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    HydroCyborg

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    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 1 points ago in IAmA

    I do not have Normal Pressure Hydrocephalus. That usually affects people over 50 and is acquired. Mine is congenital (born with it) and it's just regular Hydrocephalus.

    I do have a shunt. My first I one was placed when I was 2 months old.

    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 1 points ago in IAmA

    I am so sorry about your mother. It's heartbreaking that so many families have lost loved ones due to Hydrocephalus. Even with as many surgeries as I've had, I know I have it better than many others.

    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 2 points ago in IAmA

    I have not. But I am an active member of a FB hyrdrocephalus group.

    I'm glad there's someone out there doing that though. It sounds like a lot of people really benefit from meeting others with the same condition.

    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 1 points ago in IAmA

    I, personally, don't drink water because I don't like the taste; not for medical reasons. I have been on water restriction in the past though. Here's what it comes down to:

    When your brain is in distress, your body begins to dump sodium to protect it. If your sodium levels get too low, it's life threatening. To combat that, often doctors will prescribe salt pills and limit water intake. However, if your shunt is working fine, your brain isn't in distress and it's a moot point.

    Follow any instructions given to you by your neurosurgeon. If they haven't said anything about water, then keep doing what you're doing.

    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 1 points ago in IAmA

    Those aren't requirements. I don't have either of those. You would never be able to tell just by looking at someone if they have hydrocephalus or not. You probably know at least one person and have no idea.

    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 1 points ago in IAmA

    I do. I have sparred, but it's very difficult and I usually have to cut it short. Basically, my head can take the same impact as anyone else on the left side. On the right side (where the shunt is), the slightest tap in the wrong spot (or for combat, the right spot) can cause an immediate debilitating migraine.

    As a result, I've gotten REALLY good at blocking my head. So much so that I've startled quite a few people who were trying to pat me on the head (something that people tend to do to short people for some reason).

    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 1 points ago in IAmA

    Oh, I didn't mean to imply that it was just a sport. Sorry if it came across that way.

    I don't think not sparring makes an art useless, it's just a matter of how you train. Sparring is great to test how you think on your feet (or on the ground, lol). But it can been just as effective to train muscle memory and "test" it under a high adrenaline situation. That simulates a lot of the effects of sparing. It's a matter of how you can use your art and stay in control in a high stress situation.

    I have a lot of respect for BJJ, it just takes a lot more strength than I'm capable of.

    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 1 points ago in IAmA

    Mostly standing, but there's some grappling. Unlike BJJ, I don't want the fight to get to the ground, but if it ends up there I am prepared. Japanese JJ is a lot of redirection of momentum, joint manipulation, and even massage and pressure points. The goal is to end the fight at any cost and get away, no points or pins or any competitive stuff.

    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 1 points ago in IAmA

    I've needed more surgeries because of shunt failure (blockage, breakage, etc.). If you feel like yourself, there's likely nothing wrong with your shunt. Many people go their entire lives without another surgery.

    I have strabismus (mostly corrected by exercise) in my left eye and I need glasses to drive (20/40 vision) but my vision has been steady for quite a few years.

    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 2 points ago in IAmA

    I'm glad to hear you're doing well! Thanks for sharing your story. I'm pretty scarred up too (head and stomach and a small one on my neck). My neurosurgeon won't even see me unless I have a scan that proves something is wrong, but the scans give a false negative because of Slit Ventricle Syndrome. But I am doing great right now, so hopefully no more surgeries in the future *crosses fingers*

    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 1 points ago in IAmA

    The biggest difference between my childhood and others was the random surgery. I would here "you're too young for all these surgeries" a lot; which is ridiculous.

    The only thing I was not allowed to do was scuba dive and full contact football (although I would still play with my friends occasionally).

    As a parent, it's important to remember that your child is just like everyone else, just with a few extras. Headaches are a normal thing and not always an emergency, same with vomiting when you're sick. The important part is to know your child and know when something is different.

    Good luck to you and your son!

    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 2 points ago in IAmA

    Hydrocephalus does't really impact my daily life.

    I started doing jujitsu to help with my balance and I've stuck with it for 17 years (still doing it). I have also been hula hooping/fire hooping for about 7 years. I have given up on quite a few hobbies but I don't think any of them were because of hydrocephalus.

    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 1 points ago in IAmA

    Don't forget that hospitals always have a Patient Advocate that can help her if you're not around or if you need help navigating the hospital system as well. Don't be afraid to use that resource when in the hospital.

    Best of luck to you and your family.

    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 2 points ago in IAmA

    I had never heard of him before today.

    Jason Voorhes (friday the 13th) had hydrocephalus. That was why he was teased and subsequently died.

    And I always like to point out this subtle reference to hydro in Victor Hugo's Les Miserables.

    Madame Thenardier (about Cosette): "She is a little beggar whom we have taken in through charity; a sort of imbecile child. She must have water on the brain; she has a large head, as you see. "

    [–] IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA! HydroCyborg 2 points ago in IAmA

    Why do you have an adjustable shunt? What is the need of that? Is the fact that it is adjustable the cause of all the surgeries?

    Adjustable shunts are sometimes used to prevent having to have multiple surgeries. I have only had a programmable shunt since 2010. Before that, I had a normal anti-siphoning non-programmable shunt. If you're prone to needing a lot of surgeries (or if you're neurosurgeon feels it's better) they'll put in a programmable so it can be adjusted externally without surgery.

    Typically programmable shunts aren't put in children because the valve can be changed with magnets and children tend to do things like stick fridge magnets to their heads.

    Do you have any intellectual disability?

    I do not, but it's also not uncommon.