Too little CSF leads to the brain crushing itself under gravity. The brain is almost entirely lipids which contributes to its buoyancy in CSF. Take away too much CSF, nothing for it to float in. Too much CSF? The skull is a fixed volume (in adults) so the CSF compresses the brain tissue. In kids, the sutures or junctions between bones of the skull are still flexible. This allows for childbirth and normal rapid brain growth. It’s easy to tell if there too much fluid around the brain in a newborn because their front soft spot (Fontanelle) will bulge or become firm. A bulging fontanelle also occurs with other pathologies like meningitis.

Had a spinal leak after a spinal tap. So too little fluid. It’s a very unique pain.

Severe pain at top of head unless laying flat.

I spent an entire week laying flat on a couch with a happy cat sitting on my chest.

Initial treatment was an IV of caffeine. Then they they had to patch the hole.

I'm going through this right now. 3 trips to the ER to get a diagnosis, since it just happened spontaneously. Two months so far laying flat 20+ hours a day. I haven't been able to see a neurologist yet about it (I have an appointment scheduled soon now). For me, the headache is usually nearer the bottom of my head, but it tends to move around with different posture.

This random stranger hopes you get to see the neurologist and hopefully get it resolved soon!

>Initial treatment was an IV of caffeine.

For you, or for the cat?

HA!...thank you for that! :)

Had the same also after a tap, went away after 5 months without a patch. Only things that helped was laying flat and coffein (less so than laying flat). A hard part of it was thinking it might never go away. Doctors told me to wait 6 months before trying a patch and they said it only works sometimes.

Ouch. Mine offered the next day. I waited a week before going back and getting one.

I've heard not having enough CSF is supposed to be one of the most painful headaches there are. How bad was it?

Fine if I was flat. A step below severe kidney stone otherwise. So not quite suicidal, but close.

It was only tolerable Because I could lay flat and the pain would quickly resolve. If I laid flat for three or four hours I could stand up for about five minutes before the symptoms hit again.

Not sure how strong the leak was. I suppose it could have been worse.

Interesting. Fascinating how you can go a lifetime without noticing CSF but one thing goes wrong and suddenly you can't even stand up. Good to hear you got better

If there is too little CSF (e.g. a CSF leak), the brain 'slumps' but it doesn't "crush itself under gravity".

Too much CSF can lead to hydrocephalus, which is enlargement of the ventricles. I wouldn't describe it as CSF "compressing" the brain tissue.

I think it drains into the peritoneum but I'm not completely sure. There's a resistance on the shunt to maintain pressure. Too high will cause hydrocephalus with all sorts of complications. Too low will cause a massive headache short term, long term I'm not sure. I'm an anesthesiologist and frequently work with neurosurgeons.

They tunnel it in the subq until the abdomen then they make a tiny incision in the peritoneum and depending on the neurosurgeon may have general surgery take a look laparoscopically to make sure there’s CSF flow then use the grasper to try to toss it in the right pericolic gutter over the liver.

How do they avoid bacteria from going up a shunt to the brain?

I thought that was an interesting question as a layman. I found this, which I thought was an interesting read. [0]

[0]: https://www.sciencedirect.com/topics/medicine-and-dentistry/...

Yeah sterile technique has to be meticulous in shunt cases. There’s evidence that the number of people scrubbed into the case influences the shunt infection rate so students like me occasionally would not be permitted to scrub.

There’s generally no bacteria outside of the food tube though it certainly could happen the way you describe if there happened to be.

The technical founder of this company is developing wireless monitors for this cerebrospinal fluid pressure:

https://www.rhaeos.com/

We got to hear him speak pre-pandemic, definitely cool tech.

I know someone who could benefit significantly from this. How would he go about acquiring one?

I'm not a doctor and don't at all want to pretend to presume I can understand for sure what would or wouldn't be helpful. And I'm not assuming you need help--but I just thought something I know might be helpful somehow for your daughter and you.

Certain type of yoga breathing exercises (pranayama), as a result of involving contracting muscles in the body while breathing, help to pump CS fluid through its "ventricles", as well as to move lymph around. I have no idea how a shunt works, or would interact with these exercises, but as a result of the shunt intervention I'm worried these exercises may be dangerous to your daughter. At the same time, I consider they may also be helpful, by perhaps helping to regulate pressures, or assist training the body to improve its ability to do so, or encourage circulation of the CSF and lymph. Stuff like this might be something useful to explore for you. Have a good day!

Too little CSF leads to slit ventricle syndrome with a scary clinical image but not life threatening. Direct consequence is bilateral subdural hygromas.

what exactly do you mean by alien head? not offended, just curious

I can’t post the specific child’s picture as it wasn’t posted publicly and I wouldn’t want to disrespect them, but here’s some examples of less severe hydrocephalus you’ll see often in spina bifida parenting groups [0] [1]. Often people don’t comment on ones like that as everyone wants to get along but if it’s left untreated it can eventually progress to be much more severe and cause debilitating headaches and mental retardation. Interestingly, in googling this apparently low pressure cerebrospinal fluid headaches are also a thing [2], so keeping just the right amount of cerebrospinal fluid draining is a must.

[0] https://www.hydroassoc.org/people-view/wylie-6-months/

[1] https://www.travelblog.org/Photos/253290

[2] https://www.hopkinsmedicine.org/health/conditions-and-diseas...

You can google "hydrocephalus", though I should warn the images can be a bit disturbing

At least in the US, early intervention allows doctors to recommend shunts so extreme cases of hydrocephalus can be avoided and head sizes normalize a bit as kids grow. The photos are usually from med textbooks and for teaching future doctors and usually demonstrating the extreme forms.

Let’s not say alien head. My biggest worry as a young dad was my child being called names because of his head circumference. He too was born with HC.

> Let’s not say alien head.

To be clear, I never said that and agree the term shouldn't be used at all.

I believe they mean enlarging of the fontanelle as is typical in those with hydrocephalus.

a physically large head, shaped similarly to a stereotypical alien head