Dogenzenji Posted August 25, 2011 Share Posted August 25, 2011 Hi there ! My partner suffered an SAH last week, now 8 days in. The aneurysm was coiled about 24 hours after the incident and was succesful. Throughout my partner was conscious and alert with sense of humour intact. She is on nimodipine every 4 hours and keeping the fluids up (2-3 litres a day), an MRI scan 2 days ago was good. Today she has learned that she is going to be discharged tomorrow from the Walton centre in Liverpool, this does seem 'early' but the consultant says the operation was a complete success. I guess what we both need to know is what to to expect in the early days? The consultant mentioned that care in the first three months is critical...what are the chances of any more 'emergencies'? There has been some taste changes and a visual afterimage that is fading but apart form that I for one am just hoping that the life threatening stuff is over and I can just give her the best care I can in the coming months / years... Any advice this early in? Thanks & Regards Quote Link to comment Share on other sites More sharing options...
Ian53 Posted August 25, 2011 Share Posted August 25, 2011 (edited) Hi there yourself! The Walton Centre is probably one of the best in the country and I'm sure they wouldn't discharge your partner if they considered there was a likelihood of further recurrence. Statistically the greatest risk is not surviving the initial SAH. Now your partner's successfully come through the op, hopefully the recovery will be plain sailing. Obviously everyone is different, but I found the hardest parts to be the initial 'panic attacks' when I thought every bad headache was another SAH about to happen, and also just getting used to the changes in memory, concentration and energy levels .... but I learned to take it easy and not worry, which probably helps on the road to recovery. I think there are some good leaflets about post-op recovery on other sites, such as the Brain & Spine Foundation. They're usually also available at reception at the Walton Centre. Good luck to you both Ian Edited August 25, 2011 by Ian53 Quote Link to comment Share on other sites More sharing options...
Riane Posted August 25, 2011 Share Posted August 25, 2011 Welcome to the site. I am so happy for you that you still have your partner with you. She will need tons of your love, compassion and understanding over the next months as she journeys through recovery. Some resources I have found useful are: The Southampton site here where there is tons of info on recovery A letter from your brain here. And the video of Patients experiences here. This video is about 1/2 hour long and may be easier for her than reading, although it may not, depending on her personal recovery. In my darkest down days I tell my husband that what I need is for him to see me, accept me, love me and trust that I will find my way out. On those days I feel like a child and need his leadership to direct me to tasks (including rest, drinking water) and remind me often. At the same time it drives me crazy when he tries to "fix me" by suggesting how I can make it better - he really has no idea what it feels like in my brain. He has learned not to do that. It's a tough balancing act for him. He has been amazing, he has been my rock and I don't know how I would recover without his love and support. On good days I still can't make what used to be simple decisions. My husband didn't ask me to participate in decision making for a while. That was something they told him at the hospital and we came up with a code phrase. He'd tell me, "Don't worry, I've got this covered." That gave me permission to not have to spend any of my limited brain energy on problem solving. But, as I have gotten better he has started to consult me more. I can't stand this, it feels too overwhelming for me. I have just recently asked him to stop consulting me, let me know what we are doing, what is expected of me, make requests, be clear. I guess my recovery requires me to be "child-like" instead of the confident, over functioning woman I used to be. Perhaps this will ultimately lead me to a more balanced way of life (one can only hope). It has certainly led to a more balanced marriage. I wish you and your partner all the best in your journey together. Be her rock, it will do you both a world of good. Good luck. Quote Link to comment Share on other sites More sharing options...
kempse Posted August 25, 2011 Share Posted August 25, 2011 Hi there, I'm trying to cast my mind/memory back to those early days to give you some useful advice, but I am failing miserably! I guess it is not too early to be discharged if the consultant is happy with things. I was in for 11 days in total although I was not 'coiled' until the 4th day, (11 days after the event). I don't recall being told that the first 3 months were critical - I might have taken to my bed if I'd known that! To ensure she takes the nimodipine at the 4 hourly intervals is helpful - I used to set my phone alarm as it meant taking it during the night - I think the drug is to prevent vasospasm, so is important. She will no doubt be told of things not to do, such as lifting or basically anything that might strain the brain. As with all major surgery, I think rest and plenty of fluids will help. She might get strange sensations in her head over the coming weeks which is quite normal. Let us know how you get on or give us a shout if you have any concerns. All the best, Sarah Quote Link to comment Share on other sites More sharing options...
Sandi K Posted August 26, 2011 Share Posted August 26, 2011 Hi and welcome to the site. How wonderful that you are searching out answers in preparation for providing the best possible care for your partner. It will be really good when she is feeling well enough to join us too. She's going to be very tired. Her brain will need lots of sleep and lots of time in quiet. Sandi K. Quote Link to comment Share on other sites More sharing options...
