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What Happened to Lee

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Re: What Happened to Lee

#131

Post by s5300 »

rubicon33 wrote: post #111
s5300 wrote: post #52

If this story moves you, and you have the means, consider donating to CSF Leak research at Stanford. Cerebrospinal Fluid Leaks are something that can completely mimic a large amount of FTD symptoms, and even in the care of utmost professionals, can be near undetectable - and somehow, treatment can be as beautifully simple as a one and done injection... to a hellish guessing game and years of attempts. As Dr. Ian Carr…

How DOES one get diagnosed for this? Is there a test?

If you have zero external support system and literally no money/income... it's an absolute shitshow, and that's about all I can tell you.

Dr. Ian Carroll is arguably the best resource in the world. Starting here is probably a good choice.

https://profiles.stanford.edu/ian-carroll

https://www.mdedge.com/neurology/migraineresourcecenter/arti...

https://youtu.be/QyvWxobqKrc

https://youtu.be/g5lsFIDzazc

No idea why I currently can't find a non walled version of the first link. It's important - and general googling would be "when to suspect a CSF Leak Ian Carroll"

Secondary to Dr. Carroll

Dr. Wouter Schievink at Cedars-Sinai also has good information... He's actually the pioneer of research IIRC.

Saved a dude from a diagnosis of dementia and spending the rest of his deluded days in a nursing home.

https://www.nytimes.com/2017/11/02/magazine/why-was-their-br...

IIRC - in the end, based on decades of patient history, he just opened this guy up as a last resort and nearly missed - but did find the leak. Near full recovery.

It seems to be that there are some very high risk groups, like those with connective tissue disorders - specifically, Ehlers Danlos. Also, from Carroll's findings, a lot of people diagnosed with POTS are often misdiagnosed and truly have some small CSF Leak. Ehlers Danlos and POTS often go hand in hand as well...

Re: What Happened to Lee

#132

Post by jgrahamc »

I posted this hours ago and then stepped away. The story captures so much about the Lee I knew so well. I'll add one piece of praise for Lee's early architecture of Cloudflare.

Everything was controlled by a single Postgres database that made very heavy use of stored procedures, that called other procedures, that called others. It was one giant program inside the database. It took me a while to comprehend what he'd done but it was really great. The database ran everything and all those functions made sure that audit logs were kept, that the calls were allowed for the user ID being passed in, and some of these procedures made external calls to APIs including getting things like SSL certificates.

It was a magnificent monolith inside a database.

I worked on the periphery of the database (it was truly Lee's domain) and he'd tell me what output to expect or API to create and I'd code to his spec. and we'd just hook it up.

If any single artefact represents what he did at Cloudflare, it's that database. And he used to code it on a laptop we called "The Beast" because it was so crazily heavy and overloaded with memory etc. that he'd carry around a mini, test Cloudflare wherever he went.

Re: What Happened to Lee

#134

Post by atmanthedog »

rubicon33 wrote: post #111
s5300 wrote: post #52

If this story moves you, and you have the means, consider donating to CSF Leak research at Stanford. Cerebrospinal Fluid Leaks are something that can completely mimic a large amount of FTD symptoms, and even in the care of utmost professionals, can be near undetectable - and somehow, treatment can be as beautifully simple as a one and done injection... to a hellish guessing game and years of attempts. As Dr. Ian Carr…

How DOES one get diagnosed for this? Is there a test?

I had a CSF leak repaired by Dr. Schievink at Cedars-Sinai. My diagnosis happened after I had an acute attack of intracranial hypotension shortly following a long and bumpy session of riding mowing. This attack involved a 'worst headache of my life' that was somewhat relieved by being horizontal. Getting to the hospital seemed too painful, so I stuck it out at home and the headache went away. A couple days later I developed a left sixth cranial nerve palsy, which persisted for around two weeks before I finally went to the ER. After a few days in the hospital and tons and tons of tests for infections, MRIs, lumbar punctures, etc, they decided that I had idiopathic hypertrophic pachymeningitis. That was the working diagnosis for about a week, when my neurologist called me back and told me that they thought they had found CSF leaked into the spinal canal, and so they believed I had a CSF leak.

So, the short answer is that diagnosis will be difficult, and there isn't really a test, but MRI with gadolinium contrast will show enhancement of the dura, and hopefully someone looking at it can see a leak if it is obvious. There are also cases of leaks being caused by a venous fistula, which does not image well.

For what it's worth, I had back-of-head-and-neck headaches intermittently for a while before this, most notably when riding rollercoasters (which I do miss). That is the only long term subtle 'sign' I can remember.

Hope this helps.

Edit: I should also probably add that my case is somewhat weird, caused by a bone malformation in my thoracic spine and difficult to localize with imaging. I had a T1 laminectomy to correct this. However, I'm not sure there are really 'standard' cases, except those that are iatrogenic due to LP or epidural in delivery.

