Daffodil

Glad it went ok and hope the journey home went well.

Hi Tori, firstly I'm so sorry for the heartache you and your family are experiencing right now but you are doing all you can watching over your mum and helping her to heal and she will feel and know that love. Talk to her, put pictures up round her cubicle sing and just give it a bit of time to see how the effects reveal. Noone can predict the outcome as we are each different , i for instance had a grade 4 and coiling and EVD placed its a considerable ICU stint and like Win I also had a shunt placed at a later date but was fortunate not to have the infections others and your mum have had which does complicate and delay recovery. I now don't think in terms of recovery but more my evolution of adaptation that continues today five years on from my event The effects of all the drugs, the multiple operations and procedures she has had and especially the LPs she is now having will be leaving your mum completely wiped out and can be suppressing any ability to respond. I suggest keeping a diary and getting everyone who is visiting to note anything in it and also to just keep encouraging. In my quietest and stillest of times I still could always feel the love. Talk to your mum, let her know how things are getting on, play some music and give it time. Always hope to be had. Take care of you, she will want that as well.

Hi Andrea , sorry I missed this so I hope your cold has improved and you are recovering from that now. I had to have a second operation post my SAh , not to have a plate like you but to have a shunt put in so I know some of what you are feeling. They will really look after you in the hospital and the pre and post operative is very attentive at least it was for me but if you are worried when you are there then tell them, ask for someone to hold you hand as they do the meds, don't be shy. Its hard facing any operation and especially when you still feel unwell as we do post SAH but remember this is being done in a non emergency situation which is much better and the outcome is that it should improve life for you. So it's ok to be scared but focus on what the benefit of having the operation is. Also I had a friend who had a craniotomy and she had to wait before she had the plate replaced as well and she was said she saw it as a gateway to being able to wash her hair properly so hopefully that's the same for you too once everything has healed well. Good luck.

Hi Topsy, I also have a vp shunt and the balance was off for quite a while before I got it right, and even now if I do too much I will be face first and hopefully not onto a hard landing. Some tips with that first of all, take a stick everywhere, I still have one with me in my car and which I take it on longer journeys and always when walking the dog although I can walk unaided now which I am very grateful for my stick is important to my balance. Dont jump up or try to do any movement too quickly. Sit a while and then do things, think of a breath as a pause, so if you have to turn, take a breath and then turn, it really does help slow you down but also for the message to reach the brain, get some help with anxiety, be it taking medication, meditation, relaxation, walking, sucking mints, whatever works for you, don't suffer it. . I have come to the conclusion through this forum that head injury often triggers anxiety but also that the surgery for the VP shunt can really heighten anxiety as I haven't met one person who has a shunt who didn't have these episodes afterwards. I had counselling and it definately helped me and I meditate as well and learnt coping techniques. remember the fear is often worse than the doing. Phone your dentist and ask him or her to call you, explain what has happened since you last saw them and ask for their help and support so you can get into surgery to see them to assess you.. They will be used to anxious patients anyway and I know the first time I tilted my head back in the dentist chair I was so worried but my dentist was fab and I have had filling injections , dental xrays and cleans since then and I'm sure your surgery will support you and don't go alone. After your visit rest up. Don't me tempted to do to much too soon as it takes longer to recover and as Super Mario said pain is no good to anyone so go get it sorted. You need the pain gone.

Hey Andrea, don't lose that will as that is what has got you this far and as others have said you will feel better but it's a big shock and adjustment. Yes it's a hard hard process and it's not fast paced recovery and in today's world we like everything fast and fixed yesterday. SAH recovery will teach a different attitude to that and to listen to your brain and body and read the signals of what you can and can't do in that moment, and that will keep changing for a long while yet. i was 39 when I had mine; a busy working mum of two young daughters and I felt despondent when I came face to face with all these limitations and compared it to what I could do 'unthinking ' prior to SAH. Good advice is to measure progress not to how you were before but to how you were immediately post bleed. Keep a diary of your goals for each day but also to pour out your worries as writing it down really helps And pat yourself for how far you have come already. i didn't have weakness other than from fatigue and the muscle loss from hospital stay and surgery but had major balance issues,memory and cognitive deficits post mine and also didn't drive for well over a year so I got in touch with Headway in my area who were able to offer me some outreach services which was amazingly helpful to teach me new coping skills but also to boost my confidence. so will you improve?. I would place money that you will but be kind to yourself Andrea, no sprint to the finish here more of an ultra marathon!

