Hi,

I'm just posting this because it REALLY annoyes me. I've got hydrocephalus, spent most of my life in and out of hospital, had about 36 replacements and have still managed to gain a decent honors degree in IT and am about to do my post-grad...

now, enough about me, but what is getting my goat is ignorant people....I've been called "weird", "strange"; "idiotic" and get dismissed having nothing wrong with me, on a few occasions because of my memory, some times my speech and some randomness which is certainly associated with the condition.

I always mention to them that I, like many others are literally "hanging by a thread"...well slightly thicker, and that without that tubing, I would probably die or spend the rest of my short life virtually as a vegetable (as I am one of those who ALWAYS blocks, and my ICP build-up is suprisingly rapid....and nope, an ETV is out of the question cus of my slit ventricles)....it REALLY, really upsets me...does anyone else here have the same problem, ok, thanks to medical science I AM alive, but also thanks to medical science I get lot of disability discrimination

I sometimes get annoyed by my local charity as well, taking it for granted that Hydrocephalus MUST accompany Spina Bifida and that on it's own it's nothing really as it's "hidden"...I have nothing against people with Spina Bifida, but I've fundraised for them and random people have come up nd said "why doesnt Hydro have it's own charity, this stuff's just for spina bifida"...you see what I mean?.

Sorry just venting my spleen, but it REALLY iritates me!!.

Daz

I think you'll find you're in good company, unfortunately. Thank God, I don't have a lot of problems with hydro, but I hear you about the "Well, you obviously don't have spina bifida, so what are you b!tching about?" People are utterly clueless, including doctors. Comments like this get a story from me about one of my best friends who died after more than 100 surgeries for hydro. She didn't have SB, but hydro complicated her life and may have been partly responsible for her death at 34 yo.

I challenge HA and other hydro groups to do something about this. Let this be the decade that hydro "comes out of the closet" and becomes better-known to ordinary people.

((((((((((((((((HUGS)))))))))))))))))) to you, too!

LIZARD

I usually say "Hydrocephalus and Spina Bifida are related conditions, one concerns the back, and the other the brain...which sounds worse to you then?"...that usually shuts em up, but yes, I've just come back from india where they confuse Hydrocephalus with Cerebral Malaria all the time, with very deadly consequences, it truely CAN be a horrific condition, but paradoxically, thanks and because of people like Holt, Dahl and the medical world it becomes easier to dismiss.

it's irritating....ho-hum, nevermind

My Aunt who think I am either incompetent or a total moron who has a brain that functions at a two year old's level. (I really don't want to go into detail about this. Most of you probably know it anyway!)

PS. The new icons are cool.

the lack of understanding and knowledge....

all we can do is help educate.

psst....h0ckeyed....welcome to NeuroTalk.

cheers

Thanks, I just felt like getting that one off my chest.

Although I think I need to educate my doctor to the difference between sinus problems and shunt malfunctions.

like when i had a pimple and my dr wanted to test it for staph.

on an encouraging note...for the heck of it i asked my 12 year old daughter if she knew what hydro was. she did. she has had kids in her classes with hydro.

Yep, the integration these days in schools is incredible. When you consider that I'm 25 and they wanted to send me to a specialised school for disabled children.

Glad they didn't.

quick question though, has anyone here had a bore hole or a false fontinal fitted?, both to assist my many shunts but slightly unsual....has anyone heard of them.

I was never in anything but regular ed because my parents never said a word about my hydro to anyone, even to me, most of the time. I grew up knowing almost nothing, and when I had emergency shunt surgery at 13--over 26 years ago--I had no clue what I was in for. Living with hydro in the Dark Ages really sucked.


LIZARD, so glad kids can get the help they need now