlm.nih.gov/24091993/
- brcmthrowaway 2y ago
  What about smoking cigarettes?
  - Freak_NL 2y ago
    Probably irrelevant to consider, given that smoking will significantly raise the risk of a host of other deceases already.
  - daedrdev 2y ago
    Cigarettes directly damage lung tissue, thats why the cause so much lung cancer, so probably its just when the lung cancer spreads everywhere

stavros 2y ago

Was it glioblastoma in the end? The author never said.

DannyBee 2y ago
Yes. (I read all the articles on the blog, and it does in fact turn out to be glioblastoma)
emmelaich 2y ago
Yes, with round two occurring April this year. https://depth-first.com/articles/2024/04/22/round-two/ https://depth-first.com/articles/2024/04/22/round-two/

scotty79 2y ago

That's a bit harsh on the doctors. If you or your loved one have a solid mass in the brain an evening of googling can tell you that it's most likely the end of the road rather sooner than later. There's very little anyone can do to help you feel better or retain illusion of agency over your life When you are finding this out it's usually because you already have significant symptoms that progress because growing mass puts a pressure on the brain. So Option 3 is increasingly suffer what you are already suffering till death, prompt one in case of fast growing tumor, more distant in case of the slow one. If you want to do anything else the best course of action is to remove what shouldn't be there. You could in theory remove just a small bit just to find out what it is, but it won't help with the symptoms you already have and risks of biopsy are very similar to risks of surgery which will also potentially give you more information. Also the information that biopsy could provide would be most relevant in the worst case so that the surgery is done with large margins which might result with few months longer survival but way worse quality of life. So a surgery is basically a no brainer in your already terrible situation. If you are super lucky it might turn out that you had in your brain something relatively benign which, after recovery can give you at least years of normal life. Context: My partner has a large grade 3 glioma and first surgery, radiation and chemotherapy gave her 5 years of completely normal life and the second one after recurrence another year. Our approach to all of this was that no one really knows how long they specifically are going to live. And that doesn't change with diagnosis. Statistics is just that. Statistics. Calling such life bridge to nowhere is just a bleak perspective. Same could be said about every life with similar accuracy.

pfdietz 2y ago
> So a surgery is basically a no brainer I see what you did there.
lucianbr 2y ago
Your conclusion does not seem to follow from the premises. > There's very little anyone can do Hence the validity of the "do nothing" option. > If you want to do anything else But you may want to do nothing. There are valid reasons for it. > So a surgery is basically a no brainer Non sequitur. Your context suggests that you think doing something is a good idea because you know of a case where it worked out. This is availability bias. > Statistics is just that. Statistics. What is this even supposed to mean? Statistics is a useful tool. You're denying it with no argument. "I don't like statistics."

Twixes 2y ago

What a harrowing account. Ended up reading all posts in the author's glioblastoma series, starting with the first one from May 2023. Devastating topic, excellent writing. I can only wish strength

emmelaich 2y ago
Agree, great writing. I particularly liked 'George' -- https://depth-first.com/articles/2023/08/19/george/ https://depth-first.com/articles/2023/08/19/george/

singleshot_ 2y ago

More or less, if you enter a hospital, you need a medical case manager. The case manager should be an equal or superior specialty to the treating physician. The case manager should have a medical power of attorney to make decisions concerning your care (not so much to make decisions, but to be allowed into the decision making process to advise you, and then to regulate the execution of the treating physician). In short if your doctor is not employed by you, you should be taking precautions accordingly. This is an absolutely daft situation, but it is where we find ourselves.