Hey Jan. At two years I bought a picture in a charity auction for my treating hospital which is a picture of small jigsaw pieces being carried off away from someone's head and birds flying back with other smaller but different shaped pieces. It can only have been drawn by someone who knows how that feels and you have just described it beautifully, it's how I felt too. keep on keeping on. Well done for all that you have overcome. Keep rearranging the pieces, it may make a lovelier picture you never know. Daff x

Sophie, bravo for writing your story and sharing as it will bring comfort to anyone else bite your age and otherwise. We will try and help you understand some of the feelings and changes you may have since SAH as we will have that in common but age will not be Something we share! I i was 23 years older than you when I had mine! Please do ask if you have any questions about how you are progressing and I hope you are doing ok. You may also want to get in touch with the charity Different Strokes who help young people who have had strokes which an SAH is considered to be. Take care x

Any change in symptoms or escalation shouldn't be ignored. As we can't offer medical advice I think if you experience a fever which is getting worse you should get it investigated. It's good ER docs checked you out and Gave you the ok and I'm sure they will understand and will be happy to check again (and again ) if you need it in future. your immune system will be all over the place right now and your brain runs the show dont forget so some signals go haywire so rest is really going to be your friend but it's natural to worrry as there's very little out there to say what you should feel like and it's different for everyone simply put you are going to feel pretty rubbish for a while yet, I'm sorry. and yes that's going to feel scary, make you fearful but my best advice is that if things feel awful but aren't getting worse then often it's a case of finding a way to sit through that, finding a distraction, resting and giving the brain a chance to heal. Do do you have help at home? Try not to do too much or to pick up where you left off. This is a start slowly and slow build from when pause was pressed.

Hi Gemma so I have a small annuerism which is untreated but monitored and i also have a neck on my treated anneurism which caused the bleed , so is described as 'not fully occluded plus my shunt'. My surgeon was happy for me to fly after my first angiogram confirmed state 6 months on but i didn't until a full year later more because I just physically could not have coped with it earlier . Flying uses a lot of energy and places the body under quite a lot Of strain so that has to be mums call. that said I know it's your wedding so mum will want to go but I am going to guess it may be a bit of a struggle to get insurance. Based on my description of above and having a shunt I still pay what I think is a ridiculous amount for a weeks metal cover and I have been refused by many companies I but would not travel without it and that's despite having had yearly MRIs and remaining stable. I really wouldnt suggest mum goes without it. If you can get her cover, have surgeon blessing , know mums up for it then just make sure you book airport assistance, make sure she drinks plenty of water, take good earplugs, rest straight after flights and make sure mum has plenty of quiet space to retreat to during the stay and then just enjoy your day. She will want you to.

Hi Stanton, same as you I had a grade 4 in 2012 and luckily got very prompt medical attention so whilst I spent considerable time in hospital and have hydrocephalus and shunt like Win life has improved since then and changed and improved immeasurably . It's a bumpy road for sure but one full of learning , curiosity and joy for the most. And on the days that are hard? Well my short term memory is rubbish so I soon forget about them! Glad you joined our little gang. I'm glad you are doing well and to answer your question yes I think improvements continue beyond the first two years, they aren't as dramatic maybe but it's like little switches being flicked and suddenly you realise you are doing something that would have been beyond you a year ago. So progress is alwaysbest measured from when you were i hospital and then you will see how far you have some. And keep on keeping on!

Oh bless you, like Clare I was still in hospital for quite a while after but the pain was dreadful even after discharge and I found it tricky. If the pain gets worse, changes or worries you then don't hesitate to seek help or advice from your treating hospital. Things i I found that helped me in the months discharge after in no particular order. eating regularly and not letting myself get hungry keeping my fluids up sticking to my meds plan..don't be a hero ! keeping warm sleeping in a more upright position regular resting Very gentle exercise and stretching movements. My mobility was very bad at first so only very small amounts to build up. low exposure to technology, short bursts setting myself daily goals a heated wheatie bag ( not sure how I explain that but it's a fabric wheat filled bag you put in microwave for a couple of minutes) or hot water bottle on the lower back i also used some essential oils to help with my pains, I am an aromatherapist outside my day job having studied it pre SAH so you could seek the help of someone to mix you a blend , I would be happy to suggest by Pm if you can't find anything You are very early days so go steady with yourself and don't expect yourself to revert back to how things were. This doesn't often play out like that. Give it time.

