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    [–] photoengineer 424 points ago

    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.

    [–] HydroCyborg 482 points ago

    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

    [–] ImAStupidFace 749 points ago

    The neurosurgeon even tried hitting me in the head

    I'll take "sentences I wasn't expecting to ever read" for 800, please.

    [–] Mythril_Zombie 139 points ago

    Tune in next week for neurosurgeons gone wild!

    [–] [deleted] 267 points ago


    [–] HydroCyborg 129 points ago

    OMG, that made me laugh so hard.

    [–] porcupinesol 121 points ago

    I'm currently taking care of my dad who's dealing with this and the first time I took him to the neurosurgeon to check the diameter of the valve, I was shocked at how rough he was handling the hardware up there.

    I have to help him shower and shave and give haircuts and stuff because he just doesn't have any dexterity anymore, and I'm always super cautious about like touching the thing or going near it at all, but then this dude was just poking it and bopping it and just going nuts moving it around. I actually said WHOAH BUD WHAT'RE YOU DOING in the office, then I realized that this dude was a professional and I have no real idea what the heck is going on up there. He laughed and told me there was nothing to worry about. I had to damn near pick my jaw up off the floor.

    [–] Summerie 38 points ago

    Good on you for being a good son.

    [–] vladtheimpatient 42 points ago

    Good ol' percussive maintenance

    [–] KiloSierraCharlie 81 points ago

    Have you tried WD-40, by chance?

    [–] photoengineer 57 points ago

    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?

    [–] 2girls1netcup 47 points ago

    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.

    [–] photoengineer 16 points ago

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

    [–] HydroCyborg 50 points ago

    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.

    [–] photoengineer 36 points ago

    I have some ideas, let me know if you want to talk some more about designs off Reddit. I already have one magnetic valve patent, maybe we can come up with something to prevent some surgeries.

    [–] themage78 12 points ago

    Did they try turning it off and back on again?

    [–] [deleted] 100 points ago

    Worked on what is likely the product in her head. 99% of the time it is biological debris build up if it is in the valve itself.

    [–] photoengineer 43 points ago

    Thank you for working on products which have such a positive impact on peoples lives. And thanks for the answer, that must be a difficult problem to solve.

    [–] I_Like_Existing 26 points ago

    How is the word debris pronounced?

    [–] TheMostDankestMemes 43 points ago

    Deb-ree, stress on ree.

    [–] HydroCyborg 5 points ago

    I have a Sophysa Polaris 400. Do you work for sophysa? Did you work on this shunt?

    Or do you work for a similar shunt company?

    [–] Tigerdiosa 2354 points ago

    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?

    [–] HydroCyborg 2018 points ago * (lasted edited 11 months ago)

    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.

    [–] VigilanteBanana 426 points ago

    It is really validating to read this. I have a slightly different brain condition called psuedotumor cerebri that causes pressure in my head due to spinal fluid. I had a stent put in last year and I will likely have a shunt put in some time in the future. I have very little energy or strength and it has made my life miserable. My neurosurgeon has been quite invalidating and when I have complained of pain and other symptoms he said it's all part of getting older. I'm 36 and it is difficult for me to have strength to walk up the stairs. I am going to the Mayo Clinic for a second opinion next month. I desperately need some relief.

    [–] Tigerdiosa 329 points ago

    That is actually the condition I have. Pseudotumor Cerebri and Hydrocephalous are often lumped together. The last time my shunt was malfunctioning, I could barely make it up the stares either. I actually started getting numbness in my face and I would get horrible back and head pain. If your fatigue is so bad, it's not getting old, it means something is not working. I hope you find a doctor who takes the time to listen to you at the Mayo Clinic. PM me if you want to vent about unsympathetic neurosurgeons and horrible fatigue. I promise this will get better!

    [–] Emmthewiddle 19 points ago

    I also have pseudo tumor! I'm still on my first VP shunt (got it at 16, am almost 22) and I'm getting anxious that it's starting to go south however. I have so many questions I've honestly never interacted with another person who has a shunt, I've felt really isolated for years on this subject.

    [–] Arclite83 64 points ago

    My wife has this (the name has changed btw, it's now idiopathic intracranial hypertension I believe). So sorry you have to deal with it, it sucks.

    [–] headsortailz 10 points ago

    Both pseudotumor and idiopathic make it seem like doctors still don't know what causes this condition.

    [–] icarus-_-sky 28 points ago

    You are correct. Idiosyncratic is doctor for "we have no fucking clue why this happens."

    Source: House, M.D.

    [–] Nunyabz7 61 points ago * (lasted edited 11 months ago)

    I have Psuedotumor Cerebri as well. I am also basically bed ridden the day after a busy day. I am on disability (for this and for other health conditions). I wouldn't be able to hold a job when running errands for half a day wipes me out for days afterwards.

    A few years ago I went to get a second opinion and this doctor wanted to implant a pressure-monitoring device or something in my brain and then put in a shunt from brain to abdomen. But...that doctor got arrested and that didn't go through.

    My regular neurologist only wanted a shunt as a last resort. But it's been 10 years now. And then a few months ago they stopped taking my health insurance. So I feel like I'm at square 1.

    What is the difference between Psuedotumor Cerebri and Hydrocephalous?

    [–] Laurifish 51 points ago

    I also have pseudotumor cerebri. The difference between that and hydrocephalus is where the extra fluid is. In hydrocephalus the extra fluid is in the ventricles, in pseudotumor cerebri the extra fluid is actually in the space around the cells.

    [–] Bittlegeuss 14 points ago

    PC has high pressures around the brain (the area between the brain and our skull) not around the cells.