notafanofrcm 2y ago
The last case manager I dealt with (Raymond Rupert) ended up getting banned from practicing medicine.[1] To this day, he still operates and is expanding his case management consultancy service. He even claims Google Canada as a client.[2] His MO is selling people on his "exclusive network" of service providers and getting people not to trust normal doctors. He then comes up with a bunch of fake services to bill people for. He also really likes to prey on kids, because parents don't want to see their children suffer and will pay money if the kid says he's helping. Especially those that are wealthy or have trust funds. The last straw was overprescribing benzodiazepines (incredibly addictive) to people with addiction issues. He has good SEO, is incredibly litigious (why I'm posting this from a burner), and makes you feel good about your decisions. Most case managers do that. The service they sell is not better healthcare, but making you feel like you're getting good healthcare. Case managers sell you the idea that medicine is a giant conspiracy to bilk you out of your money. Then you accept paying the case manager a bunch of money, because at least *he's on your side*. Generally, the doctors I see practice medicine because they want to help people, not out of a desire to make a ton of money. Sometimes their sales and social skills aren't very good because of that. OP wouldn't have had a better health outcome from a case manager in his blog post; just someone charging thousands of dollars for needless consults. [1] https://doctors.cpso.on.ca/DoctorDetails/R-Rupert/0020809-25597 https://doctors.cpso.on.ca/DoctorDetails/R-Rupert/0020809-25... [2] https://www.cieps.com/Faculty%20bios/bio%20-%20rupert.htm https://www.cieps.com/Faculty%20bios/bio%20-%20rupert.htm
- deleted 2y ago

kak3a 2y ago

At glance, thought it is https://en.wikipedia.org/wiki/Bridge_to_Nowhere_(San_Gabriel_Mountains) https://en.wikipedia.org/wiki/Bridge_to_Nowhere_(San_Gabriel...

emmelaich 2y ago
or https://en.wikipedia.org/wiki/Gravina_Island_Bridge https://en.wikipedia.org/wiki/Gravina_Island_Bridge

aabajian 2y ago

Neurosurgeons are extremely smart, hardworking, and (usually) amicable physicians. They are also in short supply and can determine whether an entire health system makes or loses money. Neurosurgery is the hardest residency, and the hardest physician career. However, this difficulty is in-part due to the bravado of the neurosurgeons themselves. During neurosurgery residency, you have to learn to be a brain and spine surgeon, undertake two years of research, learn how to do endovascular interventions, and (of course) manage all of the pre-/post- operative care including clinic. It is not uncommon for a single PGY-2 neurosurgery resident to follow 100+ inpatients. Suffice to say neurosurgeons are overburdened, yet they themselves have fought against reducing training hours. Patients can generally expect to spend less than 30 minutes speaking to their surgeon before/after their surgery. For those unaware, you can become a spine surgeon via either the neurosurgery or orthopedic surgery routes. Just my simple opinion, but I think spine surgery should be its own residency. Brains should be left to the neurosurgeons and extremities to the orthopedists.

m463 2y ago

I've known two people with glioblastoma (both deceased now). It is incredibly hard to come up-to-speed on a newly diagnosed (or newly undiagnosed) medical situation. But I think many many people will encounter it and be unprepared. They may encounter it early when a friend or family member faces the situation. Unfortunately a lot of learning happens after the fact. For example, just finding out if someone has glioblastoma can leave you physically or mentally debilitated. One of the people I knew had a biopsy, but that caused them to be bedridden without control of one side of their body. So in relation to preparation, I think people should prepare. Reading articles like this one (or his other articles) can be uncomfortable, but well spent.

didgetmaster 2y ago

The post is dated in May of this year which is now 5 months ago with no further posts. Anyone know if the author is still with us?

madaxe_again 2y ago
He is not, no.
- zeroXeng 2y ago
  did he choose the eol option that he spoke about in an earlier essay ?

niceguy4 2y ago

The title reminds me of the bridge outside of LA that is a 1 or 2 hour hike to a bridge to nowhere that you can bungee off of. Pretty cool!

