Hydrocephalus: Does anyone here suffer from this... - Headway

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Hydrocephalus

Shreds
Shreds

Does anyone here suffer from this condition following a TBI and if so, does it affect your everyday life?

22 Replies
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Hi Shreds. According to my discharge notes I had mild hydrocephalus after a bleed on the brain 9 years ago but, once the brain swelling was treated, the issue resolved over a matter of days.

But from posts here, I see that many folk who have their hydrocephalus managed by shunts often suffer from severe fatigue, pain and other issues. Do you have a shunt .....and what symptoms are you troubled by ? x

Shreds
Shreds in reply to cat3

Yes, VP Shunt. I had no idea what one was, not until I came out of hospital and started checking detail out. I had thought the body and brain would just normalise and the fluid would reduce. Now have a permanent shunt....did they ask me.......no.....would I have agreed? .........well I would have needed some strong and persuasive arguements to gain my approval 😉 but that is my naivity and lack of medical training.

I accept it now, but would like to discuss the issues with anyone else in that situation.

cat3
cat3 in reply to Shreds

I hope others will respond tomorrow ; sometimes it can be days before folk look in and read posts. Meanwhile, have you tried the Headway helpline for advice and information on your condition ? They're supportive and reassuring and can help you better understand your issues.

Their number is freephone 0808 800 2244 during office hours. I hope you find the help and support you need Shreds.... Cat x

Woo777
Woo777 in reply to cat3

Hi cat , hi shreds , yes I had it 4 years ago and I had steroids from hell , they were horrible and I would have probably opted for a shunt if I had been given the choice . I’m 90% back to pre brain pop now . Wendy x

I did, around 6 and a half years ago now... I actually had to have a second shunt 'installed' in the end, due to a bit of an infection from the first. It was about a year after the original TBI, but I was still in hospital so they were just like "oh no!" and so took me straight back into theatre... 🤯 My mum and uncle were my support guys for it all, so they all really saw some stuff! 😣❤️

Shreds
Shreds in reply to trimboone

Quick question to yourself and others here.....

Are you aware when the shunt “kicks into action”? Such as after long period of detailed thought processes or if put under pressure mentally or stress in other ways?

trimboone
trimboone in reply to Shreds

I've been told that I don't actually ever use it anymore, but it'll be far too dangerous to try to remove it after all the drama of installing it! I mean, granted, I only have 2/3rds of my brain left, but I've almost relearnt everything I'd lost now, so I'm just going to carry on without any more surgery, as the surgeons think it'll kill me if it's removed now... 😣🤯

Shreds
Shreds in reply to trimboone

I understand the reason for not wanting to remove it as all surgery carries major risks, but I am intrigued that they say you dont use it any more. How do they know and how did you get to a situation of a lack of excess fluid?

trimboone
trimboone in reply to Shreds

I think I will always have some excess fluid inside it. They always mention it when I have a scan, but everyone knows this and it's only a tiny amount these days.

Shreds
Shreds in reply to trimboone

I think I need a desert island to achieve that. I shall start looking 😉

I had a major sub-arrachnid hemmorage back in 2018,I came round with scars of a vp shunt, after my little boy was born extremely early 28+4,who also has a vp shunt I kinda knew what signs I was looking for about malfunction,he had one,had an infection and got a 2nd

I knew there was “adult onset” HydoC as well as for babies, that must have been terrible for you knowing he had to have one too?

Apparently infection or malfunction in the early days is common.

Read that these contraptions have a ‘shelf life’ although my doc said not to be concerned about that given advances in medical science....whatever that meant?

Ten years on and less able to cope with surgery is certainly something I have thought about for the future.

I realize you have concerns/worries about it but believe you'll be ok, myself still being here and my son having one early on, believe things will be ok

There is, of course, a difference between needing a shunt from birth and needing one after trauma, although the principles are, I believe, the same. I have had a VP shunt for all but the first 6 weeks of my 55 years. When it is working properly and I am not bothered by the consequences of when it doesn't, I can honestly say it doesn't crop up in my thoughts, or determine my lifestyle. Of course, when it does throw a wobbler out of the blue, it can be a struggle to get things back on track, but a quick reminder to myself that, without it, I'd not have more than a few weeks of life puts everything into perspective...even when things aren't going to plan.

Hi Shreds, I recently found out I had Hyrdrocephalus (2 years ago) which caused a cyst which became problematic last year and had to be drained surgically. They said everything went to plan but it's only been 4 months since the operation so still early days. My surgeon left a tube linking to the part of my brain that has the excess fluid so they can install a shunt in the future if need be. (I also wasn't told this would happen and found out a few weeks after surgery that I had some new gadgets under my skin!)

I suppose we just have to think of the bigger picture and thank our lucky stars that this kind of technology exists as our lives would undoubtedly be a little shorter without them. I know it's scary at first and especially when things go wrong but I suppose we just have to keep on keeping on! Hopefully you can find some comfort in the excellent support and community here at Headway. :)

Hi Shreds.

I want to address your comment about 'would I have agreed to a shunt?'. I understand where that comes from, I think! I often feel frustrated at having a shunt, its presence and having to think about it at all.

However, if your situation is anything like mine was - the 'choice' was shunt or certain death. In that sense, it is not possible to consent because it's in the patient's best interest to proceed, in an attempt to preserve life and function. In that sense, in my view...I'd rather be alive, so that choice is made for me and I deal with life the best I can.

