bessie

Thanks all (again!) I phoned NHS Direct as my mum wouldn't go up the hospital until they said to her it was best if she got it checked out. So for the past 4 hours we have been in A&E and were seen by the doctor who said she had a subconjunctival haemorrhage which is not related to her having an SAH. He was very reassuring and said it would fade within 2 weeks. We also had an email from Kings and she has her follow up appointment for next week. It sounds like it was booked in weeks ago but we didn't receive the letter, so not sure what happened there. I think I'm always going to worry at any little thing she has since all this happened.

Hello, I would like to ask 2 questions. 1.) My mum has a bloodshot eye, the side her coil and shunt is fitted. Well she actually had another one 2 weeks ago but it cleared up. This one though is pretty bad. Should we be worried? Is this connected to her SAH? 2.) After her shunt op in August 2010 it said on the discharge letter that she would have a post op follow up in 3 months. We haven't heard anything so my dad emailed the clinical nurse at the hospital but are still waiting. How long is usual for a post op follow up? Sorry if it seems I only come on here to ask questions but I can't help worrying and I don't have anyone else to ask except on here.

Hello Lauren, My dad also hid his emotions when my mum had her SAH. Thats why I'm glad I found BTG because I felt I couldn't burden my Aunties who were also really worried about my mum and I had to have an outlet as it was a difficult time. I felt I had to be strong in front of friends and family. Alot of people on here helped and it was good to have somewhere to write about what fears I had. She is in a slow recovery now after her shunt was fitted, however I still worry over the littlest of things. Take care.

Thanks - Shes alot better and the flu and chest infection have almost gone - although it was pretty bad lasting about 20 days. She didn't take the medicines at the same time and left several hours before doses. She'd soon tell me if I gave her too much - shes got very bossy since her shunt . We've had to make another appointment to see my mums GP as the doctor who did the home visit cannot do anything about chasing the hospital, so we are having to wait until the end of the month to see my mums usual GP (so we've been told)?

Hello, I've been reading the thread about coughing and coils moving, but my worry is coughing so hard it causes another burst aneurysm. My mum has flu and is on antibiotics for a chest infection at the moment and she is always coughing. She keeps complaining about headaches and tonight she said it felt like a bomb in her head. That really worried me. She is also taking lemsip and cough medicine. She had a shunt fitted in August 2010 and was supposed to have a post op scan after 3 months but we haven't heard anything from the hospital. In fact its been a year and a half since her SAH and she hasn't even had a follow up scan. I keep telling her to visit our local hospital but she keeps saying she'll be alright and shes had enough of hospitals. She is seeing the GP in a couple of weeks but I can't help worrying in the meantime. Another worry is that since the shunt her memory has come back but since her flu she seems forgetful again. She took a paracetamol and forget she had taken it 10 minutes later.

Hello Mum, How are you (hehe sorry but its nice to see you writing things after all this time especially on a forum which you could never have done before your shunt). I found btg a real support when my mum had her SAH. I was so scared and she had alot of complications and being able to vent on here really helped at the end of some difficult days.

Hello again all, So sorry for not posting anything for such a long time. My mum had the shunt fitted in August 2010 and came home 2 days later. We saw an improvement a few weeks after the operation. She can now shuffle along with a zimmer frame, although at first she hated using one. She still needs a wheelchair but can transfer from that to a table we her zimmer when we go out to eat. I told her about this site and she has signed up and wrote her first post a few weeks ago - she could never have done that before her shunt : http://www.behindthegray.net/vbulletin/showthread.php?6399-Your-help-is-needed!-How-has-Behind-the-Gray-helped-you/page4 (reply number thirty eight) It seems she was having parties while she was unconscious in hospital and we were worrying! Thanks to all on here for your support over the past year and a half

Thank you We had the meeting with the consultant and he basically said that as my mum has a mild form of hydrocephlus it was upto us if we wanted to go ahead with the shunt. He said he couldn't make any guarantees but he thinks she would benefit from having one fitted. If she doesn't have it done he thinks she will be bed / chair bound for the long term. After about a week of 'what ifs and buts' we have decided to go ahead with the operation. My mum, unfortunately, would not be able to make the decision for herself. I'm dreading having to tell her that she has to go back to hospital for another brain operation. Thing is, I'll tell her in the morning and by the afternoon she will have forgotten. I'm looking at her now and shes watching 'deal or no deal' and eating a sandwich. I just hope we have made the right decision on her behalf?