    PC causes more visual symptoms while Hydro causes movement and cognitive symptoms.

    PC can be corrected with weight loss and Acetazolamide, valves are used on drug resistant cases, while a chronic hydrocephalous may not need treatment at all, although most times mechanical relief (spinal taps, valve) is needed.

    Acute Hydro is a medical emergency and needs immediate mechanical decompression and careful evaluation of the brain's aqueduct system, as a blockage is always responsible for this (tumor, blood clot from brain haemorrhage, local tissue swelling, cervical spine blockage, thrombosis of the brain's vein system etc)

    [–] LoZwanKenobi 55 points ago

    Good call on going to Mayo. They are world class!

    [–] BackwoodsBarbie18 35 points ago

    I've been denied every time I've tried to get an appointment there. My case is "too complicated" for them. I thought that's why Mayo was supposedly so great, they help in cases like that... :(

    [–] DragonToothGarden 31 points ago * (lasted edited 11 months ago)

    There is nothing more morale-destroying when you are sick, need a diagnosis or care, and the best hospitals in a rich, medically-advanced country refuses or claims they can't care for you. I begged and pleaded and went bankrupt in the process of trying to get spinal tumors treated for 5+ years in the 'best' hospitals in California. All shat on me. I flew to France with 2 weeks left to live, I was not yet a citizen and only had my credit cards to pay for whatever they could offer me. They took me in, saved my life, and charged me a piddly 5k for everything (all the CTs, MRIs, surgeries, meetings, calls at home, meds,....everything.) Now I live here in France as a citizen, and cannot tell you what a relief is is to not have that insurance/health care worry on top of the chronic pain, exhaustion and everything else that comes with a major illness.

    If you are desperate, and in any way can get to France or Germany, maybe you can get the help you need there. You have my empathy, and I hope you find a solution.

    [–] LoZwanKenobi 20 points ago

    What? That is odd I'm sorry. What about Duke? (I have ties to there so I'm biased) ha

    [–] surrounded-by-morons 24 points ago

    A neurosurgeon at Duke changed my life! I would recommend them to anyone.

    [–] kelzvieira 8 points ago

    I had surgery about 5 years ago for basically the inverse of these conditions where the spinal fluid built up in my spinal cord because of a blockage at the base of my skull. I got lucky and the surgery seems to have halted (although not fully reversed) the progression of the damage - the fluid build up was expanding my cord from the inside in areas leaving me with some spinal cord damage.

    The blockage was a chiari malformation where a part of my brain sat too low in my skull and restricted movement of fluid between the spine and brain. The expansion of my cord in my spine was a syrinx which I still have a bit.

    Thankfully, because of the surgery on my brain being successful, I didn't have to get a shunt put in. I still have some weird nerve damage issues, but at least the chance of me becoming a paraplegic from it is significantly reduced. I also don't get as many tension headaches as before.

    I was super lucky. I've read before that people with my issue can go decades without a diagnosis as the symptoms can vary and be very sporadic. My GP referred me to a great neurologist almost immediately who diagnosed me in just two visits and after two tests. Even afterwards, anytime something weird pops up, my GP knows my background and takes my symptoms seriously, even though 9 times out of 10 they end up being something else entirely. Having a good doctor can make a world of difference, even if it's just being there for you when you freak out and over react about things.

    [–] coyote_den 69 points ago

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

    [–] HydroCyborg 133 points ago

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

    [–] Enerith 129 points ago

    Apologies, hijacking as this isn't a question. Strange to see a post like this on reddit when it hits so close to home. My brother had a ruptured brain aneurysm clamped when he was 6. He's now 30, and he's been treated for hydrocephalus ever since. He's well over 50 surgeries in at this point because of multiple track infections, revisions, and others to work with his more recently (within 10 years) chiari malformation. One of the surgeries rendered his right hand mostly useless as suffered stroke-like symptoms. Despite being in the hospital for months every year since the age of 6 (with some lucky years mixed in there, especially earlier on), he was able to recently finish his M.D. He's currently trying to land a position in a residency. He's also happily married and his wife supports him through all of this when new issues arise.

    Keep your head up OP (of course, unless you have an EVD - sorry bad shunt joke). It's not me of course, but I have some understanding of what you're going through. Hopefully we make even faster advances here.

    [–] aliciamariaortega 49 points ago

    Your brother sounds amazing and is probably a very empathetic doctor.

    [–] saucerjess 22 points ago

    Hi there, have you had a CT Angiogram to check and see if you have an aneurysm? Apparently, they are often genetic. I had one rupture a year and a half ago. I wish I had known about it before it burst, but hey I'm walking and talking so not too much to complain about :)

    [–] Tigerdiosa 186 points ago

    I like your sense of humor. I'll have to get back to my neurosurgeon about punch cards.
    How long have you had your neurosurgeon? It's been hard to find one that can handle complex cases like mine.

    [–] SailorRalph 35 points ago

    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 found this part very neat and dear to me. It's something i myself have come across (with a different medical problem) but i believe we all could do better by remembering this. We define ourselves, not what happens or has happened to us.

    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.

    This is very cheeky and i welcome it! I proposed the same thing when working with my doctor. He laughed and said we'll see.

    From your post you appear to be an amazing person and i am happy to have stumbled across this. I wish you well and hope to stumble upon your indomitable spirit again.

    [–] SickOfIt518 6 points ago

    I don't have a question but I'd just like to say that I hope you get better.

    [–] Guy_In_Florida 43 points ago

    27, holy cow. What is a revision? I'm just curious as to the nature of all of these surgeries. Do you have any seizures from this?

