Bridge to Nowhere

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.

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.

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.

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.

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.

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?

> 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.

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.

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

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).

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.

Incredibly poignant writing with such clarity.

I feel truly sorry for the author.

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.

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.

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

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

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.

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!

How to avoid tumours growing in brain?

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.

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.