Hey Jan, lots of great responses and I know you are just seeking some reassurance and that I think is absolutely normal for the two year mark, I hope I can can add something. At that time point I had put much of the horror and pain behind me that it was probably only then that I did start to take full stock and realise what my new landscape may actually look like and grieve a little for what was lost. But that said it has constantly changed, shifted and improved since then too and that's ok too so it's not a static thing, it's just not as rapid change As an example for you, yesterday I got back from a weeks holiday with my kids and although I am wiped out from the effort of it I had great holiday in the new style of Daffodil. . Now I find holidays really hard these days if I'm honest , all that travel and change of routine and the first time I did it post SAH it was dreadful. I just couldn't do anything I would typically have done,I was exhausted and every pain filled me and the family with dread but we just kept on trying a little more and testing possibilities and each time it has got easier and I have found a little stretch in the limits of what I can do at that moment and I have learnt more to notice my signs to rest so I find I need less of it. Does that make sense? . Yes by the Time I get to the passport hall on the way home I am a little broken , my balance has completely gone, I need my stick and I know I'll need the afternoon in bed but finding that way through to still do things that make your heart sing is worth it. A friend who also happens to be neurophysiologist gave me some great advice. She said you now have a different set of traffic signals and timings and have to know when it's worth going through an amber but to always heed a red light and never run that and it's advice I listen to and remind myself of on the days when I know I push it. So 'is this it' ?, no never in my eyes but your playing field is different so find, explore and be curious about new ways to play and make the best of each day and just be kind in the process especially when the day may be harder. You're doing so well Jan. We all are! X

Steve, I am hoping you feel a bit better today but if the balance and nausea remain I would strongly suggest you give your neuro team a call and have a chat or see your GP if they are good and know the situation. You had an EVD / hydrocephalus with your SAh so any sudden change should be discussed post discharge but often the feelings are is just through just having done too much. And yes learning to say 'no' is a good recovery tip.

Steve, you are now officially part of the slow movement and that's not all bad, like Win said go a little slower into things. Doing that We get to notice and enjoy the momements and not press so fast through life bug also notice our signs earlier when we are flagging. Everyone has reassured you that that horrid fairground ride feeling is a signal that you pushed past your energy limits the day before and we have all done it and continue to do so. I'm five years out and I spent my Monday feeling exactly like you did after having done too much at weekend and then receiving an emotional upset. Too much stimulation, not enough rest, over exertion, any one thing can tip the balance you think you've got to and literally knock you on your derrière and then also just when you think you have a steady rate something will zap your energy bank unexpectedly and can have the same effect. So you did the the right thing, batten the hatches down, rest, drink water and fish and chips sounds like a Fine prescription , fish for the brain and potatoes for the body. rest now. Tomorrow another day.

Hi Chris, well done for dipping your toe in the water of the forum and don't worry about making any mistakes as any of the moderators will help and also answer questions if you need a bit of coaching or are struggling to do something. like Sharon and Sami I too hit a 'wall' in the months after my hospitalisation and SAH. I had tests at my doctors who diagnosed PTSD and so I had counselling but also I was fortunate in that my employer also provided a service where we could access a counselling helpline so I phoned that whilst I was waiting to see someone on the NHS. I think main thing is to talk about things and be honest with yourself how you feel, if you need to cry then cry, if you need to sleep then sleep. The early months is actually all about being kind to yourself and acknowledging you can't force yourself to bounce back into the previous moulding you had. Now is about change. Age means you have greater exoerience to draw on, you know that other calamities whilst awful and distressing that have no doubt happened do not stay forever but their effects will always leave their mark. That's your bleed. You need to ask for some help to deal with the black cloud and do what's right for you. Tips i think That helped me. get outside everyday and just notice and have some still time enjoying the spring. find a way to relax and settle the brain. I do mindfulness meditation but anything that soothes you will help. set yourself three small goals each day , not biggies but something to do, it could be as simple as folding the washing write a night diary, get a lovely book and write in it before bedtime things that made you smile and anything that worried you. Track your progress. get a good sleep routine look at what you are eating, post SAh minerals go haywire and I think a lot of the depression is the chemical inbalance, you can 'tell yourself' all the right things but you still have that feeling so eat good foods that help. I give myself a gentle shoulder massage each night with an oil which fragrance I particularly like and is good for depressive which is rose but not everyone likes that odour but maybe find something that works for you Chris just be kind to yourself here. You haven't done anything wrong, you wanted to go on holiday that's understandable, you could walk o you thought why not . Your brain went this is all a bit too much too soon, so start again, baby steps and find your new balance. good luck.