Gill C Posted August 26, 2011 Share Posted August 26, 2011 The only advice I can give is lots of rest & quiet time, also try not to fuss too much as that can be infuriating! Easier said than done but be prepared for some anger & frustration which may be directed at you becasue you are the nearest to them, this is perfectly normal. You may also find it useful to contact Headway for help although they tend not to come until much further in the recovery process. Another good tip is lots of water especially when you feel fuzzy or have a headache. Good luck with the discharge, I am sure they wouldn't discharge her if they thought she wasn't ok - for me it was 17 days but I had vasospasms during & after my op. Quote Link to comment Share on other sites More sharing options...
Louise Posted August 26, 2011 Share Posted August 26, 2011 Hi there warm welcome to the site. lots of rest, drink plenty of fluids, listen to the body when it says rest (we all tend to ignore that one) Gill mentioned a good one frustration is a horrible thing when you cant do things you used to but there are many of us who have been there done that, come out the other end, so take time for YOU because your the one that needs to be able to cope with all that..... look forward to hearing more from you, and hope the site helps.... take care Quote Link to comment Share on other sites More sharing options...
Dogenzenji Posted September 8, 2011 Author Share Posted September 8, 2011 Hey, thanks everyone, well she was transferred to the Royal for a few days then discharge, a dodgy day on transfer with some disorientation, but now all OK. Now 22 days in, some memory problems but nothing massive. One visual disturbance she calls 'Africa' as the shape is the same but only visible in the right eye. Some taste change and the feeling that it is difficult to smile, and of course the exhaustion, early days still but I think she has signed up herself and will get round to posting once she can use the laptop more. Quote Link to comment Share on other sites More sharing options...
Winb143 Posted September 8, 2011 Share Posted September 8, 2011 Let her know you love her still and keep calm and try not to worry too much .. Easier said than done etc. I know Better out of hospital...too many germs in the hospitals I was in..but that was me..... Good luck and take her for a meal...you have both been through it, now smile All the Best WinB143xx Quote Link to comment Share on other sites More sharing options...
donnamarie Posted September 8, 2011 Share Posted September 8, 2011 Welcome to the site everyone has more or less said everything but again i will say rest rest rest look forward to hearing from you donna Quote Link to comment Share on other sites More sharing options...
Lin-lin Posted September 8, 2011 Share Posted September 8, 2011 I wish someone would have given me this link in the early days:- http://www.headway.org.uk/home.aspx It’s a link to Headway, which Gill has already signposted you to. I stumbled around with my recovery for just over one year, blindly lurching from one confusing moment to another! It was a godsend when I was able to talk to people at Headway who had experienced something similar. I also avail myself of their counselling sessions with a consultant neuro psychologist, which has helped enormously. This Saturday, my boyfriend and I are going on a trip to a country park with Headway and we have made lovely friends there. When I left hospital, I wish someone would have told me that a SAH falls into the category of a ‘brain injury.’ Do not be alarmed by the phrase, it does rather conjour up an image which may be difficult to digest, but it just means that the brain has suffered a trauma and is healing. Although I have recovered well physically, and look ‘fine’, there are some hidden differences in my emotions, cognitive abilities and personality. I am by no means dysfunctional(!) but there are some differences in how I was before to how I am now. (Some aspects of my personality have improved, so change can be a positive thing!) The mistake I made in the first year was to try and fight every change in me. I now accept that I am a quieter person, that I do not like busy environments and I accept that I cannot deal with high levels of stress. It is important that the people looking after the person with a brain injury learn as much as possible about the condition, so that things are understood and worked with positively. My parents and boyfriend have made a huge effort to read up as much as possible on brain injury and as a consequence, they have provided me with a very strong circle of support which I can draw from always. In the next few months, you partner just needs a huge amount of rest, but do not confuse this with just physical rest, mental rest is important too. I.e. having lots of visitors, particularly surprise visits can be very tiring. Unfortunately, a lot of recovery is trial and error and we learn by our mistakes. The basic rule of thumb is; if it starts to feel uncomfortable – stop!!! Lynne Quote Link to comment Share on other sites More sharing options...
Spadgie Posted September 20, 2011 Share Posted September 20, 2011 Hello everyone - I'm the partner who had the SAH nearly 5 weeks ago now. I've been looking at the forum a lot and getting reassurance from what people write, but finding it hard to muster my thoughts wasn't ready to post anything till now. I am recovering well in most ways, but wondered if everyone else has or had the feeling of detachment I have noticed? I've been feeling quite disconnected from reality recently and find it hard to accept what happened to me (and what might have happened), and my brain just does that lah-lah-lah song when I try to think about it. Talking about my feelings with him helped a lot, but I think I'm still in denial to some extent, and perhaps still in a state of post-traumatic shock. I worry that when full realisation kicks in it will be a big downer - he thinks so too, so we are just chipping away at it by talking it through in short bursts. I was wondering what others' experiences of this have been? Quote Link to comment Share on other sites More sharing options...
