IAmA 16-year-old girl who has metres of plastic tubing inside my body to stop my head exploding.

Can you feel the tube?

Yep. It's about a finger's width across at its thickest point (at the back of my skull). When I was little I used to get really freaked out by it, but now it just feels natural, like an over-sized tendon or something. I can also feel it in my neck and chest. I generally hate scarves/turtleneck jumpers because they push against the tubing and make it sore. But in answer to your question, yes I can feel most of it.

Would you like me to knit you a scarf that won't bother you?

I'm not sure...as a general rule I don't like them. But thanks for the thought :)

You are very lucky to survive. My baby sister developed the same problem (due to a different reason though) and went through the same procedure, but unfortunately could not make it through. Glad to see someone alive with the same thing....

My thoughts are with you and your sister :( I guess I need to be thankful that I survived. I know it's relatively common, but not everybody makes it through, and I need to remember that.

Same with me. I was born with hydro and had a shunt put in pretty much right away. Went 18 years without a problem and then my tubing broke in my neck and had an ETV done (basically laser a hole between 3rd and 4th ventricle to allow drainage). And I've now been shunt free (still there but not working) for 4 years.

Definitely take it for granted especially hearing/seeing people who have had surgeries into the 100s before they're even 18, and not being able to live normal lives

Now I'm scared I'm going to have to have another operation! D: But seriously, I'm so glad I haven't had to have loads of surgeries. This is a quote from my mum, who I've been speaking to for some answers to this AMA:

'Some of the kids on the ICU ward broke my heart. You'd have 5-year-olds who had to go into surgery for the 10th, 20th, maybe even 30th time. I was so scared you'd have to go through that'

I guess I really am lucky.

My son has Hydrocephalus since birth. He's only 5 now, but Im curious how things are going to be for him once he's more your age. So I suppose my questions are:

• How many revisions have you had?
• What sort of sports, if any, are you restricted from?
• How's your social life? Do your friends know about this?
• How's school? Has this caused any issues with your studies?
• Has Hydrocephalus caused any other disabilities for you?
• What other challenges has it caused you in life?
• have you heard about the Hydrocephalus Association?

1) I've actually had no revisions at all, but don't be surprised if your son needs them. From what I can tell, they're fairly common.

2) I'm restricted from doing boxing (which I don't want to do), rugby (which I want to try, so that's annoying) and skydiving (which I'm not keen on either). Diving may be a no-no, I'm not sure yet. But if you're worried about your son, I can tell you from experience that regular swimming, football, hockey, running, and basketball are all good :)

3) My social life's pretty rubbish, but I suspect that's because I'm an introvert. I have a group of really close friends who all know about it, and they're totally cool with it. They didn't even notice til I told them.

4) I haven't had any issues with my studies at all. I was supposed to be lucky if I could learn to walk and talk after the op, but as you can see, I did. I'm above average in all my studies, and I'm applying to be a vet next year. So all in all, I can say my schoolwork hasn't been affected that much.

5) My coordination's a bit pants, but I have a feeling I'm just clumsy.

6) it was a constant embarrassment when I was little having to tell teachers. This was in case I got an infection, and passed out at school or something. But since I've been at high school, there've been no problems.

7) I haven't, but I promise to check it out. Sorry for the late reply - I've been swamped with messages! D:

Do you have any proof of the actual tubing or surgery?

As for the surgery, no. I'll see if I can find some baby photos though - you can see it way clearer on them. However, seeing as the biggest part of the tubing is at the back of my head, covered by a stupid amount of hair, it's quite hard to see on any photos. It's times like this that I wish the internet was a physical thing. People usually only notice when I guide their hands on my head! (By the way, I don't just go round making people touch my head. It's usually people who are just curious/want proof that I actually have plastic in my brain)

I'm sorry for this but i cant resist.. How can you not have proof of surgery? Do you have scars? A wristband? Medical documents? Insurance(without personal info)? Pictures of you in the hospital with balloons around?

Why dont you take a picture?

EDIT: I'm not calling sick little girls liars. I just figure this should be something that is easily proved and we still hadn't seen "proof". Déjà vu.

I'm going through the family albums now, and I've found a photo of me a few weeks after surgery? I'm still bald from the operation, and you can see the shunt on my head. I'm uploading it now, and I'll post it soon :)

Have you ever had a close call?

Never! I'm super-lucky!

You kinda look like Lady Arya Stark.

Why thank you! I really don't - Arya's much prettier, and besides, she knows how to sword fight!

Also Arya is supposed to be 9-11 throughout the series, you don't look 11

That's what I was thinking...I'd rather not look like an 11-year-old!

Have you developed any super powers as a result?

Sadly not, but I think I'm lucky not to be at any disadvantage in terms of cognitive ability. I'm a straight-A student, I'm highly articulate, and I have next to no problems with coordination. Seeing as doctors were worried as to whether I would develop the ability to walk and talk, I consider this a kind of super power?

I suppose that's all a good bonus, but it would be cool if you could move things with your mind. Or explode things. That might develop later in life though.

Yes, it would be awesome to have super powers. Alas, it hasn't happened to me yet. There's still time...

Maybe if you get a valve, you could shut it and use your expanding head to lift huge debris in collapsed houses etc.?

We must think of a name for you...

Yes! I get to be a superhero!

I suggest placing yourself in unsafe proximity to a source of gamma radiation, or something similar.

Sounds like a fab idea. Off to the physics lab I go...

