You're in the right place. There are variety of ages on here and people from all walks of life, with varying degrees of hydrocephalus. I personally don't know anything about a missing cerebellum and it's connection (if there is one ) to hydrocephalus. But, I know of thing or two about the illness itself, since I lived with it for 20 of my 21 years. Of course you're scared and have every right be, this illness can be very serious. Some people have it to the degree where they can't function. All of the people on here have varying and some are worse than others. I personally don't know exactly how bad mine is. However, from what I've read on here it's not that bad. It is a life long condition and I'm not going to lie, surgery is the best and pretty much only option in a large number of cases. There is a small percentage who are a candidate for medication, because they're not that relible. However, shunting and similar procedures are the best options. They remove the CSF from the skull and allow the body to process it the way it would food, in most cases because it drains into the stomach. That's how mine and number of peoples' works. I haven't heard of a case on here that has it other wise, because that's the most common path. I hope everything goes well for you and your family, and if you need any more information I'm on here daily as a number of other people.
Discussion Topic
Hydrocephalus and missing cerebellum
Posted on 05/16/08, 05:40 am
Hi to everyone, I'm new here and not sure if i have come to the right place but my unborn baby is missing his cerebellum and has hydrocephalus. Doctors tell me the out look is poor, does anyone have any advice or similar situation as we are extremely scared of what lies ahead.
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Reply #1 05/17/08 8:46pm
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Reply #2 05/18/08 12:37am
thankyou for your words of support and information. x -
Reply #3 05/19/08 10:10am
don't listen to doctors when they say that. My name is Kimi and ive had hydro since birth. they didn't think i would make it either. and look! im 17 and i want to be an advocate for people with hydro. so don't take everything that doctors say to heart. shoot! i had to get a new NS because i decided to listen to my other NS. if you need support... im here. -
Reply #4 05/19/08 10:15am
Thanks for your support.It's good to know that there are people behind me in our decision to carry on. I am just so worried as his cerebellum has not formed.I no that without this you probably cannot live.I just keep hoping it will appear at the next scan but they say if it has not formed now it never will. x -
Reply #5 05/19/08 10:54am
But, there is always a chance. Patients surprize doctors daily with what they can do. My doctors didn't expect me to live through the night because I was 1lb 7ozs. I'm still here, that it's probably the cause of my hydro. But, it doesn't bother me because I'm doing everything I want to in life. At a slower pace than some at times. But, I'm still doing it. I say Kimi is right on a lot of things because it's the truth, and I give credit where credit is due. Doctors know what medical literature tells them is true. Unless they've experienced something themselves they really have no idea, what it feels like or what the outcome is. Because everyone is an individual and no two people functions the same as you may have already on here. We all have hydrocephalus and I'll say all have shunts. But, our bodies process the CSF differently, in the sense that some of have had more complications than others. At the end of the day we're still fighting this battle and winning. So what we get aches and pains and feel like utter crap sometimes, so does everyone else. We just get throught it. I still get up every morning when I have school and go. I've barely taken anytime off since I started in 2005, and everyday except two was because of a family issue. One day I really felt, sick and one day I played hooky from a two hour class. Big deal, I still passed them both. I'm even working part-time with autistic children, and I love my job. I just didn't just a call today but, I would be working if I had. What I'm trying to say is life goes on with hydro, just in a different way at times. I haven't been on here that long; but, the stories I've heard and told, and the friends I've made are people who that I probably always be friends with even if it's just online. We are your online support people and we don't have to know you to tell a story or give advise. We are just people who care. -
Reply #6 05/19/08 11:18am
Thankyou again, when I read stories like your i feel there is hope but i'm constantly told by dr's that a baby cannot survive without a cerebellum and if he does make it to birth he may live a few hours and will be severley handicapped mentally and physically.x
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