Hydrocephalus in elderly mum and seemly no treatment plan as of yet

[WorriedAboutMum2023]

My mum went to the doctors about 12 months ago and the GP suspected she has Parkinson's. When my mum saw the neurologist he said it wasn't Parkinson's but an MRI revealed age-related changes to the brain. This was a month ago and my mum has just had a dat scan but when I asked her, she hasn't been given any dates for any treatment. I was looking on Dr Google and it said that this needs to be treated within 6-months because the side effects are irreversible. Does anyone know about hydrocephalus and shunts in old age? My mum seems confused and isn't one for asking questions. If the Dr is doing a DAT scan and there is no Date for a shunt, I don't know if they are still trying to rule out other things?

Hi, just seen this message, sorry it's long after you posted! What do you want to know though? Ask away, I have lots of shunt knowledge to share x

Thank you! Mum has a letter saying she need a flow test but there's no Date or what I can see, plans to do that. There's a letter I don't really understand. She has got hydrocephalus. No one seems that concerned. I'm trying to poa but as dyslexic I have asked three people for help, none so far have read the forms so if mum does get poa I think I might be better doing it on my own if I can't even help with forms. I have been explicit with my sibling on my limits. Thanks

I think you need to make an appointment with your mum's GP and attend with her. Take the information you have and ask the GP what the situation is and what happens next.

Yes that's on the plans for the kids go back to school. I was hoping someone else in the family would step up to help me, otherwise I should have done it over Easter but all requests for help are falling on deaf ears. That's frustrating and I don't need the added stress. Letter clearly shows mum has hydrocephalus. A quick Google says it needs treatment before damage is permanent but only I'm worried. I'm second guessing if this is actually a big deal.

She has a DAT scan very soon. Whatever comes from that will go over her head, mum downplays it due to not understanding and the family is happy to go withbwhat mummsays

Unfortunately your mum is in a catch22 situation. The hydrocephalus affects how well her brain works - but she is now being asked to make all sorts of decisions and the hydrocephalus affects her ability to do this.

Although technically hydrocephalus is a reversible cause of dementia, the person does need to be well enough to consent and have the operation.

The only time I have seen this in practice, the person just wasn't able to grasp what operation they were being offered and so they did not have treatment.

You are absolutely right that your mum needs support in going to appointments and helping her make sense of what is happening. Just leaving it to 'what mum says' is not going to work here. I am sorry that this is all being left to you but well done for picking up on it.

Thank you. My sibling hasn't seen my mum in years. She talks to her every few months on the phone so insists mum.is fine. The letter confirms normal pressure hydrocephalus but a Google of that terms confirms that it's not normal, dementia and death awaits. It's really getting me down. Lots of people assume I'm rather stupid so might think I'm being dramatic. I have a biology degree so I'm reading lots about it. No where have I read its going to just go away. Mum has said she doesn't want the tap test. If that was informed 'No' then that's her choice. But just refusing it and presuming she is unlikely to end up in care isn't sensible. Sibling keeps mentioning moving to supported living. If it is hydrocephalus and the letter to me reads that way ( but I'm dyslexic and no one else has read it) then she will die in a care home unless she dies from a fall before that. This is my mum.

Ok so yes, NP hydrocephalus will most likely need a shunt put in to deal with the excess fluid, but it's not guaranteed. Hydrocephalus does not get better on its own and it is a degenerative condition which is why it needs treated, but there are more/ less extreme versions of it. Basically, your mums brain is producing more cerebral spinal fluid than the spinal cord is syphoning away, but if it's still managing to siphon away a bit then the fluid will take a long time to build up to be enough to cause damage, which is most likely why the hospital aren't treating her immediately. The scan will show the size of the ventricles in her brain, and I assume if they don't feel a shunt needs to go in yet then they won't be that enlarged yet. They will most likely keep monitoring her. Shunt surgeries aren't especially dangerous, but all surgery carries risk so they always err on the side of caution. But as PP said, the GP would hopefully offer you some good advice as well. Hope this helps x

Thank you, that's reassuring. I'm starting the lpa this week but I will also try to talk to her gp once my kids go back to school from Easter