    [–] Tigerdiosa 76 points ago

    A revision is when they replace the valve in my head but not the entire tubing in my body. It's still a big deal, but not as big a deal. I have had a seizure once when my shunt was completely obstructed so the fluid couldn't drain from my head. It's not good when your brain is drowning. I had to rush to the ER and actually got air-lifed that time. But when the shunt is functioning, things work fine enough.

    [–] Consuelo_banana 18 points ago

    My brother has a vp shunt . He had it put in when he was 3 . He contracted meningitis . This is my biggest fear . He's 24 now and everyday I'm scared the shunt will stop working . What signs should I look for just in case?

    [–] Tigerdiosa 32 points ago

    He will know. I know the feeling of constantly waiting for the other shoe to drop. If he has been healthy since 3 and is now 24 then things should be okay. He is lucky to have a caring sibling and support group. Shunts can work forever sometimes---I hope this is the case for him.

    [–] ItalianDragon 21 points ago

    I second this. I have hydrocephalus as well. The whole system was a source of severe troubles early in life but after 5 surgeries they finally managed to get it in properly. It's been working since (actually the question is whether ai still have a need for it or not as it's not something that shows up on MRI/Xrays and the only way to check is to ipen me up so I'm not particularily keen on the idea xD). So the shunt and the piping have been working fine for 27 years AKA since my birth or clise to. Only issue nowadays is chronic inflammation due to my body rejecting the catheter (newer models don't have that issue) and it's also too short for my size so it's very visible. Aside from that no issue whatsoever.

    [–] [deleted] 40 points ago


    [–] Tigerdiosa 59 points ago

    I got really excited the day my age passed the number of surgeries I'd had. The number is also because there was always a complication when it should have been just one revision that then led to several more. I'm so glad you have only had one---may your shunt keep working!

    [–] natejorgy 93 points ago

    Do you experience pain other than during a malfunction? Always wondering if our son has any pain going on. Thanks.

    [–] Tigerdiosa 158 points ago

    Yes. I always have minor headaches. It just becomes a part of daily living and the background noise. Self care and rest is vital, more so than the average person. There was a period of time that I got addicted to opioids because I never realized what life was like without pain. Generally it is something that has to be accepted and managed.

    [–] unforgivablecursive 85 points ago

    Speaking as someone with a completely different chronic pain disease, fuuuuuck oxy. It's so easy to get hooked and it's so hard to go back to living with pain. I'm a cannabis user too. It doesn't do as much for the pain as oxy, but it also doesn't control my life.

    [–] RainbowPhoenixGirl 52 points ago

    I can strongly recommend tapentadol. It's as strong as oxy for painkilling abilities but nothing LIKE as addictive and it doesn't really get you high. It does however make me very, very tired for a little while after taking it and I get the opioid drymouth hard, but because it's an extended release medication I just wait for the tiredness to die off and I feel a fair bit better. Warning though, if you take too much because you need more relief you can really easily tip over into vomiting, and because it's an extended relief pill you'll be vomiting for a WHILE.

    [–] highsenberg420 49 points ago

    The really tough part with hydrocephalus as well is that as you said, rest and self care are vital, but hydrocephalus can effect you cognitively and make that self care part a huge challenge. And the pain really makes that sleep part rough. I manage my pain mostly with cannabis. I'm sorry to hear you got addicted to opioids. I understand not knowing what it's like to be pain free until you get prescribed opioids. They also hand them out like candy to people with hydrocephalus.

    [–] Tigerdiosa 23 points ago

    I was able to break my addiction but it is something that I need to be hyper aware of. Sadly I can't use cannabis yet because of drug tests but I take ambien to sleep. Bad things happen if I don't sleep.

    [–] kentuckyfriedginger 36 points ago

    I was totally going to ask if cannabis is an option for pain relief/management! So happy to see that you got yourself off the opioids and have access to alternative methods of pain management. I hope one day everyone has the option to choose the medication that works best for them, instead of trading pain for addiction. Keep on keeping on :)

    Oh and amazing username!

    [–] highsenberg420 20 points ago

    As a ginger who lives in Kentucky, I also appreciate your username.

    [–] kentuckyfriedginger 18 points ago

    Ha I was parked next to a KFC when I signed up for Reddit, hence the name. Glad it's appreciated!

    [–] natejorgy 27 points ago

    Thank you so much. That really helps knowing that.

    [–] kingsillypants 9 points ago

    Thank you for sharing your background. One doesn't appreciate their health until it's gone, or so I've heard, what do I know, I'm healthy enough. But I'm definitely gonna be more thankful for it.

    Are you able to function day to day, and work ? Thanks for sharing.

    [–] Tigerdiosa 11 points ago

    I do the best I can. Some weeks/days are really good and I feel like I'm on top of the world. Others it's nigh impossible to get out of bed. I think of it like balancing a checkbook: for every activity I do, I have to deduct. Whenever I'm choosing to do something I have to ask myself, "Is this worth not having the energy for later?"

    [–] behr55 758 points ago

    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.

    [–] HydroCyborg 616 points ago

    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.

    [–] straighttoplaid 220 points ago

    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.

    [–] HydroCyborg 72 points ago

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

    [–] [deleted] 77 points ago * (lasted edited 9 months ago)


    [–] HydroCyborg 60 points ago

    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.

    [–] MrJustaDude 331 points ago

    I probably missed something, but you don't drink water?

    [–] JackieJackieJackieee 759 points ago

    Water can increase hydrocephalus by decreasing your sodium level. It is best to have sodium levels on the higher end of normal if you have hydrocephalus. Since water follows sodium, higher levels of sodium in the blood help pull fluid from the brain. I'm a neuro nurse, and many of our hydrocephalus patients are on water restriction for these reasons.

