Anyone here with hydrocephalus?

[PanickedMum]

My DD had an EVT 3 weeks ago. She was suddenly diagnosed with hydrocephalus 19 years after brain tumour surgery. She was initially discharged after 3 nights in hospital, but was readmitted after a couple of days due to waking up with a severe headache and vomiting. She was scanned and had the pressure in the ventricles measured and they said it was fine and the scan showed there was good csf flow. Over a few days on pain relief she was discharged again. She is still having some very bad morning headaches, not every day, and no vomiting. She is also having dizzy spells which seem to be getting worse or more frequent. It's proving impossible to get any expert advice regarding whether or not this is a normal recovery path or whether she needs to be seen. Even when she had the headache with vomiting and phoned the ward for advice she was told 'if you're worried go to A&E' and when she got there she was initially told everyone has headaches and you can't have a scan every time. She called the brain and spine foundation helpline twice today and one nurse said her symptoms were not normal but one said absolutely normal. She rings me if she's not feeling well and I'm not coping well. I am anxious and terrified and not helpful I fear. I'm worried I'm giving her anxiety. Shouldn't there be a way to contact someone from the team at the hospital to get some clear advice?

Hi, I don't have hydrocephalus but other neurological issues (posted on your other thread). Sorry to hear that your daughter is still feeling ill. I think it is really hard to adjust to what is a new "normal" and what is a problem. I also had issues with GPs etc being very dismissive because they were not really aware of the issues, and writing me off as having health anxiety.

Regarding who to contact, as your daughter is so recently post-operative, if there is an issue, I would think that it would be ok to contact the ward she was on. They will have an on call neuro-surgeon who will get back to you within a day or so if they are like my hospital. I also have a wonderful specialist nurse who is a kind of link between me and my neurosurgeon. Perhaps you could see if there is anything like that available - some hospitals have specialist CSF nurses (mine isn't that niche!). Anyway, I can ring her anytime between Monday to Friday with any problem and she will sort it out/ contact my neurosurgeon. You could also leave a message with your neurosurgeon's secretary with your concerns, although this would not be a very urgent route. Hope your daughter continues to recover and your worries can be allayed x

Not me but my ds has hydrocephalus, he's 4. My son's paediatrician says that we should call someone if his headaches are so bad that calpol and neurofen don't help.

There appears to be no specialist back up, no route to advice. She's spoken to specialist nurses on the brain and spine foundation helpline, but I would have expected the hospital to have something in place. I found that helpline on the internet. Yours sounds like what I would expect lyrebird. It's really not easy to be sent home a few days after major surgery, with a question mark over whether or not the op has worked 'well enough' and no guidance whatsoever about what can be considered a normal recovery path.

That doesn't really sound good enough. I think that I would be like you. I get quite panicky if I have a problem and there isn't a way of solving it. Does she have an outpatients appointment booked for a follow up? Mine was about 6 weeks post surgery. I would be pushing for a clear plan to be put in place for contacting them (and when it is necessary to) then. Also, remember that if you are really worried and cannot contact someone any other way, you could always ask the PALS team at the hospital to liaise with the neurosurgery team. I haven't had to go down that route but I believe they are quite effective at advocating for patients.

I found a Facebook group for my condition that is very supportive, and that has a lot of really useful advice, especially on what can be expected post recovery. It could be worth finding a hydrocephalus one, especially if you are at decent sized hospital, because the people on there might have hospital-specific knowledge of how best to contact somebody. I pretty much just use Facebook for this (and cat videos!) Sorry for the essay!

I have it. Have since birth. I'm 18. I've been fine since I was 8 though - no revisions of shunt since then. My criteria for shunt failure is: if I have a headache that paracetamol isn't touching, and if I vomit as well - if I went to the neuro team with just a headache, they'd refuse to do anything.

I'd say that the fact she isn't vomiting constantly with the headaches is a positive but it still doesn't sound good. Trust your instincts and kick up a fuss if needed. I can't advise who to speak to - I have a neurology team that I can meet with if I have concerns, maybe this is something that should be arranged?

I'll tell her to try Facebook. She's really down today, very frightened I think. She rang her surgeon's secretary and a nurse came on the phone to speak to her, but again said the headaches were to be expected. She was sent home with 30mg codeine tablets so I assume they expect some quite severe pain. Anxious that's good to hear that you haven't had a shunt revision for so long, she's terrified if they do put one in she'll be there every 2 years and her life will be taken over by this. There doesn't seem to be anyone to meet with to discuss concerns, it's all very odd. I have no idea how their shunted patients go on. We are in Bristol and they were excellent when she was a child and she had her tumour.