My short bio:

I was born with a condition called Hydrocephalus (commonly known as "water on the brain") where spinal fluid builds up in the ventricles of the brain. I have a ventriculoperitoneal (VP) programmable shunt to re-route the excess fluid to organ tissue in my abdomen to be reabsorbed naturally. The "programmable" part is a valve in my head (outside of my skull, but under the skin) that can change the flow rate of my spinal fluid using magnets and without invasive surgery. However, my valve is stuck so the next time something goes wrong, I will need surgery again.

I have had this since birth and, due to complications, I have had 19 brain surgeries to date. There will likely be more in the future, but so far I have been surgery free for 5 years.

I wanted to do this AMA to raise awareness for Hydrocephalus. Hydrocephalus is a common birth defect, but hardly is talked about and does not get the funding for research that it truly needs. 1 in 500 to 1 in 1000 births result in Hydrocephalus; that's as common as down syndrome. Despite being a condition that has been acknowledged since 2500 BC, there was no treatment until 1952 AD. People often died of untreated hydrocephalus. Very few advancements have been made since the 1950s.

If you want to find out more, either ask me here or check out the Hydrocephalus Association; it is a great resource.

My proof: Proof was submitted privately, but here's a picture I will share of my shunt being adjusted!

Edit: Wow! I stepped a way for an hour and came back to a flood of wonderful questions! I just grabbed a beer and some pizza and will try to answer each and every one of these. Keep them coming!

Edit 2: This blew up so much! Thank you all for your questions. I'm going to try to keep answering them all but I definitely need a break.

In the meantime, here are some great resources to find out more about Hydrocephalus:

The Hydrocephalus Association Wikipedia page for Hydrocephalus VP Shunt Diagram

And to answer a couple repeated questions, no, this is not what the valve looks like and I'm not a spokesperson for Valve. It looks like this and it sits just outside of my skull and under the skin.

Edit 3: Wow! This blew up bigger than I could have imagined! Thank you so much, everyone. I have a party to go to, so I'm out for the night. I'll try to answer people's questions and PMs and such over the next few days, but there's a lot of them. Sorry if I don't get to yours.

Edit 4: I just want to remind everyone that I'm not a medical professional; just a professional patient. Please keep in mind that my answers are about my experiences and should not be taken over the advice of your neurosurgeon.

To those of you asking about drinking water: When your brain is in distress, your body begins to dump sodium to protect it. If your sodium levels get too low, it's life threatening. To combat that, often doctors will prescribe salt pills and limit water intake. However, if your shunt is working fine, your brain isn't in distress and it's a moot point. Do not alter your water intake because of something you saw here, follow your neurosurgeon's advice. For me, I just hate the taste.

Thank you, everyone, for your responses.

Comments: 1647 • Responses: 47  • Date: 

Tigerdiosa2350 karma

I'm so happy to read this post! I am a 30 year old female with hydrocephalus and a VP shunt and have had my 27th revision (brain surgery). I have way too many questions. How do you keep your energy up? What do you do to manage depression (and has that been a problem)? What do you do for pain management?

HydroCyborg2011 karma

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.

coyote_den71 karma

There should be a lemon law for those kind of things. Back in the shop too many times? You get it replaced for free.

HydroCyborg127 karma

Yes! I actually made a punch card for my neurosurgeon. I'm hoping I get the 20th surgery free.

veRGe14219 karma

Taking 4-6 grams of red vein kratom (via tea or supplement) could help with the pain management for the moments that such is bothering you, but not to the extent of needing to take a strong painkiller. It's less effective than norco/oxy, but can still offer pain relief more than tylenol/ibuprofen. Pain management is a tough balancing act - wish you the best.

HydroCyborg3 karma

Thank you. I am willing to try it, but often times norco/oxy doesn't even work :/

behr55760 karma

What advice would you give to a new parent of a child with Hydrocephalus? More specifically, would you suggest we talk about it with them a lot while growing up? Or treat it as no big deal? I want to be mindful that some things may be harder for them, and give them credit, but at the same time don't want them to use it as a crutch.

