HYDROCEPHALUS

[martinbradley]

3 WEEKS AFTER V P SHUNT STILL GETTING BAD HEAD ACES, AND STOMACH PAINS, IS THAT NORMAL. ALSO FELL VERY TIRED ALL DAY CAN ANYONE ADVISE

[spider555]

Early days?

But ask your GP if you're concerned

[lcd8]

Hi Martin. Personally my symptoms were immediately relieved when my Shunt was fitted. The first time however I was warned to lie flat for a few days after the op to prevent the CSF draining away too quickly. If you're worried I would definitely seek medical attention as still getting headaches weeks later sounds a bit strange. Its probably not beyond the realms of possibility that the Shunt has already blocked. I suspect you'll need a CT scan to ascertain what's going on.

[martinbradley in reply to lcd8]

SORRY FOR GETTING BACK SO LATE,HEADACHES ARE STILL THERE BUT NOT AS BAD had my six month check up they say it is normal to have some head aches,and memory my not be as good, but my walk is back to normal which was my main worry fingers crossed things keep improving.

[Pip70]

Hi Martin how great to have some one else who has recently had a vp shunt I had mine put in July (strata valve) at the age of 47. I have had some headaches but manageable with paracetamol but the main symptom of my hydrocephalus has always been my lack of balance when mobilising which has improved! My Neurosurgeon is still adjusting my settings approx 6 weekly as the fluid still builds up! Tiredness is a major issue but I feel it has improved since the shunt. What is your story? Kate😀

[martinbradley in reply to Pip70]

Thanks for getting in touch, sorry for not getting back in touch earlier I started to feel if i was walking strangely, as if i was falling down a steep bank ,or my feet wouldn't move when walking.Also suffer from a bad memory for years,and became a bit incontinent ie couldn't get to the loo in time for a wee.have had vp shunt in for about 6 months,walking is back to normal but i still feel very low,thought i would feel happier than i am. Martin

[atruswel in reply to martinbradley]

Hi Martin....I too had a Strata valve shunt - fitted in Feb 2017. My story is following balance issues and few people suggesting I walked differently I visited my GP. Following further tests I was diagnosed with normal pressure hydrocephalus and soon after sent to bham to have a shunt fitted. The worst part for me was having a lumbar puncture prior to surgery. The headaches and sickness I felt afterwards were almost unbearable. Recovery after the shunt was fitted was about 6 weeks the most major factor was tiredness and no energy to even get dressed in a morning. This gradually eased and my energy levels have come back. I am back at work but still experience some headaches and difficulty with balance/walking oh and getting to the toilet on time! PS Age 46 when I had my shunt fitted.

[martinbradley in reply to atruswel]

Thanks for the information one question how old are you.I read NPH affects people of a older age, i am 54 years old and feel this is young to have these problems. I also still feel very tired all the time,and feel my memory is still very poor 10 months after shunt fitted

[darrentruswell in reply to martinbradley]

Hi Martin I was 46 when I had my shunt fitted and now 47. I still feel my memory not great and neither is my balance! (I was told that the shunt was fitted to prevent my symptoms from getting worse and would not be cured) I do get very tired but generally coping with it.

[martinbradley in reply to Pip70]

haven't been on this site for quite a wile hope every one had a great christmas/ new year learning to live with my vp shunt.Still seem to get very tired,feel as i could sleep all day memory still not great,have been for memory tests,waiting for results.How are you coping Kate

[shaunmcg]

Get yourself checked out. I had a prostrate infection after my shunt fitted in 2016 but it wasn’t picked up so got progressively worse 😩 the shunt is an amazing piece of equipment but will never function like your body did naturally. I still have balance issues. Also be patient. The stomach wound takes time. I wasn’t prepared for feeling like I’d been hit by a van! Doesn’t think of how the tubing actually gets to the stomach to drain!

[martinbradley in reply to shaunmcg]

Sorry for not getting back earlier,i feel a bit better yes i agree the shunt is amazing,the only problems i seem to be getting at the moment is tiredness and poor short term memory, as you had yours fitted in 2016 did your tiredness or memory get any better

[shaunmcg]

Sorry I missed this. Unfortunately I also have frontal lobe damage as well as Hydrocephalus so I still get fatigued and have a poor memory. Maybe one day it will improve?

[Pip70]

Hi Martin, not been on here recently either! Having a shunt for me has stopped the rot somewhat but not been the success my neuro god hoped for... I can still walk but my balance is now to pre shunt despite numerous adjustments the hydro still persists and I use a wheelchair out of the house😢.

Life is not so bad though and I find myself singing ‘This is me...’

Take care Kate😀

[martinbradley in reply to Pip70]

Sorry to hear things aren't great,not sure if i have already asked but what caused your NHP,and how long do you feel you had hydrocephalus, as mine, i am no wiser how long it has been there and also not sure what the future holds,so far i feel fine bar the memory problems,and over sleeping.stay strong.

[Pip70]

Hello again mine is congenital I have aquaductal stenosis(simply put a dodgy drainage valve) and up until my teenage years I had no symptoms so was blissfully unaware! It was discovered after a bump to the head and unexplained memory loss/seizures. I was a ‘medical miracle’ as I was physically and educationally normal so a watch and wait approach was taken.

I have led a relatively normal and independent life up apart from the odd seizure up until the last five years or so when my mobility deteriorated and neurosurgery became my only option. I had initial success from each stage of treatment starting endoscopically then on to shunt. I had haematomas on the way so it’s now to risky for more neurosurgical intervention cos I could end up with a major stroke so not worth it given the stubborn nature of my hydro!

So have learnt to live with the ‘new me’ and try to make the best of it and be thankful for the living I did in my early years! I am in the process of getting my ill health pension reassessed for the higher rate as my working life is over(was a qualified nurse!). Keep smiling Kate 😀sorry for waffle!