Living with brain injury caused by hydrocephalus

Hi new here and to social media! I am a 47 year old woman living with the effects of Congential brain injury due to hydrocephalus, I have led a fairly 'normal life' (apart from the odd seizure) up until the last 12 months approx. Now my life is unrecognisable, I was a busy working mum doing all the normal things that comes with that role. Now I find myself disabled, jobless and housebound under the care of a lovely neurosurgeon who has tried to fix me but the initial success of surgery reverts quickly and I end back at square one.

I would love to chat with anyone with similar stories and share experience as I find myself with a lot of time these days...

3 Replies

  • I’m fairly sure there are many one here with similar stories.

    Is the hydrocephalus recent then or have you had it for a while?

  • Hi unfortunately had it since birth not it was not discovered until I was a teenager in 1980's. The neurologist I had then didn't want to treat it as I was educationally normal and apart from the occasional seizure(first one 1983) had no real problems.

    My real problems of poor gait/balance and now poor memory have developed in the last 18-24 months. So much so that I have had to take enforced medical retirement from my job and my life as an independent woman is a thing of the past! I have had 2 different surgeries and now have a programmable shunt which although I had initial relief I feel still is not quite right as I am still restricted with my mobility.

    Sorry to waffle on but it is dominating my life which is something I always determined not to let happen! Thanks for responding and listening Kate

  • Hi Pip,

    In 1996, when I was 11, I was diagnosed with a brain tumour that was located on my brain stem. Because of the location of the tumour, it was blocking the flow of CerebralSpinal Fluid (CSF) which caused hydrocephalus. I had a shunt installed to drain the fluid.

    Due to complications, the tumour could not be removed but was not fully active either. I've had much more surgery down the line and in 98 was diagnosed with a second tumour that I had radiotherapy on.

    Since 96-2000 I had pretty much been in and out of hospital and school. I was back and fourth like a fiddler's elbow :).

    In 2005 I had surgery on my back, it was a pretty simple operation but this lead to an emergency operation on my shunt as the surgeon "somehow" dislodged my previous shunt.

    So since then I have had problems with my shunt which lead to further surgery.

    I do believe now that a person's diet contributes to their health. When I was you ger, before my BI, my diet was terrible. I had a pure junk food diet and consumed a lot of refined sugar, processed foods and drank a lot of sodas/fizzy drinks. Shortly after is when I had neurological problems and as I grew up and learnt more about natural foods I started to eat more naturally and ditched a lot of the rubbish food and I feel a lot better for it :).

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