Thank you for spreading awareness! It blows my mind that 1 in 1,000 children are born with this (even more adults diagnosed later in life) and yet no one around me in my family or social circle had ever heard of this condition.

HydroCyborg613 karma

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.

straighttoplaid213 karma

I'm hooking on to this comment because the automoderator requires all top level comments to be questions...

My family has a bit of history with both the condition and the treatment. One of my uncles was born with hydrocephalus. 60+ years ago though it was considered a permanent condition and he would never have any mental development to speak of. He was literally a lump that ate and pooped with no hope of getting past that point.

The doctors told my grandfather that he had to think of his family and get my uncle into an institution. Since they were not wealthy they couldn't afford a private institution and had to wait until the state had a spot. During this time they asked if they'd be willing to take part in a medical experiment. I won't call it a medical trial because they didn't really consider it treatment, it was more to just see what happened (this was a very different time when it came to medical ethics...). The medical procedure was installing what they called a "shunt" to drain the fluid from his brain.

After a while my grandmother noticed something... He started tracking objects with his eyes. He started reacting to what was going on around him. The doctors originally said they were just confused or having wishful thinking but eventually they had to admit that they were right.

When the state called to say they had room for my uncle at an institution my grandfather told them it was no longer needed... My uncle was developing mentally.

I wish it had a completely happy ending but after a while he developed an infection because of how the shunt drained (they no longer use this method). The infection killed him. While it's sad, I'm glad to hear about people like the OP. It makes me think that what my uncle and grandparents went through meant something.

OP, I don't have a question but I'm so glad to hear that the treatment (though still difficult) is helping.

HydroCyborg75 karma

That's a really touching story. Thank you for sharing! I'm sorry about your uncle.

a_jill_sandwich79 karma

I'm also hooking on as I don't have a question - just wanted to say thank you for raising awareness, you're awesome! So many people I know don't even know about Hydrocephalus.

I also have an uncle who was born (in 1955) with hydrocephalus, and very similarly to /u/straighttoplaid had a shunt installed. He lived pretty happily until 1980, when he unfortunately passed away. My grandparents consented to donate his brain to be studied so more could be understood about the condition and how the shunt worked. This happened 3 years before I was born, so sadly I never knew him but everyone says what a sweet guy he was. He liked to make/sew teddy bears.

Best wishes to you, OP, and thanks again for your post!

HydroCyborg61 karma

Thank you for sharing your uncle's story! Did you know that the Hydrocephalus Association sells teddy bears with shunts! Your story reminded me of that.

landon9560516 karma

When I read "valve in my head" I honestly imagined this and had a chuckle for a good minute.

I don't really have a question, so, uh, how are you doing today?

HydroCyborg338 karma

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?

photoengineer421 karma

As a valve design engineer I'd like to know, what went wrong with the valve? With the somewhat slim hope of helping you fix it without surgery.

HydroCyborg475 karma

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

satanicwaffles267 karma

I mean, there's no problem that can't be fixed with a liberal application of brute force and ignorance.

I'm imagining the good doctor sitting in their office, pulling out a prescription pad and writing "Slap 'em upside the head"

HydroCyborg127 karma

OMG, that made me laugh so hard.

photoengineer59 karma

That is kind of awesome you can run self diagnostics on yourself at work. And the image of your neurosurgeon trying the tried and true method of hitting it to make it work is amusing, I'm glad mine never tried that! (spine surgery, something else entirely).

Thanks for the video, interesting valve. I see why they designed it like that, though I would have tried something else because bio fouling is annoying on aircraft and I imagine even more so when an operation is required. (yeah sorry, kind of douchy of me to second guess other peoples designs after the fact) How often does it require pressure adjustment?

2girls1netcup45 karma

No, please, invent a better valve. The valves return no data and give no feedback so, typically, the only way to know a valve is malfunctioning is for the patient to become symptomatic. I say "typically" because you can see more fluid accumulate in the ventricles via MRI or CT and there was a recent paper published where they put an ice cube on the shunt tubing and a thermometer a few inches lower to see if there's any CSF flow along the tubing but I'm not sure anyone is doing that in practice.

I think because it usually isn't a life-or-death situation when there's a shunt malfunction there's little effort put in to making them better.

