Headway

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...

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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?

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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

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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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Hi Pip! Welcome! I had a shunt fitted aged 50. It’s working well. I also have frontal lobe damage and “Executive Dysfunction “! Yes life has completely changed particularly as my partner abandoned me shortly after surgery! Slowly getting used to life now though. Just have to accept my limitations. Frustrating as I went from an active life of snowboarding, motorbikes etc. I can’t even look up to change a lightbulb now because of my balance

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Life certainly changes! I think adaptation is the key word... Having a good day today all down to finally getting confirmation of my ill health pension sums feel I can now get on with my 'new' life cos I can afford it! Kate 😀

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Hi Pip, nice to meet you, my story is pretty similar. Im also 47. In 2013 i had a tbi resulting in hydrocephalus requiring a vp shunt, on third one since then, had lots of pressure problems, have had encephalitis from the second op. Not been working since 2013. Same need help and got s lovely neuro surgeon who goes above and beyond but ive had constant headaches and migraines since it all happened. I find the pain the worst symptom. This site has been great for helping me realise my symptoms are unusual that they are normal for brain injury and Hydrocephalus. Im so glad I joined this week. Xxx

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Hi Lisa, my name is Kate(pip is my login!) It's surprising how similar the results of brain injury are whatever the primary cause! The more stories I read on this site the more I know is that we all have one in common thing and it is a damaged brain and we all seem to be determined not to let it define us and just get on with the resulting disabilities! Keep smiling Kate 😀

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Hi Kate, thanks for getting in touch. I totally agree, until I joined this week i literally felt like I was the only person with brain injury I know, now I feel part of a group and to be able to share each others stories and support each other us fantastic. I finally feel Ive met people who share the same symptoms and also the same challenges. Im getting lots of great advice. Nice to meet you. Xx

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