Hello, fellow shunt-haver! Mine was put in for the same reason as yours, at age 18 months in 1979. There was some worry about it not working properly in 1993, but the problem resolved itself and thankfully I've never needed a revision. I see a neurosurgeon for a checkup every five years, and get an MRI every ten years, like so - http://imgur.com/gyJN1.

high 5's the fellow cyborg I'm glad you're well, and that nothing was wrong.

How come you still need the shunt installed? I would've thought that once the meningitis had cleared up, and the fluid on the brain had been removed, you wouldn't need the shunt.

There's obviously a lot less fluid there than when I was ill, but it seems my body's 'adapted' to having a bit of water swimming around it. So it continues to go up there, and having to be drained back down. Stupid brain!

By the way, you were kind of right. Some people only need temporary drains. However, because I was really sick, and quite young, they decided to be safe and stick a tube inside me.

So it continues to go up there, and having to be drained back down. Stupid brain!

BRAIN. WUT R U DOIN.

BRAIN.

STAHP.

This made me giggle xD

Yay! Another child with hydrocephalus! You're not alone, I'm 19, I've been through 13 brain surgeries, the most recent being when i was 14. I have a cerebral shunt that is controlled by magnets so they can adjust the speed of drainage as needed. I was the first kid at Riley Hospital to have this done. When i was 13 i was told i would be lucky to make it to 18 but here i am, computer tech and avid skateboarder. Don't let the condition hold you back, i was always afraid of being different. If treated correctly there's no difference between us and the shunt-less. (Now try telling health insurance that...)

I'm in the UK, so no health insurance policies for me! I imagine it'd be hell though. It sucks that you've had to have so many surgeries, but it's really good you're well now. Keep on being awesome!

Read this post as "I am a 16 year old girl with meters of pubic hair." I am a bad person

Well done xD Although that did make me giggle.

1. As you grew, did you have to have the tubing extended?

   • If so, did they just attach new tubing to the bottom and then attach it back into your stomach?

   • If not, did the surgeons just put a long tube in and hope that you would only reach a certain height?

2. Do you get dizzy quickly, feel nauseous, or feel a stinging sensation if you're laying down or are inverted(handstand)?

3. Has the tube ever been damaged by any trauma or anything?

1) Nope - the doctors put loads of tubing in me, and sort of hoped I wouldn't grow past 5'6 xD

2) I get a kind of pressure feeling on my head, but I thought that was normal? I'm scared now!

3) Not that I know of. There's some speculation that it might have cracked when I was 10, but I'm not dead yet, so I'm assuming it's ok.

OP: No question, just want to say thank you for sharing your story with us and also, the 16 year-old me of many many years ago is envious of your excellent writing skills. Judging from what you've written, you are an excellent writer with a clear and concise voice. Kudos!

Thanks very much! I just try and write what I think, that's all.

Obviously the plastic tube is not going to grow with your body. Did they just provide you with a bunch of extra slack to account for your growth? Do you go in for routine followups to see if the shunt is intact / not kinked up?

They put in a bunch of extra tubing with it. I can imagine quite a lot of my weight was made up of plastic for the first couple of years of my life. I'm quite short, so the tubes didn't have to be replaced as I grew. I used to go in for checkups all the time in primary school, but since starting high school I've only had 2 in 6 years. I suppose they were just worried at first, they didn't know how things were going to turn out as I grew.

Where was the tube placed?

It was put into a ventricle in my brain. It's technically a 'catheter', e.i, a tube that drains fluid. The catheter was shoved into the back of my brain via a small hole in my skull. It then snakes its way to my stomach, which has another hole in it, for the other end of the catheter. That way, if any more fluid gets built up in my brain, it opens a valve that makes the fluid go to my stomach.

Is the valve 100% effective, or is there a small risk that bacteria could travel up from your stomach into your brain?

There's a small risk that could happen, but it seems I'm one of the lucky ones. Infections are quite common, as you can imagine, but I've been ok so far!

Has the tube ever been damaged or injured? Is it vulnerable to the same sorts of injuries as the rest of your body, or do they have it run through the center of your torso so that it's protected by the same stuff as the rest of your vital organs? How would you know if it were damaged? Like, would you be able to feel pain indicating that the tube is what's wrong, or would you just realize that there's something wrong with you and go to the hospital to get it looked at?

As an aside, I hope you don't mind me saying this, but as a 15-year-old guy, you're pretty cute.

1) I'm really lucky, my shunt has never actually been damaged at all since it was put in.

2) I imagine it could crack or get stretched too much if I put it through a lot of stress. On the other hand, it's been in my body so long that my neurologist thinks my muscles/tissue has actually grown around it. So I'm kind of protecting the thing that's keeping my head from exploding :D

3) I think I'd probably get headaches/dizziness, and also serious pain in the parts of the tube i can feel below the skin. My head could also start to swell again if something was wrong, but hopefully that won't happen.

To the aside: Thank you very much :')

Someone may have asked this earlier but I'm just curious, can you ever ride roller coasters?

Yep, I'm totally ok to ride rollercoasters. However, I'm a bit of a wuss...I don't like the stomach-flipping sensation at all, so I avoid them. Medically speaking though, I can ride as many of the damn things as I like :P

I'm curious, how is the tube/catheter secured in your skull and brain? Are there any precautions to avoid any impacts to the region the tube enters your skull?

It's attached to a ventricle in the brain, so it can't move. The hole in the skull is quite small, and in time the bone re-grows around the tubing. So it's fixed in my head, unless the surgeons operate. I should probably take precautions such as avoiding things whacking me on the head, but so far that hasn't happened. I've cracked my skull open due to a collision with a baseball bat, and I've had many footballs to the head. I should probably be more careful.