Hydrocephalus

[Hada88]

I’m a 29 year old female who was diagnosed with hydro 9 months ago. I’ve had 4 operations since due to blockage and the need for extra tubing etc. I feel like my life has been turned upside down and struggle to come to terms with it all some days. I’m not working currently as I’m still recovering from my last op and my vision isn’t good due to nerve damage. Has anyone got any positive stories or comments to help me as I feel like I’m the only one going through this! X

[Matt2584]

Hi Hada,

You aren’t the only one.

In 1996 I was diagnosed with a brain tumour and the tumour was/is located on the brain stem and is blocking the flow of CSF AKA hydrocephalus.

I had a shunt installed and after complications with the tumour I have got to keep the shunt in at all times.

My shunt worked brilliantly up until 2005 where I had to have some other operation (that was not related to my head) and the utterly stupid, so called “professional” somehow managed to dislodge my excellent shunt. So I then had to have a replacement shunt and further problems arose. A further op in 2006, 2008 and 2 in 2010 all on the shunt.

A lot of people might not agree with me here but I do believe that our diets play a massive role in a person’s health. When I was little I had a terrible junk food diet, pure sugar and at a young age I had my neurological problems.

While growing up I slowly came away from the sugar-filled diet and started to eat better and was starting to feel better for it too.

Now, I am eating much much more fruit and veg and am feeling loads better and have not been in hospital for operations for about 8 years now and I plan to never go to hospital again.

[Hada88 in reply to Matt2584]

Thank you for your response, this is very interesting.

[lcd8]

Hi Hada. I am 45, suffer from recurrent hydrocephalus and have a VP Shunt. In my case the build-up of CSF is caused by a mass (an AVM) blocking its normal escape route from my head. The pressure caused me to have massive headaches with vomiting between the ages of 12 and 14. At 14 I had a CT scan and the issue was discovered. I had to wait until 15 years before MRI scans were sufficient to diagnose my AVM. I think that having both conditions I am something of a rarity.

I have been really lucky and my shunt has only blocked 4 times since it was first fitted in 1987. But each time it has needed full replacement. Its scary to think about what would happen if I didn't catch it in time so I try not to. But one thing to note is that medical procedures and technology have moved on incredibly over the years. The shunts they use now are so much more sophisticated than the one I had fitted at first. I am ever hopeful that one day I might be cured.

Best wishes

Lulu

[Hada88 in reply to lcd8]

Thank you lulu, and to you

[lcd8 in reply to Hada88]

No worries. I remember feeling very alone with this, especially in the days before the internet. But please be assured we are with you and wishing you all the best.

[shaunmcg]

Hi Hada

You're not alone!

I was diagnosed with Hydrocrephalus aged 51 after being attacked. I also have frontal lobe brain damage which causes me problems.

It came as a bit of a shock to me but I was lucky my shunt worked perfectly from day one. I had other issues (infections, PTSD., partner dumping me) I've had it almost two years now with no problem.

Hopefully yours will stabilise and you can get on with your life.

x