Re: What Happened to Lee

#135

Post by dimxasnewfrozen »

rubicon33 wrote: post #107

Terrifying. As a software engineer, shit like this scares me. I've felt like I'm on a steady, slow, decline for the last ~4 years. Is it just burnout? Do I need a new hobby? I used to love programming... Spent 12 hours a day jamming on it. Now, I struggle to keep my mind on a line of code for more than 5 minutes. At what point is it just burnout, or at what point is it something more? That's what's terrifying to me.…

After reading this I had to do a quick self-assessment.

For the last few years or so (I'm 33, also a software engineer) I've noticed a pretty big decline in my mental state. I can't focus. I immediately forget what I just looked at, read or did. I completely zone out when people talk to me. I am just not present in any situation. What is strange is that I can actually notice it, not in real-time however. It's been worrying me for the last few months so much so that I started meditating which I've never done before. My wife mentioned seeing a therapist because she thought maybe I was depressed so I scheduled an appointment but it's been rescheduled due to the virus.

I keep hearing about other programmers experiencing similar issues (yourself included) and I wonder if the nature of what we do somehow damages our brain in some capacity and we just don't know it yet. Obviously Lee's case is different but it's certainly scary. I hope he doesn't suffer as well.

Re: What Happened to Lee

#136

Post by tilolebo »

GCSAQCMIYI wrote: post #128
billti wrote: post #25

> The neurologists delivered their verdict: He appeared to have a textbook case of frontotemporal dementia—known by the shorthand FTD Oh man, was that a kick in the guts when I got to that bit. My Dad was diagnosed with that in the past year, (after obviously struggling for a while), and declined rapidly. He had a different variant, and indeed the one thing that DIDN'T change was his personality. In fact, that's what…

>For one thing, being in the U.S. healthcare system, if I did have the markers, would that then count as a "pre-existing condition" I'd have to disclose? I'm sure the people who pay premiums for health insurance would hope so. If you already know you have a condition that's going to cost a lot of money to treat, you're not looking for insurance. If you can't pay for it yourself, you're looking for charity.

He's looking for health care, actually.

Re: What Happened to Lee

#137

Post by garganzol »

s5300 wrote: post #131
rubicon33 wrote: post #111

Earlier quoted context omitted.

How DOES one get diagnosed for this? Is there a test?

If you have zero external support system and literally no money/income... it's an absolute shitshow, and that's about all I can tell you. Dr. Ian Carroll is arguably the best resource in the world. Starting here is probably a good choice. https://profiles.stanford.edu/ian-carroll https://www.mdedge.com/neurology/migraineresourcecenter/arti... https://youtu.be/QyvWxobqKrc https://youtu.be/g5lsFIDzazc No idea why I cur…

Great references. Anonymous browser page works well when trying to get a non-walled access to "when to suspect a CSF Leak Ian Carroll":

https://www.mdedge.com/neurology/migraineresourcecenter/arti...

Re: What Happened to Lee

#138

Post by GCSAQCMIYI »

tilolebo wrote: post #136
GCSAQCMIYI wrote: post #128

Earlier quoted context omitted.

>For one thing, being in the U.S. healthcare system, if I did have the markers, would that then count as a "pre-existing condition" I'd have to disclose? I'm sure the people who pay premiums for health insurance would hope so. If you already know you have a condition that's going to cost a lot of money to treat, you're not looking for insurance. If you can't pay for it yourself, you're looking for charity.

He's looking for health care, actually.

Yes, and he's looking for it to be financed by other people while giving them nothing in return for it.

Re: What Happened to Lee

#139

Post by lpah4all »

Koshkin wrote: post #97
lpah4all wrote: post #69

Earlier quoted context omitted.

Every person is a door to your happiness, and you have the choice to serve their happiness or to treat them callously or even cruelly. There is no religion without the person actively trying to be a better person to every single person around them. It doesn't matter what spiritual practices they do or don't do, we are each measured by our hearts with respect to how we treat every person we encounter. Religion's only…

The True Scotsman, I know...

Well, correct me if I'm wrong, but words have meaning and, as a father-to-son Scotsman, I'm pretty fucking sure that a Scotsman has to have some branch of their ancestry come from Scotland.

Also, a priest can't honestly say they love you and serve Jesus if they're raping your children in the back room.

There is truth and there are lies and falsehoods. Nuance is required to discern between them. Most people are just too intellectually lazy to even try. That ignorance leads to many of the systemic problems of our world, not the least of which are religious groups like ISIS/ISIL and the Catholic Church deceiving people with their lies, hypocrisies and oppressions.

Dunning & Kruger, dude. I know where you land on the chart, and I know that you don't know where you land yet think you do.

Re: What Happened to Lee

#140

Post by mynameishere »

jgrahamc wrote: post #132

I posted this hours ago and then stepped away. The story captures so much about the Lee I knew so well. I'll add one piece of praise for Lee's early architecture of Cloudflare. Everything was controlled by a single Postgres database that made very heavy use of stored procedures, that called other procedures, that called others. It was one giant program inside the database. It took me a while to comprehend what he'd d…

Working with stored procedures is just the pits. I wonder why you would describe that as "great". Maybe it's optimized, but so would be a giant executable written in assembly.
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