Shunt

malcspring

I had a Subarachnoid haemmorage in October 2008 and as such I was fitted with a coil. Everything was going ok until March this year when it was decided that I needed a shunt inserted. That happened about 5-6 weeks ago and I have been recovering ever since. Is there anybody on the forum that has had a shunt fitted who can give any info regarding living with a shunt???

Malc

Katherine Hayward

Hi Malc
I have cerebral palsy and hydrocephalus . I have a VP shunt which goes from my brain to my abdomen. My hydrocephalus and cp were caused when I was born at 29 weeks, one of twins , and I had a grade 4 hemorrhage on both sides of my brain. I have severe eyesight problems and am registered blind. I'm an electric wheelchair user. My story about living with hydrocephalus so far (I'm 31) , is that from birth I was on a ventilator in the special care baby unit at the hospital I was born at in Kingston upon Thames and then at the one I was transferred to on the day I was born to get better care. I was on the ventilator for 2 weeks in total. When I was 2 weeks old, the drs decided to do a CT scan as they were measuring the size of my head and noticed it had grown a lot. That's when they noticed the hemorrhages. They decided to do a very risky surgery (after a lot of blood transfusions) to insert a Rickham reservoir to drain the CSF. I was unwell so that operation was abandoned. Then they inserted a VP shunt on the right side of my brain. Over the years I've had 4 shunt operations due to my symptoms of sickness, dizziness and headaches. The latest shunt I have is a VP shunt on the left side of my brain which I've had for 20 years without malfunction/fracture. I still have the shunt on the right side, but it doesn't work. It was thought that the drs didn't want me to have more surgery as a shunt operation is major surgery and I had recovery problems.
I have a lot of headaches still especially when the weather changes and is humid and cloudy. I used to have them in the sun too, but don't get them often in that case. I hydrate myself and drink lots of water. I don't drink much alcohol as I don't like it much and I take medication so don't want it to react. When I do, I alternate alcohol with a glass of water or a soft drink.
I sometimes get odd pains in my neck and head where my shunt is, and when I was 11 I had an Intracranial Pressure Monitor (ICP) operation . The monitor was inside my head for 24 hours, and then it was taken out. They didn't see a dramatic increase in my brain pressure .
I have to use a viscoelastic pillow when I sleep so that it's comfy for my head, as incorrect posture can give me headaches too. That seems to work. I don't have much more advice other than keep hydrated in hot or humid weather (and generally) , the pillow, and keep in touch with a neurologist if you can.
I've got help from Shine
Charity
(formerly ASBAH) http://www.shinecharity.org.uk/ and
https://en-gb.facebook.com/shinecharityuk.
I'd suggest getting a shunt alert card (free through their site) and getting a subscription to their Together magazine if you're interested. They do alot of fundraising events and invite people to do their own.
Their workshop weekends at different UK hotels are also fun. I went to one at the Jury's Inn hotel , Birmingham which was really fun and informative.
Hope the advice I've given helps
Katherine