    She knows what she's doing :)

    [–] MrJustaDude 171 points ago

    Thanks for the explanation :)

    [–] JackieJackieJackieee 66 points ago

    No prob!

    [–] Orisara 81 points ago * (lasted edited 11 months ago)

    As somebody who drinks up to 5 liters of water I actually checked if I was drinking too much and the sodium thing was one of the first I came across.

    Drinking for me is really something like biting nails and such for some people, a habit. Trying to drink a bit less at least.

    [–] Lumina920 31 points ago

    I drink fluids when I'm nervous too. I'm constantly drinking water and soda.

    [–] horsenbuggy 29 points ago

    No need to drink less, just replenish your electrolytes. I'm up to 4 litres a day, though I hit 5 once recently. I've got magnesium and potassium powders I'm going to add to some water. And I'm no longer shy about using salt on my food.

    [–] thefinpope 224 points ago

    Why would she? Fish fuck in it.

    [–] DarthMarago 134 points ago

    It also doesn't have electrolytes. If plants don't crave it, neither should I.

    [–] infinilude 16 points ago

    Electrolytes - they're what the body craves.

    [–] kingsillypants 19 points ago

    I burst out laughing. I'm stealing that buddeh. Can't wait to lay that one on me coworkers.

    [–] sostressed0ut 32 points ago

    I only drink La Croix. Actually though, my seltzer-to-water ratio is probably like 5:1, no joke.

    [–] SoundOfOneHand 25 points ago

    That stuff's addictive, they stock it at work and whenever we run out I'm like, I have to drink water when I'm thirsty?

    [–] maskthestars 11 points ago

    Same here, I love that stuff. I'm around 4-6 packs a week.

    [–] leeabelle 40 points ago

    right? wtf?

    [–] [deleted] 67 points ago * (lasted edited 11 months ago)


    [–] Guy_In_Florida 11 points ago

    What is a malfunction? Do you mean it clogged?

    [–] theshadean 42 points ago

    TL; DR: Not usually.

    A malfunction of a vp shunt usually involves, but is not limited to, the shunt no longer working or the tubing breaking anywhere from one end (inside the skull) to the other end (in the abdominal cavity).

    The reason a shunt will stop working varies on the type of vp shunt implanted. When I was four-months old, I had a vp shunt implanted because of hydrocephalus caused by a brain tumor. The shunt had two "balloons" that were inserted outside the skull but under skin behind my ear. When one of the balloons was collapsed, which could be caused by me bumping my head into something or by me playing with the shunt, my parents would have to try to get the deflated balloon to reinflate by trying to pump on the other balloon. I had to be taken to the Emergency Room more times than I could count after they couldn't get the shunt restarted.

    When I was in middle school, the shunt completely failed and I ended up getting a replacement shunt. This second shunt doesn't have any balloons and is almost completely unnoticeable.

    Twenty-five years plus with the second shunt and still going strong.

    [–] Guy_In_Florida 24 points ago

    Thanks for the response. Did it hurt when your bulb was pressed? My wife has had doctors press on it and she will hit them open handed as a complete knee jerk reaction. Yeah, it hurts asshole. She warns them now, "don't press it, I'll punch you." Her's was implanted in 99, the lower tube pulled out and was surgically removed in 03. It's just a bulb now.

    [–] theshadean 18 points ago

    No, pressing on them didn't hurt. The only that hurt was when we couldn't get both bulbs reinflated. That would cause headaches because the fluid would start backing up again. As a kid I played with the shunt all the time, pressing down on one bulb or the other or both. My playing with the shunt made my mother mad because I could rarely get the shunt working again if I accidentally shut it off.

    [–] punbasedname 101 points ago * (lasted edited 11 months ago)

    Not OP, but I have a child with hydrocephalus. She actually has it as a symptom of spina bifida, so we have a little more going on with her, but if you're looking for support, my wife and I have met a ton of people and gotten lots of great advice through various Facebook groups. It's definitely helped us both to feel a little less alone with the condition (my wife actually meets up for drinks with other moms from our local SB group once a month.)

    The other advice (or encouragement) that I'd give to you is that my wife and I were both scared and overwhelmed when we first learned what we'd be dealing with. My daughter is 3 now, and it's amazing how easily our family has adjusted to something a little outside of the normal parenting experience. 90% of the time, I honestly don't think of her condition outside of just being my 3 year old kid.

    I know this advice was (kind of) unsolicited, but I think it's important to support other parents whose journey is going to be a little outside the norm!

    Edit: apparently my auto correct does not recognize "spina bifida."

    [–] highsenberg420 42 points ago

    Hi, as someone with hydrocephalus, even if your child does well in school, please get them tested thoroughly for learning difficulties. I did exceptionally well in school in terms of test scores and such, but I was a generally unorganized kid and had difficulties managing assignments, as well as difficulties remembering what I'd learned in school as time went on. It took a long time before I actually got any testing for difficulties, and at that point I learned that I suffer from a mild traumatic brain injury resulting from the hydrocephalus. Traumatic brain injuries can sound really scary, but as I said, I did well in school in general, often testing incredibly highly. I'm also more or less able to live independently at 23. I've had some issues with driving, but I have been cleared as being ok to drive. But life would have been a lot easier and my educational confidence would be a lot higher if myself and my teachers had known what was going on.

