Hi @Sarah_ann, welcome to the forum! You’ve posted in the right place, and it’s clear you’re trying to make sure that you explore every option for your mum’s health.
It’s reasonable to ask questions about further scans or another opinion, and hopefully others here with experience of hydrocephalus or similar symptoms can share what happened in their cases.
It also sounds like you’re carrying a lot while managing your own health. Please remember we’re here for you if you ever need to talk to us. Other than seeking support on this forum, you can reach out to us on 0808 800 0303 - we’re here for you.
Hello sarah-ann and welcome to the forum. Please don’t worry about posting im the right place. If you find a place that seems right or logical to you then that will be the tight place and someone on the forum will find it - as indeed I have.
I don’t know if this will help but I have both Parkinson’s and Normal Pressure Hydrocephalus (NPH) and I can certainly tell y;u of how that came about for me.
I was diagnosed with Parkinson’s in 2009 and as part of that process I had an MRI scan. That unexpectedly showed that one of my ventricles was enlarged, and this could easily be seen on the scan. The problem was I didn’t have any of the symptoms that the doctors would expect to see with a scan result like this. My consultant consulted his colleague and they concluded it was a pre birth defect and if the Parkinson’s hadn’t kicked in, I could have died without even knowing there was a problem. Life went on and in 2016 I underwent a two day assessment for Deep Brain Stimulation (DBS). They investigated the enlarged ventricle a bit more at this point and concluded I had NPH. I had heard of hydrocephalus but not NPH anf it is quite hard to find out exactly what it is. I underwent a battery of psychological tests (exhausting and stressful), spent 3 days in hospital having a lumbar puncture and tethered to a pole on wheels holding a bag to collect the fluid followed by repeating selected psychological tests following which they decided it did make a difference and I had a shunt fitted. There was quite a big improvement in my walking, posture and things like better handwriting. The problem is a lot of symptoms and their impact are virtually the same between the two conditions and I can’t tell which is the one that is causing the change. At the end of the day it doesn’t really make much difference the change will happen anyway but I am inclined to think most change is probably the Parkinson’s. The shunt has given mw no problems. As a by the by I was told that there are a number of elderly people around who probably have NPH but are not diagnosed because they see it as part of the normal aging process.
As for the rest of your post it’s hard to really comment given the circumstances you describe although I completely understand you need to know what’s going on with your Mum and that you are only trying to do your best by her. Before getting into private appointments what about getting a second opinion -
I don’t feel I can say anything more at the moment but if you have questions please do post again there’s often someone who can help. I know it’s not much but hope you are able to take something from what I have written
I was diagnosed in late February. The spinal tap gave me instant relief for 24 hours and then I reverted back to my poor balance. It was a clear cut decision to have the stunt inserted which I did on March 5th. I now live a more normal life–not perfect but I can go for my walks, go swimming, work in the garden, paint and weave. I do have headaches quite frequently but am managing. Good luck. I was lucky that my neurologist was on top of things and he new a team of neurosurgergeons in Athens which could see me right away. Private insurance paid for everything. Good luck.
I know this thread is a bit old, but I’m curious if anyone has explored alternative therapies alongside traditional treatments for NPH or Parkinson’s. I’ve read that some people find yoga or tai chi helpful for balance and flexibility. Has anyone tried these, and do they make a noticeable difference in daily life? Would love to hear what’s working for others and any new insights!
Hello @geroruze, welcome to the community. We hope you find it a helpful place to ask questions, read others’ experiences and talk to people who really get it.