I have had various shunts from very soon after birth, revisions throughout toddlerhood, early childhood and then in 2019. I have found that I deal with things very differently now than I did as a child, and even 6 or 12 months ago. I bounced back much slower than I did as a small child, I had more deficits. I need to take care of myself more - stay hydrated, fed, get enough rest. Take symptom relief if I need it, look after the scars, keep moving so it doesn't stiffen up. I go to a physiotherapist who is experienced with shunts as I have neck pain from the scar tissue. I am very sensitive to sound so I always have earplugs with me.

I have found that I can't shrug it off anymore like 'ah I have hydrocephalus but it doesn't stop me!' because sometimes it does. Being 'brave' or 'getting on with it' is convenient for other people if it means I don't make a fuss, but it doesn't help me. It's okay to ask for help, to need to rest, to put my needs first.

In terms of the need for revision/the shunt breaking at some point...it's typically not an 'if' it's a 'when'. I was able to get 17 years between my revision at 9 years old and my revision at 26...and then it failed 3 times inside 2 months. Seems to be holding for now, 18 months on. However, some people never need another revision. It's a balancing act - looking after yourself but not letting the shunt stop you from doing what you want to do.

Owl51, that is a very good explanation and history. Thank you so much.

It certainly helps to understand how others have dealt and continue to deal with such matters.

I hope you realise my comment about being ‘asked’ was somewhat tongue in cheek,

I was not conscious at the time and my wife had to give consent, despite being warned I may not make it. (Since confirmed to me face to face in the hospital ICU by one of those present in the OT at the time of my operation).

What grieves me though is the very ignorant people out there (including many who should know better) who have no idea or compassion for anyone or anything, for those who have had a TBI just because they cannot see the disability. Total discrimination.

(I personally think feeling tired, needing food and drink at regular intervals and sleep are not a problem to me. I accept it).

Its forcing others to understand. (I have only recently applied for a Headway Brain injury card, but would be surprised if even that makes a difference to such malevolent people).

I do not like shouting about it though. I dont regard myself as ‘disabled’. I have always been a private person and dont rush up to people and tell them my medical history. Its not appropriate. I take precautions and arrange my time to ensure I can fulfill my needs but I do get stressed by morons.

Nevertheless, I am so so grateful for what the neuros did for me. When I eventually managed to go back and thank the staff it was the most welcoming place I have been to. I wish I could be surrounded by such kindness everyday.

Froggiefrog
Froggiefrog in reply to Shreds

How we deal with what we are faced with depends on so many things, not least our individual personality, which is so much more than a diagnosis. My way would not be everyone's and it would be arrogant of me to think that it should be. My way has rewarded me with a huge amount of positives, which makes dealing with the negatives so much easier for me personally.There will always be those who appear to lack compassion and understanding in many things. My view is to look to change what is in my capability to change and not burden myself with worry about what is beyond my control. Ignorance is here to stay, but finding ways to make that ignorance have as little influence? I personally use my energy for. that.

Hi there,

You could have a look at the UK charity for hydrocephalus, they are called "shine" lots of handy info on thier site and free to join.

Have you had it treated (so to speak) or are you living with it?

My wife's went untreated for 6months, causing her to loose balance and become paralysed on her left side, despite numerous trips to GP which said it was vertigo.

She had an operation to remove a brain tumour when they found the hydrocephalus so after a few months they operated again to fit a shunt in her brain to regulate the flow of CSF.

After much rehab she has some cognitive control of her left side but not much so is permently disabled as a result of lack of treatment in the early stages of diagnosis by GP.

Also depending on if you have a shunt implant in your head, consider getting a comfy pillow to sleep on to avoid sleepless nights.

Regards

Shreds
Shreds in reply to RockinRic

Thanks and so sorry to hear of the trauma with your wife.

Myself, yes I have a VP shunt, and would agree about the pillow, although that seems to vary dependent on how active the shunt has been.

I have learnt to live with it; as the neuros said before my discharge, “initially you will be very conscious of anyone or anything within half a metre of your head”, but you do become accepting and more tolerant as life goes on.

I will look up “shine” so thanks for signposting that too.

RockinRic
RockinRic in reply to Shreds

I think thier advice is right, my wife was very much the same and also for other reasons due to her brain injury from the hydrocephalus and brain surgery.

Re pillow: its possible to use a travel pillow with a hole in, using the hole for tour shunt lump to go in. Also the memory foam pillows which have adjustable filling is great for my wife.

Do you know anything about your shunt, is it affected by magnetics does it have a setting? We didn't get any information but I managed to find out through requesting freedom of information from the hospital the make, model and setting ofy wife's shunt just incase we need the info in the future as we have regular MRI scans due to her brain cancer.

Regards

Shreds
Shreds in reply to RockinRic

I dont now worry about the pillow, I just turn over if I feel pressure on the shunt.

I was told they could magnetically alter it if necessary when I went for my final consultant meeting although I declined a further MRI because I was paranoid it might upset something.

Regards info, much is now computerised so it is easy for them to access it and provide relevant info. I dont have brand or serial number. I do keep a reduced to credit card size document from my final sign off in my wallet with neurosurgeons ID, Doctor, Patient ID and NHS number plus NI number in case it is ever needed. Unfortunately where I have had need to produce it, it is just looked at blankly and ignored. That says so much about the official ***** who claim they need to see evidence.

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