Great to hear that hubby is eating but sounds like his voice has disappeared. How is his cognition generally, is he more or less attentive, has anything else changed? Is he able to communicate via a tablet, there are some good apps now so you can ask basic questions and just tap for yes no to help aid communication when there is no voice. I would ask for speech therapy assessment and also check with his doctors to see if there is concern. If he feels he could speak but can't then that needs checking out but that's just my opinion.

Im just going to add this link too which may help https://craighospital.org/blog/tips-to-be-assertive-not-aggressive?utm_content=bufferc12f8&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer which is tips to being a successful self advocate. Its always hard to speak up and ask for help but I think it's one of the best habits you can learn post brain trauma especially if it's not something that sits well with you. Practise and be assertive about what you need. A happier you will be a healthier you and as Win says ' no stress' and we all listen to Win. Fabulous that you are finding the steps you need to get your recovery on a good path. We wish you luck !

PJ. It is so hard and we all know and feel your pain. i can't in all honesty understand how someone could think you could jump straight back into work so soon ...12 days after is beyond my comprehension but I note that in the US right now there is a big movement to educate people about the effects of concussion etc so it's probably lack of understanding about what a brain injury actually is so maybe it's a case of just stopping and saying to everyone 'let's get back to the drawing board'. You haven't drawn breath since it happened and you need to work out what is possible for you and realistic, what your limits are for now and to pace yourself with the things you do need to do each day. Some of that starts with you knowing and establishing that and sharing out loud that you need help to get a more realistic pattern of work and living. Maybe people see you coping and think you're doing ok but now they are noticing it's taking effect it's the time to take postive action to change things for the better. what is your company like? Are people going to be supportive if you ask to sit down with them and discuss a more phased return, is there oth help you can ask for. your doctors, go back and speak to them, ask them about support groups, what help is available and explain how hard it is and the issues you are having. often people don't get the help post bleed and discharge without pushing or asking, that's sad but true. I had amazing support but even then but in every instance after discharge it was left to us to research it ourselves or battle to get access to to help I needed so I would say turn your energy and frustration at what might help you open a door here. Its ok ok to be angry, and scared and you need to talk that through and process some of that. life changed for you back in January, there's no going back but go forward and start giving yourself the kindness and help you need to recover. i wish you well.

Kerryn, if it makes you happy to go then go but don't pressure yourself to do everything you would have done before. Maybe just plan to to do something each day with the kids in the snow , have rests in the afternoon but don't assume for now you'll ski, just wait and see how you feel when you get there. altitude can be odd, planes obviously adjust the pressure but being at altitude wears people out fast anyway because the air has less oxygen so you may need to pace yourself even more. i haven't returned to skiing that was one thing ruled out for me by docs, that and bungee jumping which I was never going to do! But that's due to shunt. I think that the peace and the beauty of the mountains may be a good tonic and a time for family.

Kerryn, welcome to BTG! Not the usual post run endophins which you would have preferred I am sure but glad your wife acted so promptly and the doctor was diligent to get it checked, it will help in the long run I'm sure that you got such fast treatment. . Great you are keeoing the fluid levels up. Little and often with your efforts, learn to pace at things and then rest after everything but if you are a runner you should find that makes sense, apply that logic and it should help you. Btg i think plugs the scary uncertainties that sits with us post bleed. There are lots of odd and unfamiliar sensations, different pains and when they happens it plucks at the fears we all naturally have, but that will Improve and come here and ask and someone will usually be able to share an experience and offer an ear and gentle reassurance. Oh and one comment on the kids, mine were similar age when it all happened, don't hide your need for gentle recovery from them and be tempted to be a super hero pretending all is well. Explain you are still a bit broken and ask them to help you, that sometimes you will need extra rest, extra quiet, but if they can help with that then it will mean a faster repair process for daddy. It also makes it less scary for them as it's behaviour to be expected even if it's unusual to you pre bleed. Suggest and offer lots of cuddles, there's healing magic in that. Take care, go steady.

