Daffodil

Cat. So sorry to hear about your mum and so hard for you to watch and wait to see what happens next but I agree with Sarah Lou and Tina that it is promising that she is responding but every little thing and action is exhausting. Your mum will be worrying about you too so don't worry too much about being strong for her, when I finally was well enough to have my kids come in ( they were much younger than you ) it was actually a relief to just know they were doing ok , yes awful to see them sad, worried, distressed but overall ok and that's all us mums really care about , knowing that you will be ok. So squeeze her hand and let her know that your there for her and you are ok. Your mum is previously fit and well which will help her but it is going to be a slow time over the coming months as you begin to see what progress she will make but progress and improvement will come , have hope in that. My experience taught me that the brain has an immense capacity for recovery but it needs protection from over stimulation whilst it does. Your mum needs to be getting good nourishment ,lots of love, fluids, encouragement and time and you can help make sure she's getting all of that , and yourself too whilst you are at it. Celebrate with her the small things you notice, surround her with reminders of what she loves. I had pictures plastered over my bedside of my kids so nurses and others could ask about them and point me to them for inspiration, I know she can't make out everything with her eyesight but it sounds like she understands. Very Gentle massage with safe oils is nice, my mum did my feet and hands for me when I was very poorly and it really helped comfort me but she checked with my ward and consultant first and avoided any cannulas etc. The neck pain may be due to blood dispersing but if she is in lots of pain then be her best advocate and get them to investigate, like Win I had hydrocephalus and bleeds can occassionally cause rarer complications which may add confusion. All Strokes are devastating in their impact but I have met some amazing people who have recovered from locked in syndrome and paralysis. My family were told I would most likely not survive and if I did would be severely disabled, I'm not, I'm not the same as before but you can't preduct anything so please take each day as it comes and keep hope and try to smile through the tears. As things go on you may have more specific questions and hopefully that's where we can help as someone will have had that experience . Lastly I suggest you contact a local headway when you ready to ask for support and help, they have good experience and will help you find a local support network. Best of luck and sending best wishes to you mum x

Hi Gemma. Welcome to BTG. I'm glad you got help so quickly and they treated you well but what a frightening time for you and the family. Take things easy , your motivation hopefully will improve over time but you've had your stent surgery, the drain surgery, then the shunt surgery on top of a bleed, that's a lot for a body and brain to contend with in recovery and healing even for someone so young and fit as I am sure you are. There are a few of us on here with shunts after developing hydrocephalus post the SAH , it's a rarer Side effect but it adds a new state for the recovering brain to adapt to as its a life long condition managed by the shunt. You may want to contact SHINE as they will send you alert card for hydrocephalus , I find it reassuring to carry it. Has your hair grown back yet? I know you will be keen to get back to work but take it slowly , maybe ask if you can just go and sit in a class for an hour when you feel ready and see how that effects you. Cognitive concentration is exhausting initially as can be lots of sensory noise, both of which you have a lot of in teaching I imagine but you'll find a way. Good luck with neuro appointment, write a list of questions you want answered. Glad you found some comfort here.

Alison, You asked ' what to do with myself ?' Here's My experience of what can help when our life speed dial gets turned down in the blink of an eye and everything changes. Congratulate yourself on every achievement no matter how small. Try to set small stretch goals each day, it could be really simple like how many glasses of water you are drinking but having a sense of accomplishment in everyday tasks is good in my experience and helpful early on but don't worry if you don't meet them, there's always tomorrow. Pace yourself and then practise being very good at this new slower speed that you need to keep to for now. You'll find your new rythmn in time, it may be different to before but try to embrace it and find something in it. Look up, look around, notice what's happening, what you see with season changing keep a diary of how you feel at this odd time. Read something you've always wanted to but in small bursts and only if you can. rest often, eat regularly , drink plenty. Phone a friend and ask for company if you fancy it, not if you don't, don't sweat it. See if there is free bus travel whilst you can't drive or local support to get places if you feel up to an outing out. Smile daily even when there's tears, there is lots of tears!!! Main thing though is Be kind to yourself. It wasn't a broken leg, it was a bleed on the most crucial element of your body and self and so that deserves some TLC in my book whilst you navigate your recovery and see how it pans out for you.

Hi Alison , welcome to the group and I hope the extreme weather that Canada can offer is releasing its grip so you can get out and enjoy some warmth in your recivery but I suggest a hat if there is still a chill in the wind. I too was your age when I had my SAH and had to defer celebrations for my fortieth after having a shunt placed later in my recovery and instead ended up celebrating the big 41 but in a more muted fashion than my partying of old so you can plan a new celebration of more than your fortieth now and look forward to that ! Take things steady, it seems most hospitals they discharge most pretty quickly after an Sah Unless you had a procedure or more complex bleed with no time to adjust but all of us are left struggling to understand why this bleed on the brain makes you feel so blurgh and not knowing what's normal or to do and frankly pretty scared. You have had good advice already, read some older threads and ask anything that worries you. As Tina says it does get better and always look forward if you can. Do you have family who understand and are helping? Hope so. Take care