I believe the statistic is that 50% of shunt placements fail within two years. Adjustments happen when a patient is symptomatic but imaging appears normal and after an MRI to verify that the setting hasn't changed.

photoengineer16 karma

50%?!?!? That's crazy.

HydroCyborg50 karma

u/2girls1netcup is correct. 2 years is the "danger zone". You are pretty safe to assume that your hardware will last awhile if you make it past 2 years. The most likely time frame for failure is within 3 months of surgery, after that the likelyhood of failure begins to taper off slowly.

Fun fact! Roald Dahl co-invented a shunt to treat his son's hydrocephalus.

Guy_In_Florida153 karma

Do you have seizures?

In 1999 my wife suffered from extreme headaches, she went to probably five doctors who of course thought she was someone wanting drugs. She was literally about to take her life, went to the ER and some young intern asked her why her eyes were protruding. She had a fluid sack in the base of her skull the size of a lemon and full hydrocephalus. They did the surgery that night, put in the shunt and she got better over the next four weeks. She said "if I survive this, I'm getting myself into shape again and I'm going to live life for real. Fast forward three years, she's a body builder with a pro card and a nice clientele as a trainer. Then the seizures started. It's been ten years now she has fought an unknown seizure disorder, but all doctors say, "oh of course it has nothing to do with the shunt and hydrocephalus."

Best of luck with you struggle, I wish you and my wife could have lunch.

HydroCyborg36 karma

I do not have seizures. The only time I did have a seizure was after a bad shunt revision. However, several people with hydro do have seizures, but it's usually indicative of whatever caused their hydrocephalus. There's almost always a primary condition that causes it. Your wife should get checked out more, there is always a chance that it could be something wrong with the shunt that they missed, but it might be an underlying condition that was slowed down when the shunt was placed.

Good luck to you both.

ID_tagged107 karma

Have you met other people with your condition? Are there groups or is it just too rare?

HydroCyborg165 karma

It's not rare at all! In fact, I have 4 friends on facebook that have it and I meet people with it all the time.

Chances are that you probably know at least one person with hydrocephalus and don't even know it. 90% people with spina bifida or cerebral palsy have it and 1 in every 500 to 1000 births result in hydrocehalus.

Charliee131385 karma

How much has it affected daily life?

HydroCyborg296 karma

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.

whatsmellslikeshart143 karma

I'm pretty sure 17 years of jujitsu makes you a verified badass

HydroCyborg168 karma

Verified badass that will fall over if I stand on one leg....I just might take you with me :P

FrostyMc25 karma

You need to get on r/bjj. They would love to hear about you. Also, What's your favorite submission chain? And what's your preferred guard?

HydroCyborg55 karma

I don't do Brazillian Jujitsu (I'm not entirely sure what submission chain and guard are), I do a form of Japanese Jujitsu called Dan Zan Ryu.

swimmingpoolofpoop83 karma

Can you have sex, do you have sex, is it enjoyable, do you like burritos, and if so, do you prefer them burrito or chimichanga style?

HydroCyborg141 karma

Yes, yes, very, yes, burrito!

swimmingpoolofpoop48 karma

Fuck yeah. Glad to hear on all 5 accounts. Follow up question(s). Medical marijuana: Any possible uses for you, any interest if possibilities occur?

edit: and thanks for answering! first time i've ever had a question answered in an AMA

HydroCyborg51 karma

Well, marijuana is now legal in my state (starting January 2018), so it's definitely a possibility. However, I find it does nothing for my pain and it usually just puts me right to sleep (both kinds).

I'm glad it works well for some people though and I hope that it becomes federally approved soon.

punbasedname66 karma

Thank you for doing this; my three year old daughter has hydrocephalus due to spina bifida. We did ETV surgery last summer and she seems stable at the moment. What advice would you give myself or my wife as a parent of a child with hydrocephalus? Obviously we're always worried about complications, but is there any day-to-day advice you'd give? Thanks again!

Edit: In my excitement to get this out, I just realized that this question has basically at least been asked. So, I guess I would ask -- what advice would you give to my daughter as she gets closer to elementary-school aged?