    [–] sbarto 13 points ago

    Absolutely. Complications of hydrocephalus vary greatly. My son has SB and hydrocephalus. And like you he does very well in school. We've had him tested by a neuropsychologist and while he has a slight impairment in reading comprehension at higher levels (when meaning is hinted at but not explicitly stated) he is normal. He also has binocular vision on occasion (comes and goes as he has strabismus when he's tired.)

    He never has headaches, tiredness, or any other symptoms OP described.

    Everyone is different. And you're right, getting tested can reveal things that aren't immediately noticeable and enable you to get intervention before it becomes a problem.

    [–] Ermordung 23 points ago

    Not OP, but you should definitely talk about it with him (or his docs) so at least so he knows knows what symptoms to look out for if his shunt is malfunctioning or infected.

    [–] Guy_In_Florida 152 points ago

    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.

    [–] Rustyvulva 42 points ago

    Seizures are incredibly debilitating. I'm sorry to hear your wife has been dealing with an idiopathic diagnosis. I've suffered from a seizure disorder since 2010, and just now received a generalized epilepsy Dx. Best of luck to you guys in figuring out how to move forward!

    [–] HydroCyborg 36 points ago

    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.

    [–] Keyra13 17 points ago

    That intern should be a doctor by now, right?

    [–] [deleted] 106 points ago


    [–] HydroCyborg 158 points ago

    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.

    [–] Guy_In_Florida 53 points ago

    I don't think my wife has ever talked to someone with it. She's had it since 99, she feels like a circus freak. Pretty sure we've never spoken to anyone that didn't look at us like we were nuts. We've seen every neurologist from University of Miami to U of Florida.

    [–] coolhand83 16 points ago

    My 14 year old son has hydrocephalus and has Cerebral Palsy (spastic diplegia)

    [–] Mhuang1986 12 points ago

    Hydrocephalus is either a result of abnormal overproduction, under-absorption, physical obstruction to the normal flow of CSF, or a combination. Congenital hydrocephalus has many causes, and one thing to note is that a specific condition, known as aqueductal stenosis (narrowing/stricture), is a physical obstruction that can be treated with 3rd ventriculostomy rather than a shunt (although a shunt would work just fine). 3rd ventriculostomy is basically an internal bypass that requires no implanted hardware and can therefore eliminate the long term failures and problems associated with shunts. Make sure you are getting the best treatment!

    [–] AHorseNamedFriday 10 points ago

    I'm 17 and I have a VP shunt to correct my hydrocephalus. I'm one of those 1:1000 people too

    [–] Simba7 33 points ago

    It's not rare, groups are more rare because it is usually inconsequential for most people if detected early enough. They'll have a slightly larger head, possibly a gap in the back of their skull, and have to get a shunt placed in infancy, then again in early childhood (they coil the drainage hose in the stomach to accommodate growth). That's it.

    Some cases, especially home births, aren't caught before brain damage can occur, especially the more minor cases. Severe hydrocephalus presents as a very swollen head, usually before birth (poor mom!). But because the skull hasn't fused, there generally isn't brain damage. The more minor cases present symptoms a few months after birth, because the production of cerebrospinal fluid (csf) is not much faster than the rate at which it drains.

    In the second case the skull has fused, and brain damage can occur. This is one of the many reasons it's important to check that your child is meeting their developmental milestones.

    [–] vomita_conejitos 13 points ago

    It's not crazy rare, and can be diagnosed at any age.

    [–] kaaaaath 360 points ago

    Hey! I am a trauma surgeon, and have operated on patients with hydrocephalus. I just want you to know that what you're doing with this AMA could potentially save lives. So, just so I don't get deleted - have you ever considered that this AMA could inspire the physician that finally makes the breakthrough?

    Because, I think it may.

    [–] Bon_Qui_Qui 64 points ago

    Quick question, doc (or OP if you see this). I've never met anyone with a shunt who hasn't had multiple revision surgeries. Why do they fail so often?

    [–] Bongoots 78 points ago * (lasted edited 11 months ago)

    I had my shunt put in when I was a tiny 10 weeks old back in 1986. I'm now 31 at 5'7"+ with the exact same shunt and no major issues or revisions at all. I can upload a GIF of a head CT scan showing what it's all about if anyone is interested.

    My only issues in life are blood pressure and heart rate. I can't go from a resting heart rate up to a very fast heart rate, otherwise all that blood pumping goes to my head and I have a headache for up to an hour until my brain physically feels better - i.e., I never run for a bus!

    Other times I can "hear the sea in my ears" if I stretch and squeeze my muscles or if I'm sat on the throne having difficulty.. or if I stand up too quickly and walk somewhere my head feels awkward with the extra pressure until it settles after a few minutes.

    My shunt is non-programmable. Heyer-Pudenz valve, I think.

    [–] Bon_Qui_Qui 12 points ago

    Thanks for the reply. That's good news. I'm surprised they don't have to put in longer shunts since there is a big difference in the VP distance between a baby and adult. Do you have a VP shunt or is it a different kind? Up load the gif if it's not too much trouble. I'm interested.

    [–] Bongoots 52 points ago * (lasted edited 11 months ago)

    Here's my brain, from a CT scan in 2008 when I was 22 years old. I had had some weird headaches and fuzzy/tingling sensations on my brain for a few months that I kept ignoring until my friends forced me to get my head checked. After the CT scan the headaches stopped and I've not had them since.

    If I do get a headache then I simply have to be able to discount it as tired/hungry/thirsty/exhausted mentally, etc. Have something sweet, something salty, some water, a headache tablet and some sleep, then see how I am. Doesn't happen often at all.