ForOldHack 2y ago
https://hikingguy.com/hiking-trails/los-angeles-hikes/bridge-to-nowhere-hike/ https://hikingguy.com/hiking-trails/los-angeles-hikes/bridge...

casenmgreen 2y ago

I've not read the article, but I understand from the comments this is about glioblastoma. I understand that these cancers requires carbs to grow, and going into ketosis - which is to say, fully depleting the body of carbs and having none in your diet - is a highly effective coping mechanism. The cancer basically stops growing. Of course, you then have to live on protein and fat, but better that, than death.

freehorse 2y ago

Anecdotally, when negative scenarios are probable, a strategy of the medical system is hiding them from the patient (until more progress is done, at least). I wonder if that is still a common occurence in the first place, and if it is, I wonder if it is really backed up by scientific evidence of this improving prognosis and outcome of surgeries (though in cases like OP's this seems sort of irrelevant anyway, same with types of terminal cancer), or it is just part of the convenience of the medical system, or part of the medical professionals overworking and not having time to explain and have a more involved discussion with patients (or maybe also not having people with the proper psychological training assigned to actually do that and guiding patients to face the death prospect).

4star3star 2y ago
I have the same questions. If it's known that disclosing certain information will stastically lead to worse outcomes due to patient reaction, what do you prioritize - better possible outcome or patient autonomy over their own life decisions?
rootusrootus 2y ago
Probably situational. Maybe in-person it is more likely to be held until diagnosis is firm? Anecdotally, the raw results that get published to sites like MyChart are pretty to-the-point if you have any idea what you're looking for, and sometimes even for laypeople. My mom had a chest x-ray and the radiologist report came back with a great big, red, bolded "THIS IS A RED DOT CASE" stamped on it. The doctor called within a matter of minutes of that result being published. I had just barely finished googling the likely meaning of that phrase when the doc confirmed it.

zombot 2y ago

I'm not normally one to read "my road through pain and suffering" articles, and to be fair, this isn't one. And I sure am glad I read this, just in case it should ever be my turn.

zeroXeng 2y ago
my takeaway from such essays is to gain perspective and hopefully keep that perspective in the rest of the moments we have.

gregfjohnson 2y ago

I work at a medical device company that specializes in radiation treatment for brain tumors. This thoughtful and profound essay brings home the lived reality of the patients who are treated by our systems. The writer speaks lived truth that has a tone of heft and substantiality. Human life is a fragile and temporary gift. Most of us are lucky enough to have a few moments of transporting and profound beauty and joy. While life's journey has an inevitable end for all of us, we can help each other in innumerable ways to make the journey more bearable, and at times joyful. I'm an old guy, and have an artificial hip and cataract implants. I'm deeply grateful for the quality of life I've been gifted to receive by the medical people who make these kinds of things possible. I hope that the brain treatment system I work on will be a similar gift to the lives of at least some of the patients who require that kind of treatment.

simonebrunozzi 2y ago
What a beautiful, beautiful comment. Thanks for working on a brain treatment system. Who knows, one day I might benefit from it.
zeroXeng 2y ago
>Human life is a fragile and temporary gift. Most of us are lucky enough to have a few moments of transporting and profound beauty and joy. >While life's journey has an inevitable end for all of us, we can help each other in innumerable ways to make the journey more bearable, and at times joyful. very nicely articulated. thank you. the series of essays is moving and profound. what we take for granted is a miracle and we dont realize it, and are caught up in trifles. thanks to whoever brought this our collective attention.

silexia 2y ago

Super important to investigate all medical diagnoses and treatments yourself. I was diagnosed with stage four hip osteoarthritis at age 36 due to some ongoing pain in my hip I had while playing golf. The Harvard educated doctor treated me brusquely when I tried asking more questions. He told me to immediately get a hip replacement. I did a bunch of research and decided to try lifestyle changes first. I quit playing golf and running. I took up cycling and taking anti inflammatory supplements (no drugs). In a couple of months, the pain was mostly gone. Now I have no pain at all and do a large variety of farming manual labor work and am roofing my own house. Doctors see you as a paycheck. Always do your own research into diagnoses and alternative treatments.

deleted 2y ago

[deleted]

gcanyon 2y ago

This is a surgery I absolutely would not have. I would not bet a few healthy months to roll the dice on a few more healthy months against immediate disability for the rest of my short life.