HydroCyborg82 karma

That's great that she had a successful ETV! So is she currently unshunted? Or will they remove it later? Or leave it as backup?

Advice for your daughter: You are not your diagnosis. You can do anything, don't let anyone tell you that you can't.

GReggzz73264 karma

My girlfriend of almost 9 years also has hydrocephalus. She was given her shunt when she was a baby, Ben Carson actually was the surgeon who had put it in. She has had 20 brain surgeries in the past 5 years. Have you had any issues with your shunt over draining? That was a big problem with my girlfriend, but had gone undiagnosed for years, leaving many ER doctors scratching their heads trying to find a reason for her incredibly painful migraines. This went on until I did a lot of research, suggested her shunt was malfunctioning and prompting her to have a different neurosurgeon run tests to check the drainage rate.

Have you had any instances where you knew there was something wrong but your doctors couldn't find a problem?

HydroCyborg58 karma

Definitely! All the time.

Have her checked for Slit Ventricle Syndrome. It basically makes a shunt malfunction look like a normally functioning hydrocephalic brain. It's really common to develop SVS if you've had a lot of shunt surgeries.

If she's having issues again and they can't detect it, have a ophthalmologist called in. If there is pressure in her head, but the scans present normal, then her optic nerve will likely be swollen (papilledema). That's how I can get a diagnosis when everyone in the ER says I'm fine and wants to send me home.

Egobot43 karma

Have you considered contacting Valve about being there new postergirl?

HydroCyborg25 karma

Lol! No, I have not.

arrrghy31 karma

how did Obamacare affect your medical treatment or cost? How do you think the new healthcare laws may affect it? Thank you for being willing to be so open about this!

HydroCyborg71 karma

I honestly can't answer that. Since before Obamacare came to be, I've been working for the same company who provides great insurance. I'm extremely lucky that healthcare problems have not affected me, but I'm terrified all the others who do have to deal with it.

I will say that american healthcare is crap and I've had to pay at least $4000 (my deductible) out of pocket every year due to medical expenses.

natejorgy30 karma

What I are things you wish your parents did differently? My 4 year old son has hydrocephalus and a VP programmable shunt.

Do you wish they took it easier on you, pushed you harder? Let you rest more? Anything?

Thanks.

HydroCyborg55 karma

The only thing I wish they did differently is I wish my mom didn't freak out every time I had a headache. Headaches are normal, people get them all the time for any number of reasons. Not every headache is a disastrous one.

Just remember that your son is a normal person with a bit of extras. You know him best. Look for significant behavioral changes (especially if they happen gradually over time); loss of memory, more irritable, really frequent headaches. Shunt malfunctions don't always present as the text books describe and not every symptom that matches a shunt malfunction is one. Don't be afraid if one symptom pops up, get him checked if you see multiple symptoms.

Good luck to you and your son!

AlabamaAl8 karma

If I could I would upvote this 100 times. My mother would freak out if I ever complained of a headache. She always thought it was the shunt.

HydroCyborg7 karma

Like this?

bro-th28 karma

does the regulation of your spinal fluid cause nausea? I had to get chemotherapy in my cerebral spinal fluid, and it always made me horribly nauseated. I have an omaya reservoir in my head, for easy access, and my doctor sticks a needle in my head, draws out CSF, and then injects the chemo (called methotrexate). Talking about it makes me nauseated.

BUT when I had the procedure done via spinal tap, it was never very bad, so i imagined the movement of CSF in my head offset my equilibrium. Cause the first time this happened, I literally pissed, shit, and vomitted at the same time.

HydroCyborg22 karma

First off, I'm sorry to hear about your chemotherapy. I hope it's going well and that you are better soon.

The regulation of my spinal fluid typically does not cause nausea, because it's happening all the time so I'm pretty used to it. However, I do get nauseous when the flow rate is adjusted (and really bad headaches) for about an hour after. And yeah, shunt taps are PAINFUL, it's a very similar procedure to the CSF draw from your reservoir.

ku118527 karma

When did your parents or doctor first notice this defect? Was it discovered during routine examination or only after it started showing symptoms? How do people or their parents typically come to learn that their child has hydrocephalus?