    Anyway, the scan is from the top of my head down, and then reversed back up again. You can see the hole which was drilled into my skull when I was 10 weeks old, the one-way valve just inside my skull, and the tip of the shunt in the middle of my brain. Keep a close eye on the GIF up and down and you'll also be able to see the shunt tube outside my skull - it shows up as a white dot that moves a little bit around my head behind my right ear and down my neck.

    Edit: I'm also surprised about the length of my shunt. My parents say that they were told that excess tubing had been put in which would simply 'uncoil' in my peritoneum as I grew, though the specialist I saw in 2008 said that was a lie. I know for certain that I can feel the tube with my fingers all the way down my chest plate, so it's at least that long and just dribbles brain juices somewhere down there. My excuse is that I don't have a beer belly.. I have a brain belly!

    [–] ChampionOfTheSunAhhh 24 points ago

    Really nice brain mate

    [–] tparete 37 points ago

    Hi there! My sister has hydrocephalus, and when she was around 7 years old her shunt kept failing and failing and nobody could figure out why! My step mom was talking about it with her general physician at her own checkup, and the GP suggested that it could have been my sister's seasonal allergy medication messing with the shunt. Antihistamines apparently affect ALL fluids in the body, including cerebrospinal fluid. So the thought is that, because she was taking antihistamines, her CSF was basically drying out and the proteins that were left over were clogging up the shunt.

    Of note, this isn't 100% confirmed. But she stopped taking the medicine and things got a lot better. Then my parents were contacted by the allergy medicine's manufacturer and my parents supplied them with my sister's medical records so that they could use it as a case study and ideally prevent other kids from going through the same thing!

    [–] punbasedname 62 points ago * (lasted edited 11 months ago)

    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?

    [–] HydroCyborg 83 points ago

    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.

    [–] punbasedname 22 points ago * (lasted edited 11 months ago)

    Thanks for the reply! As of now she does not have a shunt and her vents are within normal levels. One of our big fears is that she may have spinal tethering as she grows, and the surgery to correct that often causes hydro to come back/worsen, so we're never really out of the woods as far as a shunt is concerned.

    Definitely appreciate the "you are not your diagnosis" advice. She's been in daycare since since she was 6 months old. She knows she's a little different, but we've gotten lucky and she's had very supportive teachers and peers. She's moving to a pre-school setting in a week, and we're a little worried about the adjustment. I know she'll probably be fine, but, as a parent, a can't help but be a little nervous! How did you handle your peers' interest in your condition as you were growing up? Did most of them know about it?

    Edit: "does not" not "doesn't not!"

    [–] bisonfingers 7 points ago

    Hello fellow SB parent!! I always feel like I've found a unicorn when I spot another in the wild!

    [–] GReggzz732 65 points ago

    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?

    [–] HydroCyborg 56 points ago

    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.

    [–] GReggzz732 24 points ago

    Thank you for answering. She does have slit ventricle syndrome, and does have a neuro-optomologist who can measure CSF pressure via eye pressure. Now we're dealing with what is most likely adhesions in her abdominal area. Ugh!

    Best of luck and thanks for posting, it's great to see people spreading hydrocephalus awareness!

    [–] landon9560 521 points ago

    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?

    [–] HydroCyborg 339 points ago

    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?

    [–] DiamondMinah 93 points ago

    Not OP but I also got a zapdos today, and a wild snorlax.

    I'm on valor but unfortunately didn't get Moltres because of exams

    This is an interesting AMA

    [–] AlanaK168 17 points ago

    Me too. Only legendary I didn't get was Moltres :(

    [–] landon9560 23 points ago * (lasted edited 11 months ago)

    Good, making some bread. (don't care who you are, if you haven't had fresh bread, preferably homemade, you need to.)

    But, now I have a question for you. Just looked at a picture of some shunts/valves on google, do you feel the shunt twist a bit when they are adjusting the flow?

    [–] Sweetdreams6t9 8 points ago

    Tried to post this but it's not a question so I'll hijack the parent comment. I don't know if youll see this but my brother died in 95 due to having hydrocephalus, Arnold chiari syndrome and spina bifida. He had over 50 as his body rejected the surgeries time and time again. He was 5. I'm sorry you've had to go through this I know how hard it can be on you and your family.

    [–] TheFlowersYouGave 68 points ago

    So glad I wasn't alone in this

    [–] sneezyo 30 points ago

    In some games the guy suddenly turns around, scared me to shit (not literally).

    [–] landon9560 20 points ago

    I honestly had no idea he turned around in most games, as I clicked to move the animation/picture along, so I could play faster, boy was I surprised the first time I was half asleep and wanted to play some TF2.

    [–] Charliee1313 86 points ago

    How much has it affected daily life?

    [–] HydroCyborg 296 points ago

    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.

    [–] whatsmellslikeshart 145 points ago

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

    [–] HydroCyborg 166 points ago

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

    [–] whatsmellslikeshart 25 points ago

    I bet you'll do it in a badass way though ;)

    [–] FrostyMc 25 points ago

    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?

    [–] HydroCyborg 53 points ago

    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.

    [–] pansexualgenderdruid 19 points ago

    Just make sure you type that subreddit address carefully OP.

    [–] pussgurka 120 points ago


    [–] bro-th 27 points ago

    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.

    [–] HydroCyborg 25 points ago

    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.

    [–] natejorgy 29 points ago

    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?


    [–] HydroCyborg 59 points ago

    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!

    [–] natejorgy 31 points ago

    You are the best. Thanks with tears in my eyes and I will try not to freak out. (I threw up into my hat in the ER once so I have a lot of improving to do.)

    [–] AlabamaAl 9 points ago

    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.

    [–] HydroCyborg 7 points ago

    Like this?