Miss KDK you look like you look on the sunny side of life , hope it shines on you this year and I'm glad you are making good progress since your SAH. Keep it going , nice and steady does it but on those days when things just ain't what they used to and don't make any sense feel free to stick your head in with the 'really, does it do this? Why does it feel like that? ' questions that may be bugging you, I was 39 when I had mine and three years on I have a semblance of something that resembles elements of my old life but the feeling different whilst looking the same takes some adjusting to. I have said many times that it is like similar effect as when a cup of coffee is spilt on the motherboard of your laptop, ever seen that done? I have, oops . So after it dries out sometimes can be turned back on but it just never works at the same speed and some keys do different functions randomly and often it will just shut down unexpectedly for a quick reboot....that's just like me post SAH but I figure that we are still the very very lucky ones as we are here and doing. Take care.

John, you will have helped that lady today. Bravo! We are the fortunate ones, hard though some experiences are but just to be seeing that sky and for you to be able to reassure that person is wonderful. I was with someone when I had my Sah whose partner died from an sah and she recognised what I described and what was happening and was the reason I received such prompt attention. Since then we have met a few times and she said it helped her make sense of her loss a little more but also comforting to know a bit more about it. Strange how life unfolds , surprises and challenges us I haven't welcomed you to BTG , we share a SAH anniversary , also international women's day !! Mine was 3 years ago on 8th March. Take care John, steady, easy does it and keep looking up at the sky and enjoy the moment.

Hi Sharsky, sorry to hear about your Dads recent ordeal. Your description took me back a bit. I also had a grade 4 and then subsequently had to go back and have a VP shunt placed when the hydrocephalus reappeared and they couldn't control it with lumbar punctures and yes I also suffered a LOT of sickness after the shunt was placed . As Super Mario said it may be the shunt may not be at the right setting for him but also shunts can overdrain sometimes as well so if his sickness continues they might decide that needs to be checked. We can't advise you medically so best seek some proper and knowledgable advice from the neuro team. I have learnt from my experiences that Shunts are put in at a factory setting recommended based on the persons size/ weight and some other factors in order to trigger draining but that's not the right level for everyone, it's wasn't for me and ii was pretty miserable until i got to the right one. I knew it was brain related and CSF fluids so I pushed for changes to my setting ( although it was pretty obvious as I couldn't even raise my head) as I could compare it to my reaction post lumbar punctures when I had to have pretty significant intervention to manage the sickness each time including sub cutaneous intravenous anti sickness meds because I reacted so strongly if my CSF pressures went too low for me. I became quite familiar with signs of low or high pressure during this period. Don't forget though that he is also recovering from the effect of having been accustomed to having a unusually level of high pressure on the brain from the hydrocephalus and it's now being managed at safe but lower levels but this takes a while for the brain to adjust in my experience plus it's healing from SAH. It'll improve in time. Anyway I Definitely suggest you contact the team who treated him and ask them to listen to Dad and investigate rather than trying to battle with the sickness, I would really hope there is a specialist nursing team you could contact to chat through , I also had to have anti sickness meds for months after shunt was placed until we finally established my good setting, it took some time but we did get there. Does he have any other effects or symptoms that increase with the sickness like dizziness, loss of words, head pain as that could indicate if it is connected to the shunt or not. Win gives good advice to cope with sickness though , small meals, small bites, don't allow him to get hungry if you can, I had build up shakes, not nice but helped keep me topped up, also don't lie completely flat and always try to raise up from sitting or lying in very slow gentle stages until you get used to the way the shunt drains, no getting up quickly. Good luck and Pass him our regards.

Win is so right. What a clever and quick thinking daughter you have. Also there are some great charities that help kids process traumatic events if she ever needs to talk in future. My girls tiptoed around me for quite a long time afterwards and were easily scared until they could see more of the 'mum' energy and gumption returning but they now have a lot of empathy and care for me and also others so think they learnt a lot from the tough times. Take care Sammy. Say bravo to that little angel of yours.

I think most are fine super mario but the vp shunt model I have uses a magnetic adjustment so they suggest that whilst it should not cause any issue with the scanners it is advisable to get patted down. My shunt is fine in MRIs so sure it would be ok but I know some have to have settings checked afterwards , it seems it all depends on what model and valve you get!! Us shunt gals eh?

Sammy, I was like you and nervous more about the shunt and flying than the SAH if I am honest then I came on here and Super Mario was flying off to quite a few places and I thought' I'm going to do that' , I used to fly lots and I did for the first time last April which was two years post SAh and a year and a half after having my vp shunt placed. It was the first time I felt well enough to be that far away and also cope with the effects of the trip. It was a little odd, I'm not going to lie but no different effect to low or high pressure weather days if you are someone who gets affected by that, some people don't. I am flying again in a couple of weeks and feel quite relaxed and looking forward even. One thing, insurance! This is hugely important in my view. Yes get you health insurance card for Europe but the cost of a declared condition which hydrocephalus is and the anneurism , surgery and coiling will bring a big premium, and you ideally need to be a good few months out from a hospital stay or investigation otherwise costs are higher. I used staysure and am happy that I am fully covered if I had any shunt malfunction which although extremely unlikely does need to be considered. I didn't want my family ever to be in a situation where we weren't covered. Lastly if you have a magnetic shunt valve then you can't go through the scanners. You will need a medical note from your doctors and I also had this translated into the language of the country I visited for the return trip home but everyone was lovely. No different to those with pacemakers really just rarer! Feel free to PM me.