And I hope you can keep number of future surgeries to a minimum. Surgeries suck, especially when they don't result in a permanent fix.

HydroCyborg52 karma

When you're an infant, your skull isn't fused together yet. So when your head over fills with spinal fluid, your skull starts to expand. This can often happen really gradually and it can be unnoticeable at first. So my head got really big, but slowly. My personality started to change (I would cry a LOT more and was barely eating). Then one day my eyes went to sunset (term for downward turning eyes) and they took me to the ER. Looking back at baby pictures, my head was REALLY swollen, but it's hard to tell when things change slowly. The whole process was about 2 months from birth to diagnosis, but I was definitely born with it.

Parents find out in many different ways, either it's detected at birth, they see that their child's head is growing, the child develops sunset eyes, it's discovered through doctors visits, or even detected by an underlying condition. There is almost always some underlying condition. For me, it's Dandy-Walker Syndrome.

Death_Bard22 karma

Have you ever had problems with infection related to your shunt?

HydroCyborg39 karma

Yes! When I was 11, I had just had my first shunt revision since I was a baby. After it was all done, something wasn't quite right and they sent me home anyway. A day later, my head started leaking spinal fluid! I went to the emergency room and had to spend a little over a week in the ICU while my old spinal fluid was drained into a bag next to my bed while my body replaced it with new spinal fluid. It was awful.

When I was 18, after another surgery it was suspected that I had an infection due to a bad shunt tap that was taken. It turned out that it was just contaminated and I didn't have an infection, but I was treated for one anyway and had to take a semester off of college because of the PICC line that was placed.

fantasticforceps17 karma

I used to work as an RN in neuro ICU. Is there anything you wish your treatment staff knew, any common mistakes made, things we can chill out about and what actually helped make your hospital stays not suck quite so much?

HydroCyborg8 karma

I find that Neuro ICU nurses are the best. They are attentive and helpful and usually just glad to see a patient that can talk.

I wish my treatment staff new that I'm not seeking meds, I just know what works and what doesn't for me. I've been through the surgeries enough times to know. Don't give me percocet as my only pain killer and then keep me an extra day because I vomited. I told you percocet makes me vomit and that either oxy or norco will not.

Common mistakes: Not answering the calls when I really need to pee and can't walk on my own. But I know that's an understaffing problem mostly.

As for things that make my hospital stay no suck quite so much, I will leave you with this story:

My hair has always been very long and very thick. For surgery, they shave a large portion on the right side and the surgeons don't care about the hair that remains, which I understand, because they are only concerned about the life saving surgery. But what you end up with after 1 week of lying in a hospital bed is matted hair that is caked with blood and hurts to even try to comb because of the stitches in your head.

When I was 18, I had surgery twice in a 2 week period and was in the hospital for about 3 weeks. After the first 2 weeks I was done with surgery, but they wouldn't release me because they thought I might have an infection. So for a week I was just doing nothing. This really sweet nurse would come by everyday on her breaks and work on detangling my hair. She would use my brush and bring a spray bottle of detangler and work on it for about 30 minutes a day. By the time I was able to shower again I could actually brush my own hair. Now I always braid my hair right away after surgery, but I'll never forget what that nurse did for me.

cincycusefan15 karma

Are there any annoyances, about which we might not think to ask, that you would like us to know about?

HydroCyborg50 karma

Since hydrocephalus is an "invisible" disability, a lot of people forget and just assume that I'm like everyone else. Which typically is fine, but I get fatigued MUCH faster. If I'm walking around all day with my friends, I might not be able to get out of bed the next day because I'm in so much pain. Then I get a lot of "omg, what's wrong"...the answer is life. This happens a lot, I'll be fine in a day, I just need more time to recharge.

Or when people hear that I can't ride a bike, they like to challenge that or try to "teach me". Like I can just get over having balance issues because I haven't tried hard enough. Even as an adult I'm often teased for not being able to. Like since it's not obvious that there is something wrong, it's ok to make fun of.

