Hydrocephalus...?: Hi All, Haven't been on the forum... - Headway

Headway
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Hydrocephalus...?

Hi All,

Haven't been on the forum for a while so thought I would make a return as 3 years on from Bi I am suffering a little and wanted some clarification for the above...

In the last few months I have been getting headaches mainly in the evening and the old Nurofen/Paracetomol cures them but the other symptoms are sever short term memory loss, I forget everything and have to write it down. I get ratty at silly things but it passes. Get very fatigued worse than usual always need a nap at lunchtime and still do but its ok when Iv had it. Balance is off too but only in the evenings. We build and I'm on the tools which again makes my tired its the strain on the cognitive.

My wife of 18 years and I have been separated now for 6 months but it wasn't going well in the past year and a half, I have changed so much since my accident but I do have a new partner and she has so noticed the memory loss and the other symptoms, but she is a breath of fresh air for me. Xx

I have recently been to see a new nurologist and had an MRI this Monday he has suggested that there is a 20% chance I have Hydrocephalus hence the MRI. Only had a CT scan at the time of the accident so be interesting to see. Would or could I have had Hydrocephalus at the time or does it take time to come in?

Does anyone here have or had Hydrocephalus and then had the pressure released. Do the symptoms then disperse. Consultant has explained the solution if I have it and I'm keen to get rid of the fatigue and the headaches.

Another worry is can the symptoms get worse...?

Thank you

Nick

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Nice to see you back. Before worrying about major problems - have you been drinking enough? Headaches are often caused through lack of fluids and if you have been working through this extreme heat you could be dehydrated. Just a thought.....

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Hi thank you and yes plenty of water 2 - 3 litres a day. Ill drink more if I could....

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I was attacked 4 years ago and sustained head injuries. They didn’t detect hydrocephalus initially but I got worse. Had a lumbar trial and NS suggested a shunt. Best thing I ever had done! I still have some headaches, balance and memory issues but having a shunt has changed my life!

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Yes I'm not so worried if I have it as there is a solution and I would prefer to be "cured" of the damb memory issue and tiredness all the time. More will be revealed I hope. I never had an MRI at the time of the accident just a CT scan.

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Hello again, Nick.

I had hydrocephalus with the original haemorrhage back in 2015. My brain didn't like being covered in blood from the ruptured aneurysm, and decided to have a bit of a hose-down with cerebro-spinal fluid. (Exactly as helpful as my Mother-in-law dusting their TV while people are trying to watch it, but, there you go.) With my BI being an 'internal' one, rather than a contact injury, like yours, the fluid was drained off before they started rooting about to plug the ruptured aneurysm, AND because they found two other aneurysms in there, I was initially scanned every 12 months for the first 2 years. (Now on 24-monthly scans, after the second surgery.)

I'm a bit baffled that you haven't been scanned before now, I suppose it depends on locality practice?

If it is hydrocephalus, there are procedures that can be used to drain off the fluid. I'm quite certain that a lot of my on-going issues were caused by the crush-injuries of the hydrocephalus, rather than 'just' the arterial weaknesses, they're not 'specific' to any one brain-area, I have balance and co-ordination issues, visual issues, speech and processing issues, muscle-tremors, fatigue... (I have a telephone directory worth of issues, it's tedious.)

It's good that your team are moving and actually scanning you, rather than saying "Yeah, that happens to some people..." If it's not hydrocephalus, at least you'll have that worry ruled out, but PLEASE continue seeking medical attention/advice for the on-going issues, I 'normalised' all of mine, and tried to carry on 'as before', we'll just say that didn't end particularly well.

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Thank you for your detailed reply. Much appreciated. Life been ticking on fine and as you say iv been normalising my issues, its only my new partner thats noticed them as she doesn't know me like my wife did...memory is shocking and I'm fed up with the lack of energy. I was surprised to that an MRI wasn't done at the time of the accident just a CT scan but I have decided 3 years on to seek help. I have gone private and self funded this as there was a 9month wait on the NHS for an MRI scan...!

Its strange really because as I have commented before here no one prepares you for what may happen later or immediate post accident. Its bloody scary.

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Hi Nick. Sorry to be the fly in the ointment but your symptoms sound like typical after-effects from brain injury and, as often discussed here, they're issues which have to be managed rather than treated. I'd also reached the 3 year point when I realised the 'normalising' was just too exhausting and opted for changes to achieve more realistic goals.

But occasional checks are helpful anyway for reassurance purposes ; I had a couple of MRIs in the first 4 years (yes, long waits) with nothing new found, so nothing's changed in 6 years in terms of memory, mobility, fatigue etc...…. except a whole new acceptance and management of those issues.

I know that a shunt can greatly relieve the symptoms of hydrocephalus but it isn't a miracle cure-all, so you might want to keep your expectations reigned in slightly. And it does seem that, after 3 years of pushing yourself, you've taken on even more, with a change in relationship and an increase in hands-on involvement in your work life.

It can be so hard slowing down after a lifetime of 'dynamism' ; harder for some than others I guess. I hope I'm just talking cr*p and you're about to enter a new & exciting phase of life !!

Good to see you again. Please update us after your MRI.

Love Cat x

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hank you cat always lovely to hear from you. You could be completely right and ill keep you posted...

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Hi,

I have a shunt and there can be a few symptoms.

Mine was first installed in 1996 when I was diagnosed with a brain tumour. The tumour is located on my brain stem and is blocking the flow of Cerebral Spinal Fluid. So I had the shunt installed to drain the fluid.

Before the diagnosis, I was getting headaches which were getting worse in pain and made frequent trips to my GP. I also felt sick and was sick a few times too. I had black around my eyes as if I had been in a fight. I was even told I had tonsilitis which was weird cos I haven’t got any tonsils... so where the ‘itis’ came from I don’t know :).

The tumour could not be fully removed but is inactive right now but this means it is continuously blocking the flow of CSF so I must keep my shunt in at all times.

My shunt worked brilliantly up until 2005 when some jerk of a surgeon “somehow” dislodged it during another operation on my back. I had a replacment shunt and had further problems since then.

My shunt has blocked/malfunctioned a few times before. Normally, if my shunt were to blockup or malfunction I could get headaches or feel sick or I could go into a coma-like state. The last time I had problems with my shunt was in 2010 and I had pounding headaches and my focus was out of whack and I did feel a little nauseous too.

As for now though, I have completely changed my diet around as I used to consume a lot of sugary foods, acidic foods and that is when I had neurological problems. Now I try to eat more fruit and veg, more alkaline foods and I feel so much more better.

So I would not be surprised in the slightest bit if a person’s diet tells you a lot anout their health.

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Thank you for all your replies very helpful.

I have NOT got Hydrocephalus which is a good result but have got a few problems with brain function which the nurophycologist is looking at. Memory is shocking and the cog side knackers me out so we are looking into that with a full brain service.

Definitely think my oil needs changing. Ill let you know as i know.

On another note my headaches have gone, well subsided and I'm pretty sure they were stress related, maybe worried about the diagnosis and work.... Never got them before but had them for a good few months. More will be revealed in the brain service.

Have a fantastic Wednesday.

N

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