Annyone have experience with NPH (Normal Pressure Hydrocephalus)

[CaveMum]

Wondering if anyone has experience of NPH in an elderly relative and whether the surgery (shunt) saw significant improvement?

Dad is 75 and was diagnosed with NPH last August. He has got progressively worse and is now at a point where he can barely walk (thankfully his balance is fine but he can only shuffle very slowly to get around), keeps getting confused and has to wear incontinence pants.

We ended up looking into the option of private treatment last autumn as we were getting nowhere with the NHS (just kept saying he was on the waiting list for surgery and they'd be in touch when they had a slot). We got pretty far down the road with the private hospital and it looked like he would get the surgery in March, but at the pre-op assessment they decided he had too many complicating factors and that the surgery was too risky for them to undertake.

The one positive was that the surgeon he saw is the same one that does the NHS operations and he was able to put a priority flag on dad's records and we are now hoping he will have surgery at the end of May.

My worry is that the damage has already been done to his brain and that we may not see much improvement.

His complicating factors are lengthy - he is totally blind, hard of hearing (has hearing aids and is ok if you speak loudly standing next to him), has a pacemaker, has slow progressing prostate cancer, is pre-diabetic, has blood pressure issues and more. I'm just so worried about the surgery for him: the surgeon explicitly said he needed to be near an intensive care unit and may need to stay in hospital for at least a week (normally the procedure just requires an overnight stay).

He lives with my mum (70 but in good physical health) who has been a saint in looking after him. She's having a break with her sister this week while me and my brother share looking after him. I live 200 miles away and between work and having 2 small children don't get to visit as much as I'd like to, my brother is about 100 miles away and comes down about every 4-6 weeks.

I think this is more of a vent/ramble than anything else, but I'd appreciate any comments from anyone who has experience of this condition and how the surgery went/whether improvement was small or significant.

@CaveMum - how did your dad get on? Looks like my mum is about to get the same diagnosis at 73.

@hanahsaunt sorry, I’ve just seen your message!

My dad did finally have the surgery in July, despite us being repeatedly told he was high priority. Apparently they only schedule the surgery on one or two days each month at the local hospital, despite it having a renowned neurology department.

The surgery itself went fine and he was home after a night in the hospital. He suffered headaches for a few weeks and had a lot of bruising on his head and neck, understandably.

His mobility and memory issues definitely improved after the surgery, not massively but a noticeable change. Unfortunately about 3 weeks after the surgery he ended up admitted to hospital after what we can only describe as a “funny turn”. An MRI showed a small bleed on the brain but it was not a TIA (mini stroke) and they couldn’t confirm or deny that it was as a result of the surgery.

He spent 2 weeks in hospital, picked up a urine infection while he was there so had to be treated for that. Since coming home he’s still wearing a catheter, though we’ve been told that will come out in the next few weeks.

I’m actually looking after him for a few days at the moment as my mum is having a break with her sister. He’s much more lucid than before the op, to me, and whilst his mobility isn’t great it is better and he’s now got a social care package which means the pressure is off my mum a bit.

Hope that helps in some way.