YouEvenLift_Brah13 karma

My 17yr old brother has Hydrocephalus as well and has a tube running from the back of his head down to abdomen, he doesn't really seem to get bothered by it except for when there is big thunderstorms, the change in air pressure kind of gives him a headache and makes him cranky, do you experience this as well? He also was never allowed to play contact sports such as football or hockey since he has to be careful with his head but we both fell in love with bodybuilding and get to hit the gym and stuff together every day, the tube he has running down his front side is only visible when he leans down to like 11% body fat or lower but it doesn't bother him really at all, when he's bulking up and is eating a ton more it practically invisible, interesting to hear about someone else with this condition!

When he was pulled out of my mom a month early to have brain surgery, they said if it wasn't successful with implementing the shunt that he was going to he deaf, blind, and autistic but thankfully everything went okay and he's practically totally okay now besides checkups at the doctor

HydroCyborg8 karma

That's great to hear about your brother doing well.

I don't get headaches or anything from slight weather pressure changes (at least that I've noticed). I can, however, feel the movement of buildings that are 2 stories or more because it makes me feel really off balance. I use to play ALL the contact sports, because fuck it, I want to live my life! But I was always good at protecting my head and I never played on any teams, just randomly with friends. I started japanese jujitsu when I was 14 to help with the balance and I've been doing that ever since.

unicornthecharles12 karma

What do you do for a living? Does Hydrocephalus effect your work at all? How noticeable is the valve?

HydroCyborg33 karma

I'm a mechanical engineer and I build particle accelerators.

Does Hydrocephalus effect your work at all

Funny you should ask. Typically, no. But the same year I got hired to build electromagnets for particle accelerators, I went in for surgery. Without telling, my neurosurgeon swapped out my non-programmable anti-siphoning shunt with a programmable one...that is controlled by magnets. Irony, right?

Luckily, I've been able to keep working the same job, I just have to be extra careful around magnets. I mostly work on beam diagnostics anyway.

Edit: I forgot to answer your last question. The valve is not noticeable at all. No one can tell that I have anything wrong with me by looking at me.

P2000Camaro11 karma

Ive actually known 2 people with hydrocephalus. One was a girl I kinda dated (Steph?? Lol) The other was my "cousin", who also had spinabifida (spelling).

My cousim ended up passing away a while ago.. She said she had a headache and went to sleep.. that was it

I was always paranoid with the girl afterward. If she said she had a headache, Id freak out.lol.

I guess my question is, do you or people around you get paranoid when you get headaches?

HydroCyborg21 karma

Oh god...yes. All the time! Growing up, I had to hide if I had a headache or my mom would freak out. I had "sneak" tylenol so she wouldn't know I was taking it. At one point after a round of 3 surgeries, the school nurse sent a memo out to my teachers that if I complained of a headache to call 911 immediately. It was absolutely ridiculous. It's actually a lot like this.

I'm sorry about your cousin.

specklesinc11 karma

my ex husband had hydrcephalus and was able to maintain until age 40 without a shunt. we found out because he became dizzy and disoriented more and more often. he also had excruciating pain with any altitude change. so the doctor he went to did the surgery and installed the shunt. at the same time one of my coworkers showed me how to manipulate my husbands head when the cold weather would cause the flow through the shunt to go sluggish or stop. are there other ways to ease discomfort and what conditions do you most commonly find pain or binding to be caused?

HydroCyborg8 karma

I have to have a very soft pillow at night or I wake up with headaches. Usually lying down will help if I feel "off".

I find lying on my stomach with my head facing right (towards the shunt) causes a migraine, but the migraine won't come on until after I get up so I won't even know that I've caused it. It's really annoying because I forget pretty easily.

Ticklish_Kink_Wife9 karma

Another 30f with hydrocephalus, as well as spina bifida. This year I had my vp shiny replaced with a magnetically controlled shunt.

Have you ever had one of those, and how well did it/does it seem to be working for you if so? Thanks!

HydroCyborg4 karma

The one I have now is programmable (magnetically controlled). My valve is stuck so I can't get it adjusted with magnets anymore (just my luck). It feel much bigger than the non-programmable shunt. I had non-programmable ones for 26 years and never once felt like I had a shunt. I can feel the programmable one though, even after 5 years with it.

theHangedGod9 karma

How has this affected the romantic relationships in your life?

