Nicjones123

Rachel, I am so so sorry to see your post. It is a horrid horrid disease and I can't understand why some survive and others don't. Stay strong but allow yourself time and space to grieve. X

Thanks again everyone - this site really is a great support. Daffodil - I think at the moment mum is happy with her levels of 'activity'. Yesterday she managed to get downstairs and sit in a chair for a couple of hours, today we had some family over for lunch and she managed to join us - it was brilliant. She did feel shattered afterwards but we were so pleased she could join us! I think people are surprised at how well she is doing. She really is taking it all v well and resigned to the fact that she has to take it v v slowly - we thought she would struggle with this as she was so active before. She retired 3 years ago but got bored (!) so started doing loads of things like becoming a magistrate, joining a book club, volunteering at the local national trust house etc. all these things have obviously been put on hold for a while but I guess she is lucky (in many ways ) because she doesn't have to work and worry about going back to work. My Dad is relatively relaxed about the DVD risk (compared to me but i am a worrier as you can tell!) but he knows its there and I think he would like to see her a bit more active, but at the moment it's just too much for Mum. I may give her GP a ring in the morning and get some independent advice - I know dad finds it difficult to advise on mum and would prefer we all go to her GP which is understandable. He's not legally allowed to treat her anyway. My sister is not working at the moment and is looking after her (Dad has to go back to work tomorrow). I am spending every day with her too but my maternity leave runs out next week so I have to go back to work - that will be difficult Leonard - thanks for your response. You have an incredible story. Did you have an operation to secure the aneurism after the initial bleed? Actually, I will go and read your tick tock post. Paul and Karen - thanks for your replies, that may be the answer that they only give heparin on a short term basis and she is no longer deemed at high risk. These are all questions we would have asked the consultant in France had we spoken the same language! Roll on the appointment with the neuro surgeon she has been referred to (6 weeks time)

Hi, My mum had a SAH 6 weeks ago in France. She was in intensive care for 3.5 weeks and then discharged home back to England. She is making a good (but v slow) recovery so far and gaining strength each day. The reason I am writing is that she is v much still bed bound, although she is sitting up in a chair more and more each day and probably spends about 4- 5 hours a day out of bed. She can walk v small distances eg to and from the bathroom. When in hospital she was on heparin to reduce the risk of developing a DVT but since she was discharged home has only been on pain killers for headache and wears flight socks. I just wondered if anyone has any experience/ knowledge of managing the risk of a DVT - were you on drugs such as heparin for a long time if you were still in bed a lot? She is doing excercises daily now (which a physio gave her) and does wiggle her toes as much as possible when she's in bed. I am still v nervous about anything happening to her as she has made such a brilliant recovery so far, I would hate anything to happen to her which is preventable. Thanks, N x

Thanks everyone - I am v glad I found this site! Mum has had no jaw pain for over 24 hours now and headaches def seem to be less when she wears an eye patch. She has had a couple of good nights sleep too which also makes her less sleepy in the day. In summary I guess today has been a good day I have an 11 month old baby boy who has kept us all going over the last few weeks and has been on top form today and kept mum and dad entertained. We are going to celebrate his first birthday next week, not quite with the big family party we all had planned, but probably with a little tea party in Mum and Dad's bedroom. I can't wait Mum had a visit from her GP who checked blood pressure which has come down and also sent a referral letter to a neuro surgeon in Oxford so she is now in the NHS system which is good as we did feel somewhat alone when she was discharged from the French healthcare system and sent straight home. Thanks again for all your responses, it's great to hear so many positive stories!

Thank you Paul and Daffodil Daffodil - dont worry, I did wonder if it was a permanent shunt and will keep my eyes and ears peeled for what I imagine were more symptoms of hydrocephalus such as worsening headaches, confusion, worse vision etc? I would much rather be armed with the knowledge and act on it than not, so thank you! Paul99 - thank you for your kind words. I know mum is a fighter and she has a very strong family who are right by her side all the way. It's useful to know the blood may take 3 months to be re-absorbed. I don't think the jaw pain is unbearable and she is eating without problems. She described it as a level 3 or 4 on the pain score of 1 to 10 when the paramedics asked her earlier. This seems bearable, especially compared to the headache we called the ambulance for last week which she described as a level 8 (and this turned out to be nothing on the scan so that's positive too).

Thank you so much for replying! I am a bit nervous to ask about the intervention you needed later on as I hoped we had been through the worst of it but it sounds like you got through that too which is brilliant! I didn't think about the pain being from the drainage - yes she was sedated for that and on a ventilator for 7 days so maybe that's why. That's a much more palatable explanation than a heart attack I'm sorry you have had to go through this v challenging year and I really hope you are coming out of the other side, and thank you again for taking the time to reply.

Hi, I have just joined this as my 65 year old Mum had a SAH 5 weeks all while on holiday in France. She had a temporary shunt inserted as soon as she got to hospital for hydrocephalus and was then taken by helicopter to another hospital for coiling of her aneurysm. She spent 6 days in an induced coma and started waking up on her birthday, as you can imagine this was the best birthday present ever! We as her family had the most agonising 3 weeks waiting to see if she would have any deficit from the initial bleed or vasospasm. It appears Mum was one of the lucky ones as her brain appears largely unscathed and her personality doesn't seem to have changed, although I know we ha e a long journey ahead. One of the first things she asked me was if I had seen her in a coma, when I said yes she said 'oh sweetheart I am so sorry', which sums mum up - always thinking of other people. My Dad is a GP and Mum used to be a nurse so I think this made it harder as they were acutely aware of what was happening - my brother, sister and I didn't really understand the gravity of it although a few google searches during the darkest hours were probably not helpful. It was just hard as we had little info to go on as none of the doctors spoke much English and we only know a-level French which didnt include neuro surgery vocab! Mum was discharged home after 3.5 weeks and is doing ok. She is still v much bed bound and has daily headaches and fatigue but can walk the short distance to and from that bathroom. I guess this fatigue is to be expected after such a knock to the brain and being in bed for 5 weeks. We have had to call an ambulance twice since she's been home. Once because she had a v severe headache (she couldn't compare it to the original bleed as doesn't remember any of it) but was taken to hospital and had a scan which was fine. Then today she had some chest pain and jaw pain - we called the GP who advised to call 999 as a precaution. They did and ECG which was normal. I just wondered if anyone else had experienced this jaw pain (i have read this can be common after a craniotomy but she had the coiling op so not sure if this would apply?) Also, she has double vision and headaches at the moment and we have been putting an eye patch on each eye got 2 hours before swapping it over which seems to help. I am basically looking for any reassurance as we have been so frightened by the events of the last month. I know we are so very lucky to still have Mum and just hope she goes on to make as full a recovery as possible. Thank you for reading this!