Shunt checks

[19KMcG87]

Hi guys, hope all is well x I’m sorry if this doesn’t sound very literate, my heads been rather fuzzy of late making me a bit all over the place!

Well I’m happy to say that after over a month of intense headaches my gp has finally referred me to a neurologist... it always baffles me. I’ve had a shunt and coil for almost 18 years now -do other people get check ups on theirs? It seems unless I have very bad headaches, they don’t check up with me. When I do get bad headaches it’s everything at panic stations, wouldn’t it be easier just to get a simple check up once in a while?!

Chat soon xxx

[cat3]

Hi Katie. It seems a common theme ; great hospital care then...........................nothing. I felt utterly cherished in 2011 after a haemorrhage and was told I'd be under the care of the neuro team for the rest of my life ??

Mmm, I had one recall appointment then nothing. My discharge notes said 'First point of contact is now your GP'. My GP (3 different ones) was/is totally clueless so, after 2 years, I asked for a referral back to the neuro-consultant to discuss troublesome symptoms.

I now see the consultant once every 12 months with an occasional MRI, so at least I have a vague semblance of a safety net !

It seems we're invisible unless we ask for support ; it's definitely not 'on tap' and looks like something we'll need to fight even harder for given the decline in the NHS. So it's good that you've raised your head above the parapet Katie ; I hope it leads to much better support in future and treatment to ease those headaches.

Tell us how you get on won't you m'love............ Cat xx

[19KMcG87 in reply to cat3]

Hi Cat,

Thanks for your response. It’s rediculous isn’t it!in general I look at the NHS, even down to the gp surgery and if they did their jobs correctly the first time round it wouldn’t be so busy nor demanding! I know from a few years back when my eldest was a few months old NHS 24 just listened to my symptoms over the phone and sent an ambulance! Tests galore and a month and a half later I was finally back home, feeling ultimately worse spending time away too! Now I get a bad head I fear telling anyone for getting taken away from my young boys again!

When I finally get seen I will be demanding some kind of assurance, which yes like you I seem to have been promised in the past to no avail...! Just paracetamol and diclofenic it up til then... no wonder I’m so ‘fuzzy’ all the time at the moment!!!

Thanks again for your response, take care,

Katy xx

[cat3 in reply to 19KMcG87]

I'm curious Katy........ what kept you in hospital for 6 weeks after calling NHS-24. Was it related to your RTA ? x

[19KMcG87 in reply to cat3]

I rang up describing severe unusual pains in my head - due to the fact I’ve got the shunt and the copper coil they sent an ambulance... once there I was taken for multiple CT scans, some with dye. A lumber puncture, then I was transferred to another hospital for more tests as nothing was showing... a cerebral angiogram was had too, amoungst many more exams. Transferred back to the closer hospital thankfully for my husband and baby at the time! Then only to be told as thankfully I’d started improving, that it was obviously ‘just a bad migraine’! Oh sure a migraine prevents you from sitting up, showering by yourself, moving etc... all the time it probably could have been a lot less painful inconvenience if they’d listened and checked initially and actually gave me something a bit stronger regards pain relief instead of the norm - it’s cos you have a head injury but we can’t touch you as we’re not neurologists.

Sorry, that turned into a bit of a ramble rant, sorry!

Katy xx

[cat3 in reply to 19KMcG87]

Well I have pretty bad migraines, some lasting 3 or 4 days, but six weeks ?

Hopefully diagnostic techniques have improved at that particular hospital since then ! 😱

Have a good weekend Katy................ xx

[19KMcG87 in reply to cat3]

Thanks Cat, you too, all in the fun eh?! ....... xx

[Matt2584]

Hi 19KMcG87,

I too have a shunt because I have an inactive brain tumour causing hydrocephalus.

1996 was when it all started when I was 11 and up until 2005 was when it went all Pete Tong.

I had an op on my back which lead to an emergency op on my shunt. The surgeons “somehow” dislodged my shunt during the back op and I had a few problems since then.

Another shunt op in 2006. One in 2008 and 2 shunt ops in 2010. I used to headaches every now and then as well.... not anymore.

When I was a kid I used to have a terrible diet, full of sugar and hardly any fruit or veg. It was then when I had my problems. Since 2014/15 I changed my diet for the better. I now include a lot more fruit and veg and try not to eat so much sugar. Sugar is a massive problem, especially refined sugar. And I can safely say that I haven’t had any problems with my shunt/head since I changed my diet.

I realise you may not agree and many, many other people may not agree either but I think that a person’s diet tells you a lot about their health.

A quote I love is “Let food be thy medicine and medicine be thy food”.

[19KMcG87]

No I’d agree to an extent! I was actually following the paleo diet before this headache started, and felt so much better so I’m trying to get back to it. It’s so expensive and such an effort this day and age to eat healthier... but I do love to cook so it shouldn’t be too hard to get back to it, thanks