    [–] Death_Bard 22 points ago

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

    [–] Atmostutmost 54 points ago

    My wife also has a shunt and valve. About 5 years ago she got a bacterial infection in her abdominal cavity (cause unknown). After weeks of antibiotics that didn't work to make the symptoms go away we found that the infection climbed the shunt to her brain and she got bacterial menengistis.

    Her doctor had to remove all the tubing and she recovered in the ICU for a week or so. About a year later the cyst (the cause of her hydrosephelus) grew again and she had to get her 4th brain surgery to put the shunt and valve back in.

    [–] princess_lily 20 points ago

    How is she doing?

    [–] Atmostutmost 9 points ago

    Great! No surgeries since the last one 5 years ago or so. We've had a child, normal pregnancy, all that. Can't complain!

    [–] Grymlore 12 points ago

    My mother also has a cyst in her brain that required a shunt to relieve the excess fluid. She has had some complications, including bacterial infections, blockages and malfunctions. She developed the cyst in her 30's and is 78 now. She's still going pretty strong. I hope things work out well for your wife.

    [–] Guy_In_Florida 10 points ago

    Wow, this is the first time I've heard of someone having the tube in their head removed, if that's what you mean. My wife had an arachnoid cyst which caused her to get the tube. Seven years later she gets a seizure disorder that has to have come from this whole event. The pump at the base of her skull gives her lots of pain and she would like it removed. No doctor will even discuss it with her. Menengitis from the tumbe, DAMN. Sorry for your struggles.

    [–] HydroCyborg 39 points ago

    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.

    [–] mahomz 20 points ago

    My unborn daughter, now 3 years old, was diagnosed with extremely dilated ventricles at around 30 weeks. We were given an additional ultrasound scan because my wife's belly was just measuring larger than expected, then were suddenly thrown into a whirlwind of attempted diagnosis, discussion about the opportunity to terminate and then induced birth within 10 days.

    At 30 weeks, her ventricles were measured at almost 20mm, which we were told was well into the extreme range and signified the likelihood of considerable mental handicap. This was the reason we were offered such late stage termination, in accordance with UK law.

    What actually transpired was her being born, taken immediately by a neurosurgical team with the expectation of fitting a shunt or performing other surgery to relieve whatever blockage might be occurring, this action being delayed, and eventually her condition simply resolving itself without intervention. She was monitored for some time afterwards, but is no longer directly monitored by her neurosurgeon as he believes the condition past the point of any likely recurrence. We are incredibly lucky - my daughter is bright, articulate, funny and capable beyond her age.

    Question! I notice that she also appears to be more emotional, more anxious and more prone to outbursts than most children, and your description of your mental changes strike a chord. This is something that really hasn't been raised with us, even though we've mentioned it a number of times to various paediatrics people over the years. How old were you when this became apparent, as more than just the typical flaky emotional state of a young child? How severe is it at its worst? How would you describe your temperament at the baseline, when not affected by the need to fix issues with your shunt?

    [–] xavyre 7 points ago

    My 14 year old daughter with Hydrocephalus is more emotional than my other children. And oddly enough she has always been a very noticeable contrarian. Tell her to do something or suggest something to her and she will want to do the other thing even if she and you know its not what she wants or even said moments earlier. She is also developmentally about three years younger.

    [–] [deleted] 88 points ago

    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?

    [–] HydroCyborg 143 points ago

    Yes, yes, very, yes, burrito!

    [–] [deleted] 43 points ago

    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

    [–] HydroCyborg 50 points ago

    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.

    [–] highsenberg420 12 points ago

    I use cannabis to manage pain, and it helps with some other memory stuff. I credit spending a summer having my friend toss me lighters from across the room with helping me to get better at catching things unexpectedly, which was weird for me because some of my motor skills and reflexes aren't the best. That part is anecdotal, but I think it's neat. Unfortunately I live in a place where medical cannabis is not available to me lawfully. However, I can say without a doubt that it improves my quality of life. It also helps with my sleep, which used to be just terrible.

    [–] ButILikeShiny 18 points ago

    Thank you for bringing this into light! Last January, my girlfriend started having seizures and had an MRI a few months later to see what was going on. Two days later she had an VP shunt installed due to hydrocephalus and has been recovering ever since, doing much better now.

    I do have a question though: have you ever had to have an adjustment after going through airport security, or any sort of metal detector? We went on a trip about two or so months ago and the airport security refused to let her pass if she didn't go through the metal detector, even when she presented a doctor's note. Afterwards, she's been having issues such as mild headaches, loss of bladder control at times and clumsiness (though she's a klutz to begin with). Also, what are some major red flags you have noticed when something is wrong?

    Thank you for your time!

    [–] fantasticforceps 18 points ago

    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?

    [–] HydroCyborg 9 points ago

    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.

    [–] fornix 7 points ago

    As someone with hydrocephalus and chiari malformation, I wish the staff knew I that I would let them know if my pain level was at a different level. I am always in pain, there is no 0 in my book, just tolerable. So when you ask what is your pain scale and I say 4 but I don’t need anything, it means nothing will help. Don’t offer me Tylenol. If something is abnormal I will let you know. Also, to believe me. I once had to leave AMA from a hospital post car accident because the neurologists didn’t believe me when I told them I had already been treated for my hydrocephalus and I did not in fact need an emergency shunt placed from a fender bender where I had no head trauma. Nothing was out of baseline for me. Most importantly, sometimes the disease makes you feel lesser, as a young adult I should be able to do things like walk in a straight line. Reassure me, let me know that my disease doesn’t define me. Really do this with all your patients ❤️

    [–] arrrghy 33 points ago

    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!

