You sound so lost and lonely. I’ve just Google “Hydrocephalus Support Group” and found several organisations. Have they ever been any help to you?
Are the school aware of the situation?
Do the children belong to a Young Carers Group?
Hi Phoenixwings
I’m so sorry about your husband’s situation, and yours. I hope you find help soon. I certainly understand about long-term crying
My situation is different. Normal pressure hydrocephalus (NPH) is something that emerges later on, post 70. If I understand. My husband pretty much spends his time on his phone and watching the news on TV. From what I understand, he was misdiagnosed for years. He’s complained about nausea and other symptoms since pre-Covid. He was seeing a specialist who diagnosed a vestibular disorder. Maybe it is — who knows?— but if they had had the intelligence to turn off his pacemaker for an hour, this could have been discovered long ago and treated. Is it dangerous if it goes untreated for a long time? He’s having another kind of scan in a week or two and seeing the neurosurgeon in — wait for it — August! Months away. At least he still drives and shops and cooks a bit (he always has) but not with the flair he used to have.
Where am I? Feeling guilty for pursuing my own activities. I have to break the news that Easter is over and U3A is starting again — this always gives me great anxiety because of how he reacts. I‘m not cut out to be a carer.
I’m rambling. I think any info about the condition and what to expect would be brilliant. We have no children, no siblings.
I’m glad you liked Suki! She was gorgeous indeed. We lost her twin sister, Shandy, two years ago. It’s so so hard and I miss them so much. Take care.
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Hello,
Started new thread as I couldn’t reply on the last one for some reason.
@AnimalLover Pressure can change which is why it’s supposed to be monitored but sadly it doesn’t seem to be necessary to the medical profession. From NHS guidelines though any symptoms such as nausea, vomiting, severe headaches that don’t go away with painkillers, then that’s when to seek attention. My husband was going back and forth to the doctors complaining of these symptoms, he went for CT scans. In 2014 he had one that showed increased pressure but nothing was done. We still don’t know why that was. Months before the accidents he had neck pain, so he’d gone back to the doctors. He was going to be referred to Neurology again for another scan but because that doctor sought a second opinion from a doctor instead of going with their gut he was told to do neck exercises instead. The crying all the time is awful! I don’t know if I’ve ever been properly happy in the last three years or if I’ve just been masking, taping over the cracks. It’s crazy how your husband has to wait until August though. My husband has spent countless hours in A+E having CT scans done, so there’s always that route if his symptoms aren’t improving and you think he may need one urgently. It is tedious, I know.
@bowlingbun When the accident first happened in 2023 I got in touch with Shine. At the time they were going to do a procedure called a BOLT which would measure the pressure over a 48 hour period but would see him having his skull drilled to do so, and he wasn’t keen. Shine at the time were helpful saying I should push for an MRI before they jumped into intrusive procedures. He ended up going with the BOLT which showed there was intense pressure and he ended up having his shunt replaced after 30 odd years. I’ve been in touch with them since but I haven’t found them useful. I’m with a few others but haven’t found them useful, either. My children are aged 6 and 2, so still pretty young I think to be a young carer? I don’t know how old they’d have to be.
Past two days have been a living hell. I’m not sleeping at night at all. I’m either crying my eyes out or I’m thinking about multiple things. We went out with the children and our 6 year old was up and down wanting to do everything, and I was hanging on by a thread. Same today. She usually goes five-six hours before needing time to calm down but my husband thought she was fine. Lo and behold she was uncooperative, argumentative and just hard to talk to. I had a sort of panic attack where I couldn’t breathe (these have been going on for a while) where I get really upset and apparently that’s all in my head according to people. They say he’s fine, he’s doing his best which I get but his lack of awareness scares me.