HydroCyborg10 karma

It hasn't affected them at all.

wastelandherosan8 karma

What did you do for your 30th birthday?

HydroCyborg21 karma

Well, my birthday is the day after halloween. So I threw a big Halloween party/orgy.

fibonacci_112357 karma

Thank you so so so sooooooo much for doing this AMA. My gf lives with this condition as well and it has been a real struggle at times. Luckily she has had 5 brain surgeries only if I'm not mistaken.

All the info here seems so useful! I sent her the link so she can read this thread when she gets out of work. You've made me so hopeful now that she may find some more relief with your shared knowledge!

Since this is an AMA, what are the major no no's that you would advice against for someone with hydrocephalus?

HydroCyborg6 karma

Letting someone tell you that you can't do something. Hydrocephalus doesn't define you. If you think you can't do something, it's because you can't to it yet.

lightbluesunlight5 karma

Do you ever have any discomfort or pain due to the valve/surgeries?

(Stay strong, you got this <3)

HydroCyborg9 karma

Not really because of the surgeries. Usually they relieve so much pain that I don't need to take anything (not even tylenol) afterward.

The valve can cause pain when it's very lightly tapped at just the right spot. It's really annoying. Part of my head is pretty numb from being cut open all the time, but one little tap in the wrong spot and I'm in horrible pain and have a migraine. This can last a few seconds to several minutes.

IT_guys_rule4 karma

When is Half-Life 3 coming out?

HydroCyborg3 karma

Keep crossing your fingers and maybe it come out soon!

peter_lynched3 karma

How does this affect your ability to make and keep friends?

HydroCyborg5 karma

It doesn't affect it in the slightest. Well, except I like to test how squeamish people are when we do get on the subject of hydrocephalus. I'll usually point out the tube in my neck (kind of visible when you know what you're looking for) and wiggle it around. If they are really grossed out or freaked out by it, I don't think we'll get along very well :P

Stimperonovitch3 karma

Is adjusting your valve painful? Can you tell when it's being adjusted or feel a difference right away? I wish you the best of luck in the future.

HydroCyborg12 karma

Is adjusting your valve painful?

It can be, but typically no.

Can you tell when it's being adjusted or feel a difference right away?

Yes! It's a really weird feeling to describe. I feel and hear a click in my head and feel a brief "squishing" feeling like water rushing through a restricted opening (think putting your finger over the end of a garden hose) in my head. Then I typically have an excruciating headache (think of a migraine, but only IV pain meds will make it subside and only a little) for about 1 hour until the fluid settles into the correct flow rate. If it's set wrong, the headache gets worse.

Challengeaccepted33 karma

What do you do with the fluid? I can't imagine you pour it down the drain.

HydroCyborg13 karma

The fluid isn't drained externally. It's absorbed into the tissue in my abdomen internally.

That being said, I have accidentally tasted my spinal fluid when it leaked from my head after a botched surgery. Following that, I was in the ICU for a week while my spinal fluid was drained into a bag next to my bed. I was 11 at the time.

ElViejoHG3 karma

Your shunt looks really cool, you are like Iron Man. I was gonna ask if you could do any kind of sport but already read that you do jiujitsu, that's great. So my question will be what do you do for a living?

Edit: Well too many people asked that too soo... Tell me something you are very good at

HydroCyborg4 karma

I'm a mechanical engineer and I build particle accelerators.

model_citiz3n1 karma

1 in 500 is a lot. Without surgery, do these people typically survive into adulthood? Is it possible that people may have this and not know?

HydroCyborg3 karma

Without surgery, the mortality rate is pretty high. There are many cases though of mild hydrocephalus being managed without a shunt placement.

It's not likely for a child or young adult to have this and not know it (although it does happen), but there is something called "Normal Pressure Hydrocephalus" (NPH) that can affect adults over the age of 50. It often presents as Alzheimer symptoms. Except, unlike Alzheimer's, NPH is completely treatable and the effects can be reversed when treated.

johnchapel-2 karma

Did you used to play second life?

HydroCyborg1 karma

No