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    HydroCyborg

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    [–] Rant: Feeling very done with shunt revisions! HydroCyborg 1 points ago in Hydrocephalus

    I think I'd be too afraid to have surgery in most countries. But Germany is not one that I'd be afraid of. I did have to be medivacced out of Mexico though because of a shunt malfunction. It came on fast and was severe (only two months after one of my surgeries).

    Glad to hear your doing well! What subject are you getting your PhD in? I've been thinking of getting a MS in my field (my work will pay for most of it) but I feel like I just don't have the time to devote to it.

    [–] How do you get Life Insurance when you have Hydrocephalus HydroCyborg 1 points ago in Hydrocephalus

    I'm in the US so I don't know how much tgis will help. I get my life insurance and medical insurance through my work. However, I also have hospital insurance through AFLAC. There's a death clause that pays out quite a bit. The price of AFLAC is the same fore everyone. And Hydrocephalus is not considered a "pre-existing condition" on theor policies if you have not had hydro related surgery in over 12 months.

    [–] Rant: Feeling very done with shunt revisions! HydroCyborg 1 points ago * (lasted edited 2 months ago) in Hydrocephalus

    I have SVS as well. I'm only up to 19 surgeries, but I definitely feel for you. Here's a couple possible options to help keep your spirits up while in the hospital:

    • See if you can get your dog certified as a hospital therapy dog. Then your parents or friends might be able to bring him/her into the hospital to visit you.

    • See if you can register your dog as a personal service dog. Then he/she is permitted to be inside the hospital (except in the areas of OR, post op, ICU, etc.). In some places, like where I live, getting this certificate can be extremely easy to obtain.

    If neither of those is an option,

    • See if your doctors/nurses will allow you to sit outside the hospital, but still on premises for a little bit when you're well enough to walk around on your own. Maybe even clamp off your IV for an hour. Since it's not inside, dogs are usually welcome on leashes.

    I had my dog visit me a time or two during long hospital stays using the third method and a friend brought his dog to visit me using the second method.

    Good luck to you. If you ever need someone to talk to, feel free to PM me.

    Edit: Added one option that I had forgotten.

    [–] 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

    You can get a basic anti-siphoning style shunt by buying the boozle Teddy bear from the hydrocephalus association. It comes with a time replica shunt. But I don't know where to buy a real working shunt. If you find out, I'd love to know.

    [–] 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'm so sorry about your sister. I don't know too much about the pineal gland and hydrocephalus, but I do know that brain tumors can be a cause of hydrocephalus. Here's what I was able to find. Another good resource for information about hydrocephalus and its causes is the hydrocephalus association.

    [–] 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

    1. When I google shunt bubble, I only get information about the shunt reservoir (which can be tapped for pressure measurements, but you shouldn't push it in). I don't think this is what you're talking about, is it? I do have the tube over my collar bone that I like to wiggle to freak people out.

    2. No, I've never dealt with that. People at work don't really notice when I bump into walls or doorways. Lol.

    3. Usually when people ask about my scars, I share my story. I figure that it helps being awareness about it.

    [–] 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

    Yeah, I've had about 10 of the full replacements. Recovery is definitely harder. I don't take any pain pills though (at least not after surgery). I find that I heal faster when I can feel what hurts when I move. Lol.

    [–] 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 so sorry about your mother. I too wish hydrocephalus was taken more seriously. I do not know how common heart attacks are, but it could have been related to whatever condition caused her hydrocephalus. Shunt failures, unfortunately, are very common.

    [–] 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

    Stress or not, she should pursue her dreams. If she can't handle it, she'll find something that she can handle, but if she doesn't try, she will likely regret it.

    More surgery is not something everyone has to endure. There are many people in this thread with Hydrocephalus who have only had 1 or 2 surgeries in their entire life.

    [–] 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

    Thank you for your service. I'm sorry you had to endure that.

    I have not checked out the TBI subreddit, but my Hydrocephalus was not caused by an injury, so I'm not sure if it's really the right place for me. Have you checked out the Hydrocephalus subreddit?

    [–] 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 am very sorry you're going through this. I have not had to deal with instability due to surgery. What keeps me going? Knowing that being sad about my situation is not going to make it better. I know that's not a great answer and I know depression is incredibly difficult (worse than brain surgery), but the only thing I can do is remind myself of that and make the most out of a bad situation.

    Good luck with your surgeries. If you need someone to talk to, feel free to PM me.

    [–] 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

    Yes! In fact, I rarely vomit when having a malfunction. The mood changes are gradual and headaches start to become more frequent (even if they are mild). But the real warning sign for me is that I start struggling with basic math (something I'm good at) and I stumble/trip a lot more (usually with my left foot).

    [–] 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

    It's the same as every other pregnancy unless the Hydrocephalus is caused by a genetic issue. Hydrocephalus is caused by many different things, most of which are not genetic. Mine is caused by Dandy-Walker Syndrome; it's unknown whether or not this is genetic.

    [–] 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 sorry you and your son are going through this. I have heard that this can happen idiopathicly, but it's not common (to my knowledge). I do not have any head pain when the shunt is working properly.

    I don't remember what it was like as a baby, but as kid (thru adulthood) I feel like it's harder on my family than it is on me. It's tough to watch a family member go through a medical procedure or be hospitalized and know that you can't do anything to make it better. Just know that a normal life is still possible for your son. Occupational therapy helped me tremendously. And you can find some great resources and support groups through the hydrocephalus association: www.hydroassoc.org

    [–] 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

    Not really. The worst post surgery problem I've had is that surgery takes a lot out of you, so I'm always back to square one with strength training. I have gone from being able to bench 85 lbs and do 5 pullups to not being able to bench the 45 lb bar or even hang from a pull-up bar.

    [–] 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 look out for gradual personality changes and cognitive ability. If you start to get headaches more frequently and need naps more often. When I had a shunt malfunction in college, my professors thought I was on drugs. More importantly, you know what you normally feel like. You'll know when you feel off.

    [–] 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 don't have any MRIs (at least not readily available) but I do have several CT scans. I would have to go digging, but if I can find them I will PM you with the images.

    When functioning normally, there are a few abnormalities with my brain. I have slit ventricle syndrome, likely as a result of repeated surgeries. And I was born with Dandy-Walker Syndrome; the cause of my Hydrocephalus. DWS means there's a cyst on my cerebellum that causes an enlarged 4th ventricle.

    [–] 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

    The worst part is people who can't see a disability assuming you are healthy because of your age. Getting teased by coworkers or other adults because you're an adult that can't ride a bike (for example). Or worse, sitting in an ER for 12 hours because the triage nurse had never heard of hydrocephalus and thinks you just have a headache.

    [–] 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.