Hello Sarah, Sorry for not picking up your reply but because my mum is at home I don't get much spare time. Was it the rehab unit at Sevenoaks your mum went to? They wouldn't except my mum there. They said because she had a catheter in situ they couldn't take her?? My mums follow up scan showed fluid in her brain ventricles so she is visiting the consultant tomorrow to see the benefits of having a shunt fitted. It is frustrating - you really have to shout to get heard with regards to her physio anyway. Then again they still ignored us. Hope your mum keeps improving

Hello Rod, Not really, finding it hard to except how my mum is at the moment. Ditto - my mums pain is in her right shoulder also. Spoken to the GP and he prescribed paracetamol at first but now she is on gabapentin as he agrees with the district nurse and the physio (before they dumped us) that it could be neuropathic pain??

I am one of lifes worriers I'm afraid. Shes saying she has shoulder pain at the moment and I panic over that. Try not to though. Well the physios told us yesterday that they are discharging my mum from home physiotherapy and that this is how she is going to be and there is nothing more they can do to get her standing and walking. I knew it was coming so I refused to attend their meeting. To be honest after 3 attempts at getting her to stand was unsuccessful they gave up and give her a balloon to tap for a month instead So its left to me and my dad to continue with her physio. The physio team call it maintenance, but I call it trying to get her to improve and hopefully standing one day. Then who knows!

Thanks Paul. Not sure what blood vessel burst but her head is always leaning forward after about 30 mins in her wheelchair. When she goes back to bed her head is always leaning either one side of the other? She does have severe balance problems. We have been told she can have an MRI scan towards the end of March. So I hope this is just part of her slow recovery and these symptoms are not because of anything else going on in her head.

It has been such a worrying 8 months. She did have a grade 4 bleed, plus the ventriculitis infection, then sepsis and then hydrocephlus. She did go through it. The physios seem to think its her cognitive function thats holding her back, but her stiff neck, confusion and balance problems seem more like hydrocephlus symptoms to me. But as you said Paul about the bleed clearing itself, the other part of my mind thinks that her brain has been through so much that she is going to have these symptoms. I've got a leaflet for headway, but haven't phoned them yet. Perhaps I ought to. My dad has contacted the hospital to express our concerns to them and to bring her check up scan forward if possible. Just waiting for a reply back now. Thank you - it does help to express my worries on here and also to read others experiences.

Thank you for those links. Its much appreciated. This is where my confusion lies because one of the websites says there is no non-surgical treatment for hydrocephlus, yet my mum was sent home after treating it with lumbar punctures? Is she confused because of the SAH and brain infection or does she have hydrocephlus again. Its so confusing to me let alone her. Not sure what to do really. Shes having a follow-up scan in April, should I wait until then or talk to the hospital about my concerns now?

Hello, My mum had an SAH back in July 2009 and had complications, one including hydrocephlus. She was having daily lumbar punctures in hospital to relieve the pressure and they were gradually reduced until she didn't need them anymore. After a spell of no lumbar punctures or scans for about 8 weeks she was sent home. She had one last scan and lumbar puncture, before she left hospital, and the pressure was showing as normal so they sent her home. She is completely bed bound and has to be hoisted into her wheelchair at home. She is having physiotherapy but is not making any significant progress after 12 weeks of physio. She finds her right side difficult to move and her short term memory is very poor. Can anyone advise on the signs to look out for with hydrocephlus?