Winb143 Posted September 20, 2011 Share Posted September 20, 2011 Annie Hi, Just take it a day at a time, I asked my hubby what happened blah blah lol he switches off as I was catching all germs ie sepsis. venticulitus and MRSA ...it is bad for us but it is worse for our family.... I was totally out of it and family went through it..but every week I get better...was told I wouldn't walk again and perhaps I should go in home.......My family never gave up on me , so I have started to walk a little further each day Do not give up when you get down....keep smiling.....and sing xx and we are here!! so yeahhhhhh we made it xx Love WinB143 Quote Link to comment Share on other sites More sharing options...
Kate71 Posted September 20, 2011 Share Posted September 20, 2011 Hi Your wife sounds a lot like me - conscious throughout and sense of humour intact... I was so keen that people around me wouldn't worry (and I guess not wanting to face up to it) that I was keen to get on and have "business as normal" but that was a mistake physically - you both need to understand that even if she has escaped with limited symptoms, she has suffered a major trauma and must rest as much as possible. Reading is exhausting. Visits and phone calls need to be monitored and kept to deadlines. I forbade people from visiting for me for a while because I just needed to recuperate... your wife will know what she wants - but maybe you can act as her filter if needed ("no I'm sorry, doctors orders - maybe you could come next week" etc)... also it was made very clear to me that the secondary threat was the disintegration of the blood back into the system in the 21 days post SAH - it's vital that you take the 4 hourly blood pressure tablets - even at night (obviously if your consultant tells you otherwise then listen to that!!) but I found that I got frustrated with remembering whether I had taken my tablets or not - and I had to write everything down when it was taken. I needed to understand that most people forget things that are routine (like regular drugs) particularly when you're tired and it was ok that I couldn't remember emotionally - it's a roller coaster... there's an unexpected euphoria - you've survived! perhaps there's a sense of being phenomenally grateful for life etcthen there's a huge down and incomprehension of how to understand what's happened - I guess you need to listen and hear her without trying to offer solutions... it's trite but most women need to be heard rather than fixed... obviously everyone is completely different - personally, I was resilient and optimistic - but later have really suffered from heightened anxiety and panic attacks - that hit a good 3 months after the trauma and when I least expected it... you will also need support. don't discount everything that you have been through and will still be going through.... take the space and time and support that you also need. I'm delighted that you have both come through these first few days and wish you both a gentle and easy recovery. It's amazing what blessings arise out of the most unlikely situations. My husband and I are much much closer and our relationship much stronger as a result of my SAH... I don't know whether any of this helps... the forum is a great source of support all the best and love to you both x Quote Link to comment Share on other sites More sharing options...
Spadgie Posted September 20, 2011 Share Posted September 20, 2011 Thanks for that, Kate. Wise words indeed. Quote Link to comment Share on other sites More sharing options...
Louise Posted September 21, 2011 Share Posted September 21, 2011 Hey Annie, & a warm welcome to you. the detached thing you spoke about I had that and I think it quite common, Lynne mentioned Headway speak with your GP about it but honestly your not alone in it we've all felt that..denial... Lots of people dont talk about what happened I think you should so well done you for doing that, if you dont let your loved ones know how you feel then they're never gong to know so well done hun. said enough all just now take care.... Quote Link to comment Share on other sites More sharing options...
winter Posted September 22, 2011 Share Posted September 22, 2011 Annie - So glad you're here Welcome to BTG!!! I somehow missed the earlier postings when your partner arrived at BTG How wonderful of him to have found this site and you are now able to join in! I can't come up with anything that hasn't already been mentioned by all the previous BTGers. Just know we're all here pulling for you and your husband - and most definitely here to help you both through your recovery. This group of people, friends, have truly made my life more manageable, happier, and supported me through so many difficulties. BTG folks have been my life-line . I look forward to hearing more from you whenever you do post. By the way, I love your avatar - sweet, spooning bananas Hugs to you and yours, Carolyn Quote Link to comment Share on other sites More sharing options...
Sandi K Posted September 22, 2011 Share Posted September 22, 2011 Hi Annie, warm welcome to BTG! This is a good place to come for support and shared experiences. Lots of warmth and good people here. Sandi K. Xo Quote Link to comment Share on other sites More sharing options...
jess Posted September 23, 2011 Share Posted September 23, 2011 Hi Annie welcome to btg look forward to chatting sometime. Jess.xxx PS and drink plenty of water and if your tired rest. I ought to listen to that advice too lol. Quote Link to comment Share on other sites More sharing options...
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