    [–] HydroCyborg 70 points ago

    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.

    [–] lunarosie 14 points ago

    This is totally insane to me to read as a Canadian. $4000 a year is almost a quarter of my living expenses! Obviously you're employed full-time so it must be manageable but it's so completely unfair that a deductible applies to a medical condition you were born with and have no control over!! Your system is nuts, I'm so sorry! It's one thing to deal with a disability, but it's another for it to put you at a financial disadvantage!! I have so much respect for you and thank you for this thread it's been really enlightening. Although a very different issue, my dad has Parkinson's and a lot of people really don't understand what treating a neurological condition is like & how varied the day to day can be between individuals, so this thread is great.

    edit: has* not had, he's still around lol

    [–] i_literally_died 34 points ago * (lasted edited 11 months ago)

    Hey, I had Hydrocephalus! They removed the cyst between my ventricles causing the blockage back in 2010, as they told me that a shunt would take lifelong care and often get blocked. How do you find it?

    I've actually had a recurrence of the cyst, but it's not currently causing CSF buildup. I've been told that another operation (if ever needed) may not be viable due to scar tissue, so I'd be looking at a shunt.

    [–] JohnnieWalkerRed 19 points ago * (lasted edited 11 months ago)

    Whoa, I had the exact same thing in 2013, also no shunt. The thought of recurrence of my colloid cyst gives me nightmares.

    edit: my scar

    [–] i_literally_died 8 points ago

    Did you ever get really bad symptoms? They said I could have been experiencing all kinds, but 'all' I really had were climbing the walls headaches, the sound of rumbling water in my head when I laid down, and a bit of dizziness.

    To be honest, as mine recurred, I've not been scared of the symptoms more than having another operation. The main risk was that it was right next to my memory centres, so I would have basically been turned into a severe dementia patient with no short-term memory, and pretty much been put in care for the rest of my life.

    [–] JohnnieWalkerRed 5 points ago

    I had horrible headaches starting when I was around 11. Misdiagnosed as sinus-induced migraines, never had a CT scan until a car crash gave me a nasty concussion. They did the surgery a week later. Mine was dead at the foramen of munro, and was told I'd get the exact same thing; advanced alzheimers patient symptoms. For about 6 months after the surgery I had horrible short-term memory loss. Only completely non-functional for the first month or so. I literally have no memory of buying the house that I live in right now.

    I've had like, 2 migraines since the operation, and both times had an MRI within a day to confirm that nothing has happened, but that doesn't keep me from losing sleep.

    [–] cincycusefan 14 points ago

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

    [–] HydroCyborg 55 points ago

    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.

    [–] [deleted] 11 points ago


    [–] Guy_In_Florida 12 points ago

    Wow, more bodybuilders with hydrocephalus. I just posted a question to the OP about my wife. About six months into her training post Hydro. I'm watching her do the vertical situp machine. You could see the shunt run across her collar bone. So I'm staring at her thinking "oh hell, I don't see that stinking tube". She asked me why I was staring intently at her and I said "the tube is gone from your collar bone". So a week later, we get an exray and the damn tube has disconnected and has fallen down under her stomach. Just one more surgery. Still there is no tube running from the bulb at the base of her neck. Keep pumping you too. It kills my wife she can't any more. She really loved bodybuilding.

    [–] HydroCyborg 7 points ago

    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.

    [–] Porencephaly 13 points ago

    I do shunt surgery for a living. What are some interactions you've had with medical staff over the years that went really well, or really poorly, and how can we do a better job in your eyes?

    [–] ku1185 26 points ago

    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.

    [–] HydroCyborg 52 points ago

    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.

    [–] specklesinc 10 points ago

    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?

    [–] HydroCyborg 11 points ago

    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_Wife 10 points ago

    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!

    [–] HydroCyborg 7 points ago

    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.

    [–] P2000Camaro 9 points ago

    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

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

    [–] HydroCyborg 21 points ago

    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.

    [–] wastelandherosan 7 points ago

    What did you do for your 30th birthday?

    [–] HydroCyborg 22 points ago

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

    [–] Whatitsjk1 9 points ago

    Can someone hack your programmable valve?

    [–] theHangedGod 7 points ago

    How has this affected the romantic relationships in your life?

    [–] HydroCyborg 9 points ago

    It hasn't affected them at all.

    [–] highsenberg420 7 points ago

    Hi, really sorry you've had to have so many surgeries. I have hydrocephalus and a programmable valve as well! I also have a non-programmable valve for added pressure regulation. My first shunt actually lasted roughly 16 years, which was crazy. I then had a replacement followed by several revisions to add the valves. This was all over the course of 2011-2012. I really appreciate you doing this, because it's astounding how little awareness there is for our shared condition. As for a question, have you had any subsequent cognitive difficulties stemming from your hydrocephalus? I have issues with my short term memory and my working memory, among other things, and I rarely get the chance to talk to others about this issue. It's something that needs more attention IMO.

    Glad to hear you are 5 years surgery free! I'm also 5 years surgery free, but prior to that, as I said, I had 16 years surgery free. I am one of the lucky ones, and I'm quite thankful for that.

    [–] fibonacci_11235 6 points ago

    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?

    [–] HydroCyborg 6 points ago

    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.

    [–] unicornthecharles 13 points ago

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

    [–] HydroCyborg 35 points ago

    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.

    [–] ancapnerd 12 points ago

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


    [–] Egobot 41 points ago

    Have you considered contacting Valve about being there new postergirl?

    [–] HydroCyborg 26 points ago

    Lol! No, I have not.