Hydrocephalus Support Group

I don't celebrate mine. I have bad memories of that day so even though the date is imbedded in my head i try to let the day pass without a second thought. I am sooooo grateful to it though. Your my inspriration Hydropioneer i hope i get 24 years out of mine! I hated the fact i had to have part of my head shaved!!! how vain is that!

Hi Tuffty,

My story is a little similar to yours. I was 37 years old when my hydro was discovered. I was having ongoing chronic headaches (vice-like pain) and was showing signs of a stroke when I finally had a CT. The doctor was SHOCKED that I could function with that much fluid on/in my brain as my brain was being crushed against my skull.

I orginally had an Endoscopic 3rd Ventriculostomy (ETV) to relieve pressure. Eventually, I twisted my NS arm to place a VP shunt because I wanted "perfection" (relief from vertigo and incontinence). So far, the shunt hasn't been a problem, however, it didn't produce the results I wanted either.

We are glad you joined us here.

~Mary

Thanks mary, its just nice to know that other people have went through and came through the same as myself no one seems to understand it unless you've went through it the either look at you and say well weres your big head then or don't understand it at all! i went for a job a few years back and nearly did not get it because they said i may be a risk, i laughed in there faces and said i have a tube in my head to keep presiure down not a B....y second head, i've had 2 weeks off work due to the shunt surgery in 9 years, i think they may have thought i would be prone to sickness or somethin, i got the job but left to go into to support work, its alot more worth while and feel like i'm giving a little back,x

welcome to the group Tuffty . yes i still have the evidence of "my big head" . My forhead is very high and odd looking . Although i was never shunted it was absorbed .

Hi diane nice to meet you, i've never heared of it being absorbed, what does this entail!!! this the good thing about this site i've found out more about hydro in this past week then i ever have, i went for a check up six months after my operation i was in there 10mins the doctor said no horse riding no kick boxing basically be on your way now lol, they gave me a leaflet which was hopless and told me nothing, i never thought there would be a site like this to chat about things i would have been on alot sooner than 5 years after it happened, i did'nt know the could do anything other than put a shunt in to drain the pressiure,your head looks very normal to me diane quite small accually,some of the children you see with it, the poor things it looks painful to even look at does'nt it

Hi Tuffty,

Quick question: kickboxing I can see - you don't want a kick to the head, but did they say why no horse riding? Surely the risks of falling off a horse and landing on your head is the same as the risk of riding a bike, scooter, roller skates...?

The nearest to limiting my activities my doctor went was saying it was perhaps not the best idea to do kickboxing (where the head is a legitimate target), or rugby. (American football or ice hockey wasn't necessarily a problem as you wear pretty solid helmets for those )

Don't know, i have thought that since being on here as a girl was talking about horse riding and i thought it was a bit strange my doctor saying that to me and another doctor saying something else to her, i done kick boxing for years and was a first dan black belt never got punched in the head much, as i only went in for semi contact fights, but yes me too i could understand the kick boxing but not the horse riding,i'll have to look into it because i do feel like i'm missing out