Hydrocephalus

Hello everyone !

I have hydrocephalus following a SAH 3 months ago. I was hospitalised for it last week. I saw my neurosurgeon a couple of days ago. He thinks I'm going to need a VP shunt.

Is there anybody on the forum who lives with a shunt? What kind of issues do you have with it? Is it a big operation?

Your thoughts and shunty words of wisdom would be much appreciated....

Hope you have a nice Christmas!

7 Replies

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  • I have a shunt and I am so much better. What the medical team can do these days is fascinating and it's helping a lot of people lead a normal life. It is a big operation but they have probably done this many times. It helps regulate the fluid in the brain.

    You will need a few months to recover but I am 18months on and feel very normal.

    I hope this helps. I have done videos to help other people that have been through something Similar, please watch and share :

  • Hi I had a shunt in 2010. I have had few if any problems with it. There are no signs of it other than the scars.

    Initially I felt if I stood up the fluid would drain do quickly and I slept with my head higher to ensure I didn't get a headache but I have learnt that these types of things are just nonsense.

    The shunt really just lets me get along with life as normal.

    (Travel insurance costs more though)

  • I too have a VP shunt (fitted in May 2015). Since having it fitted my headaches are much more bearable. I haven't had any issues so far. Be prepared for a fairly large abdominal scar. I also have a lump on my skull and an indentation where the valve is. A big operation but really improved my quality of life. Good luck!

  • Hi. I had a VP shunt fitted in AUgust. It changed my life (for the better!) I still have issues and am not fully recovered yet but it should make a huge positive difference to your life

  • Hi,

    I have got a VP shunt and most of the time I don't have many issues with the shunt itself. It just feels like a big, bulky vein underneath the skin.

    Sometimes I do get days where the muscle/s around the shunt tube feels a bit sensetive/sore but it isn't a lot to worry about. It's what I would call "shunt ache" where the shunt tube is riding against the muscle but there is not much you can do about that.

    I have had to have further operations on my shunt in the past as it has blocked up or malfunctioned. The reason for blocking is likely because of toxins we have picked up in some of our foods. Look at the bodies' PH regulatory system for more info biomedx.com/microscopes/rri...

    I used to have a horrible junk food diet, lots of sugar which leads to an acidic body which people really shouldn't have as viruses and diseases can thrive in an acidic environment. Anyhow, around the time of my acidic body is when I had health problems including the BI.

    Later in life I have weaned myself from an acidic diet and eat more alkaline, natural foods now and have not had many health problems at all and have also not had any further ops on my shunt since 2010.

    I don't eat totally organic, I do still eat acidic foods but if we lived in an ideal world, I would be eating organically all the time, actually I think most of us would.

    I don't think the op to have the shunt installed was a big operarion at all, not compared to the following operation I had which was to have a brain tumour removed which went sour in the end :(.

    It was 1996 when I had my shunt put in and brain tumour operated on and I was told that I had a blockage of fluid in my head which was the reason for the shunt. I wasn't told that it was called Hydrocephalus. It must have been around 2005/06 when I myself was looking for information on brain tumours and shunts on the internet when I found the word 'Hydrocephalus' and the description sounded a lot like what I had had.

    I found out more about hydrocephalus from my Headway in 2014/15. I was speaking to someone on here once and they told me that doctors back in the 90s did not have an official name for water on the brain which would have explained why I had never heard of the word.

    Also, another person I know at Headway has a shunt too and he once told me that his doctor told him to milk/stroke the shunt as it helps keep the fluid flowing.

  • Personally I think I'd be glad to have something that stops all the nasty symptoms of hydrocephalus! Thanks so much for all your input everyone it is much appreciated, and it's always better to hear from somebody who has had the procedure done!

  • Hi Silmarillion. I have a VP Shunt and suffer from recurrent Hydrocephalus. I am now on my 4th Shunt and have lived with one since I was a teenager. In general it doesn't cause me any issue. The operation is short (half an hour or so) and is done under general anesthetic. You end up with a scar. But nowadays there is no stitching involved. My scars are glued or stapled. When my Shunt gets blocked my Hydrocephalus returns and I start getting headaches again. Hope all goes well for you.

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