Jen, I have deliberated about saying this so early post his SAH but after speaking to my fellow moderators they agree I should say something. You will need to investigate his eligibility to drive after discharge as He has had an EVD ( drain) placed, the current advice excludes him from driving for 6 months or until his neurosurgeon signs him off. That was my experience anyway ( I had EVD and later a shunt) and there's a lot of Threads on this site clarifying people's situation so it's definately worth speaking to his employer early on and keeping them up to date with progress etc but advising DVLA. It counts from when the EVD is removed but the DVLA are notoriously slow to process so start reapplying early to get it reinstated. I know now that's probably the last thing you want to hear but if you have some information then at least you can start to plan for different scenarios. daff

Jen, sorry to hear about hubby but glad he is doing ok. i lost a lot of weight in hospital and was told the brain uses masses of energy to heal so it 'steals' nutrients to divert to that,make sure he has plenty of good food and regular high energy healthy Snacks in his bedside locker which he can have if he has appetite. If he's walking remember all that effort uses even more fuel so he'll just burn his calories faster. The back pain is not uncommon either post bleed, I certainly experienced that and can't tell you if it was due to the lumber punctures they did to confirm the bleed or if it's the blood dispersing but it is a very uncomfortable feeling. But like anything if it gets worse anr different he should raise it with his team. Don't ignore it, make sure it's noted. im sorry to hear about money worries, that always complicates matters, and I agree with super Mario, investigate now what help you can get. Apply for everything you are eligible for. . he should get his statutory sick pay and I would hope with him having worked there that long they will look to be considerate of him and his family . He is protected somewhat by law. everyones tale is different, he will need to learn a new pace but I don't think any of us can tell you this is going to be a fast thing. Take care and take time for you too, ask for help and please ask here if we can help you with questions or concerns.

Hi MatJaz welcome and it's so great that you have Found help amongst the experiences shared here. it take time to heal from this. If you think about it your brain rarely gets to rest as it's busy controlling our bodies and thoughts and all the other amazing functions , then on top of that we ask it to pay attention, do multiple things at once and have lots of stimulation from noise, lights and sounds. It's no wonder it shows us the symptoms of nausea, dizziness etc, it's the only way to say 'stop, I'm still trying to heal' So rest often, try and put in plenty of breaks in the day when you can that you do nothing, just have some silence and then go on when you feel less 'pinched' . It's call pacing yourself but if you learn those baby steps now then in time your pace and step length will grow and you will need less rest. get a nice routine for going to bed, drink and eat well and healthy and smile at the people you love and ask them to just sit a while with you and watch the world and the clouds move across the sky.. That's a good feeling when you are healing. go steady and slow in Slovenia.

Posting for you a link to the brain injury care services and associations in each province In Canada which the charity Brain Injury Canada have on their site. They may be able to help you find an advocate to help support you much like we have the Charity Headway in the U.K., https://braininjurycanada.ca/acquired-brain-injury/provincial-associations-and-care-services/

I just wanted to add that of course the grade of the bleed is a consideration in the recovery but it doesn't give a totally predictable outcome. Win and many many others on this site have shown that. I too had a grade 4 and hydrocephalus and now have a shunt but I am now back doing some work, I live independently with my family, am mobile and drive short distances but it's been a long Haul. There are such a lot of variables which affect recovery; where the bleed originated, how quickly you were treated, age at time of bleed, complications, previous state of health,; there is no classic trajectory so no one should write off the opportunity for his progress by stating it's unlikely. HArd, yes, difficult , yes, long, definately but not impossible. YOU know your husband best, YOU know what he is capable of and would want so use that as your guide, he is showing great progress withe th swallow so make friends with your insurance company, find an advocate at the treating hospital and start to work out a plan together. What would ' good' look like? is it coming home? is it rehab? make a plan of action and then get everyone working to that goal and don't accept doubters And naysayers. YOU know your husband. Don't make it easy for them to sideline him. The recovery is the longest and hardest part of this andmost hospitals don't see that, they just see a 'fix' of the bleed. Get him into a rehab unit that specialises in stroke/ neurological events and see what they say and can do. If your husband is cognitively responding well with you then it shows his brain is doing what it can to heal and remember it will transfer its energy where it's needed to do that, which means that his muscle tone and physical ability to do things will be reduced as the brain steals the nutrients to heal itself and he won't have been having much food anyway and it takes a huge amount of energy. Good food will help thats that's for sure but keep hope . Daffodil.