Don't know where to turn

[Liberty82]

Hi, I'm just wondering if anyone could possibly help. My sister has hydrocephalus, she was diagnosed 6 years ago and had to have a shunt in. She has never been right since the surgery, she's in agony on a daily basis, no quality of life and she has a 7 year old and 9 year old who are suffering because of her poor health. She's been to pain clinics etc and they thought maybe the neurosurgeon severed some nerves while doing her original surgery. Recently the pain got so bad and she was so ill and dizzy she could barely stand, they thought her shunt was blocked but they put the ICP in for a few days and monitoring the pressure it appeared to be low. Looking back at her notes it appears the pressure has always been low. They said she'd need to valve in the shunt replaced but sent her home with caffine tablets (pro plus) and said the neurosurgeon would be in touch in 6 weeks and if the pain got really bad to come back to A&E. The pain was bad when she left and has got worse again so she had to go to A&E today, so ill with agonising headaches, dizziness and vomiting. They did a CT scan and set her home again saying neurology couldn't see her and the neurosurgeon would be in touch soon. She's really losing the will to live, her life is miserable, no life whatsoever. The problem is is that particular neurosurgeon lacks any empathy or bedside manner, any docs she's seen have been lovely but she's almost frightened of him because she feels like her happiness is in his hands. He told her before that he saved her life with the surgery and her pain was no concern of his. It'll be up to him if he replaces the valve and she thinks he won't do it. We are at such a loss, we'd pay to see anyone, we are in Belfast but we'd travel to Britain or down south to see another neurosurgeon. My mum is in bits, she can't watch her suffer like this, my dad too, it's awful. All of us. Can anyone recommend a neurosurgeon? I know covid had made things even more difficult but my sis isn't able to he her own health advocate because she's too ill. I really feel that it's up to me to try and do something to help. Money is no object, we're not rich but we'd give our last for her to have her life back. Thanks for any replies x

[pinkvision]

Hi these kind of stories make my blood boil. There's a woman where I live who had a bleed on the brain and the hospital put her on a waiting list, said it would take 18 months, long story short, her family went to the local MP and complained. The woman was in surgery at the Walton Centre within days and it saved her life. Make an urgent appointment to see your MP or NI assembly member asap. Don't take no for an answer and say you want a different neurosurgeon. Then make an official complain as well to the NI health authority and state what has happened.

[Marnie22]

You could call the Headway helpline. They are very good. Their number is 0808 800 2244. I wish you all the best.

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[FlowerPower62]

We were lucky enough to be living near the Walton centre in Liverpool. It really is a centre of excellence. Ms McMahon fitted a shunt for my husband, and he's never had any problems with it. Hope you can get there. X

[Painting-girl]

I'm so sorry, this is a truly terrible time for her and your family. Will her GP refer her for a second opinion - whether via the NHS or privately?

Perhaps you could go with her to explain what you have said here.

I hope you get someone to see her soon x

[Hidden]

I am currently undergoing my rehab at the Regional Brain Injury Unit in Belfast though my accident was in Devon at my sons,I have found them very supportive and helpful

[cat3]

I've no personal experience of Liverpool's Walton Centre but have only ever heard glowing reports regarding its innovative treatment and care.

I received care second to none in the excellent Salford Royal hospital (Manchester) and I know they refer patients with ongoing issues to Walton for intensive follow-up/rehab.

The Walton Center received the top rating of 'Outstanding' by the Care Quality Commission in October 2016 and has retained this rating.

Wishing you well m'dear in finding treatment for your poorly sister ; I hope help isn't too far off.

Cat x

[Owl51]

Hi Liberty82

I also have an overdraining shunt/low pressure issues. I'm also a Belfast patient that has been told "you're alive! People with shunts will always get headaches. Go live your life as best you can!"

I have developed a strategy for pain management from the shunt. It's not just a headache for me, it's widespread agony all down my neck and back, I lose the power in my legs and my hearing and sight goes too.

When the pain hits, get some caffeine in. Also something salty or sugary, something like crisps or chocolate. Not anything 'wholesome' like fruit or crackers. My best bet for caffeine is either Pro plus or a very strong coffee. Once I've done that, I lie flat. As the shunt is overdraining, gravity makes it worse. Paracetamol/ibuprofen do not work.

Over the longer term, I drink lots of fluid and have a high caffeine intake, plus salt. I also wear a thing called an 'abdominal binder' that's usually used for post-hernia surgery. With low pressure/overdraining shunt, it's important to counteract the draining, and try to raise the pressure.

I really do empathise with you and your sister. The things I've mentioned above, I have found from medical journals, not my consultant. Please get in touch here, either on this thread or in a message if you need to ask anything more. It's infuriating to be left to suffer.