HydroCyborg

Oh gosh...I wish I had better answers for you. Pain management is something I've been struggling with as well as energy. Basically, when I know that I have something planned that will require a lot of energy, I take it easy the day before and I'm usually still bed ridden or close to it the day after. A REALLY busy day can result in me collapsing in bed early in tears. I find Ibuprofen doesn't do much and I keep norco or oxycodone on hand in case it's REALLY bad, but I rarely take it.

As for depression, I haven't dealt with that too much since I was a kid. I realized that I can be upset that this is happening to me and that I'm stuck with it, or I can move on and work with what I have. I will never get to be a test pilot (my dream job) but I can build the airplanes (degree in engineering). I might miss some functions because of surgery and it might take me longer to do what comes naturally to others, but I know that I'm trying my best and working my ass off. I can do everything they can do even if I have to work for it. My hydrocephalus dictate my life, it's just an annoying passenger along for the ride.

I definitely sympathize. I'm sorry you've had so many revisions. I'm thinking of making a punch card for my neurosurgeon to see if I can get my 20th free. He's not too keen on the idea.

Edit: I want to clarify that my pain is not from hydrocephalus, it's from my underlying condition that caused hydrocephalus. It's called Dandy-Walker Syndrome.

The cause of hydrocephalus is different for everyone.

What advice would you give to a new parent of a child with Hydrocephalus?

Remember that the warning signs of shunt malfunction are not universal. That you know your child best, second only to how well your child knows themself. He/she is also a normal child, so headaches, vomiting when sick, etc. are normal and not always a sign of shunt malfunction. I have a checklist of things I go through before I head to the ER for a malfunction:

• Eat something. Something high in iron and protein. Usually red meat will do the trick.
• Caffeine. I must admit, I'm addicted.
• Hydrate. I don't drink water, but I'm usually good about staying hydrated with juice and stuff, but it's something I need to stay aware of.
• Nap. Generally I never wake up with a headache. The only times I do is when I'm having a malfunction, if my pillows are too hard, or if my pillows slip out from under my head during the night.
• I wait and keep track of my headache patterns. While the headaches are serious and life threatening, a lot of things can cause prolonged headaches (the flu, menstruation, etc) so I need to be careful to not jump the gun.

More specifically, would you suggest we talk about it with them a lot while growing up? Or treat it as no big deal?

Why not both? Definitely make sure they are informed and aware, but they aren't different. It make take a little longer or they may need to work a little harder at something, but they can do anything that "normal" kids can. They will be teased for not being able to do things as well as others, but the important part is that they never feel that they can't do something. They just can't do it yet.

I am not sure where you are located, but if you're in the US, the Hydrocephalus Association has meetups and walk a thons to gather support.

Hi fellow engineer! I appreciate it, but this thing is jammed. The neurosurgeon even tried hitting me in the head (yes, that happened) to jostle it loose. lol.

It's very likely that the locking mechanism (or in this case, unlocking) isn't working. Maybe there's an obstruction, or maybe the diamagnetic material used inside was over saturated during a scan. idk. But if you're interested, here is a cool video of the valve.

Edit: I'd also like to add that I know the material is diamagnetic because I used a permeability tester on my head at work because I was curous :P

Good! I caught a Zapdos in Pokemon Go and now I'm drinking beer and eating pizza while answering all these questions.

How are you?

When I was young, it affected daily life more. I had to go to occupational therapy to learn how to walk and how to control some of my fine motor skills. It also caused strabismus, so until 3rd grade I wore an eye patch for a few hours a day to strengthen my eye muscles.

As an adult, I still have balance issues, but they are less noticeable. I can't walk a straight line (so I'm not passing any sobriety test) and I can't ride a bike. Most of the time, no one can tell, but I do sometimes bump into people or walls when walking. That being said, I've been doing jujitsu for 17 years help with the balance issues.

When something goes wrong with my shunt, it sometimes happens gradually. My personality will slowly change. I become more irritable, more forgetful, more emotional, and have trouble with math (something I'm very good at). I'll also start getting headaches more and more frequently until it's all the time/every day. If it happens slowly, I'll forget that life didn't involve headaches every day and my brain tells me that's just how life has always been.