hydrocephalus

[versa2508]

Hi folks , I am 42 and have battled hydrocephalus since age 20.This was caused by a presumed tectal plate tumor of some kind.after a period of battling bad headaches and vision issues etc.Been through a 3rd ventriculostomy which controlled things for a few years.This eventually failed and had a vp shunt fitted.This has failed umpteen times and had to be redone.Be good to chat with anyone who's been through a similar experience.Or just anyone with some helpful info etc.cheers.

[cat3]

I've no experience of what you're going through m'love but just wanted to say sorry that things are so tough for you. I really hope there's more effective treatment out there and that it heads your way sometime soon....

All best wishes, Cat x

[cat3 in reply to cat3]

ps.. maybe try the Headway helpline for advice and support ?

It's freephone 0808 800 2244 😐 x

[versa2508 in reply to cat3]

Thank you X

[lcd8]

Hey there. Not quite the same but I've had hydro since I was 12 and a VP Shunt since 14. I'm 49 now. Mine was caused by something called an AVM affecting the CSF drainage routes. Thankfully the AVM has not bled so far. But I'm on Shunt number 4. I was once told they normally have a lifespan of 10-12 years but of course they can fail at any time.

Lulu x

[versa2508 in reply to lcd8]

I take it yours is not caused by any growth or any sort acting like a plug ? I had a 3rd ventriculostomy first at 20 and that worked OK for a number of years.around mid 20s before I got the vp shunt.it failed within 6 months a coupla times, then a year,then 2 year,then I got 4 or 5 year.been redone 2017 then end of 2021 and end of 2022.So not been lucky.Id hoped it would work OK for life when I got it.10-12 years would be manageable.How often have you had to have it redone and what's gone wrong when it failed ? How do you feel in general just day to day are you living a normal life ?

[lcd8 in reply to versa2508]

My AVM is the sort of plug I think you're referring to. My first Shunt needed replacing after 3 or 4 years. After that my revisions were less frequent fortunately. My current Shunt was placed in 2007 so doing very well. In general I feel perfectly well now. I work, eat, exercise, drive and enjoy life the same as everyone. When the Shunt needs replacing I get the same symptoms I had between ages 12 and 14 - chronic headaches and sickness. I really feel very unwell and after a couple of days I know this is the issue. Then I go straight to the hospital for a CT or MRI scan. Normally hospital admittance is quite rapid.

[versa2508 in reply to lcd8]

Sounds like you are doing OK.Ive been through umpteen operations now and think that alone has took its toll.

[lcd8 in reply to versa2508]

Yes I can imagine. Its never easy so I have the deepest sympathies.

[versa2508 in reply to lcd8]

What does AVM stand for ?

[lcd8 in reply to versa2508]

Sorry, It stands for Arteriovenous Malformation. Its basically a lesion in which arteries and veins are connected in an unnatural way.