Hi sammy Welcome to the group. Glad you found the site and hopefully you will get lots of help here and find some comfort and answers as I have since joining. You share a Similar story to myself. A pretty long stay in hospital and VP shunt to boot and it all takes a good while to settle and adjust to and achieve a state that is steady. In fact that's my ambition even now three years on, I hope for steady days and when they come round then I'm happy. Regular routine in the day is very helpful especially when you are returning to work, if you add something in then give it time to settle and try and do things a bit at a time. Good luck with it. Don't Rush is my advice. I didn't realise how much my confidence was knocked after the time in hospital and post bleed but with time that has improved but I still don't enjoy busy social stuff now when I used to love it but I enjoy oth things more. Others will be along to welcome you, ask anything, the strangeness in recovery post SAH is all something we can help you understand I hope. Take care

Mandy , just to add I agree with sub on this point, there is a tendency to stick rigidly to a return to work plan but get agreement now if you can for maximum flexibility in how you achieve your goal as it will help in the longer term. I had a couple of steps backs when I hit a wall and had to reduce hours to be able to build them back up again but overall this has allowed me to make good progress. It has taken a long while for me and having consolidation for a few weeks after every increase of hours is the ideal if you can otherwise you don't have time to adjust to the extra effort before you up it again and that can prove tricky in my experience. It is tiring and remember it's also about balancing it with everything else, home etc, no point getting the effort into work and being fit For nothing else . I think if I am being completely honest that this is a pretty accelerated back to work plan and I've seen a few in my role but that's not to say it's not achievable and if you are comfortable I wish you the very best with it but do speak up if you start to notice I'll effects and possibly make the suggestion of a different pace to achieve goals. I appreciate your employer is being patient but if they have Occ Health provision then they probably have insurance and would probably agree it is far better to work at a steady pace and get a better long term result of a fit employee. One last thing. In my early days back at work I would work 30 minutes then take 5 minutes of just quiet and silence and drink water. Didn't neceesarily go anywhere, just put my ear plugs in and it meant the elapsed time was longer to achieve my working goal but it allowed my brain breathing space .I still do that now and my colleagues know I will occassionally step out to go and sit quietly , or we all take a quick break so I can then resume and join in without overloading so it's created some good habits in all of us.

Hi Clare. I used to Write down goals at the start of each day and tick off when I did what I hoped to that day, as Super mario says, start small and celebrate everything, yes even getting up, getting dressed, it helps you track what uses up energy and brain power differently to how it did previously but let's you look back and see progress and what you make. Use a little book that makes you smile! I believe the brain undergoing healing requires massive energy and space because it's trying to run the rest of the body at the same time so learn what are your signs that you are overdoing it in the early days and that will help you in the long run. You had a bleed and a major brain procedure with the EVD so Feel no guilt at your sofa time. Yes stretch, yes do things but in moderation with rests in between. Be kind to yourself, that's my mantra. I'm sure in your role you require great empathy. Turn that on yourself. I definately think it's okay to join the slow movement post a bleed on the brain and investing in your healing now and finding a pace that helps support your return to health is worthwhile. Look forward. You may do things differently in future , you may not but only time will tell, you may regain everything you did, you may find things have change, you may choose to do things differently, you may learn you want different things, it's all ahead of you and take your time. Take care now and keep drinking the water!

Teechur. I am not sure any of us are more accepting than you or that we don't rail at the changes just as much but I look on my enforced lifestyle change differently that's all. For me it didn't matter how much I hated what had changed, what I had lost, I just had to face up to the reality of my today and what I can do and manage without burning out otherwise I was no good to my kids, my family but more importantly to myself. I needed to try and work within my new limits so that I could enjoy what I could actually do more. Does that even make sense? The key I think which your therapist maybe didn't say is be kind to yourself, it's ok not to be able to do everything you want to do. I'm not going to tell you to write the letter, to mourn the old you , you have to do what is right for you but I do know this; part of our brains got damaged in the bleed and from that moment things had to change in how we do things. It can't go back only forward from that point . It's no different As you get older, you have to change and adapt as you age, grow, learn. It's not about giving up or not being strong enough, it's about being able to accept what you can't change and work with the best of that. Teechur , my advice as always is to try and find joy and achievement in what you can do now and are doing well and pat yourself on the back rather than constantly looking back . Hey I used to be able to drink all night and fit in a size 8. (Us4) and still do a full day's work but I know bleed or no bleed there's no going back to those days!! I don't mean to be flippant, I don't belittle how you feel at all as the loss of our 'known' is hardest of all but there is a way through and if you can maybe stop pushing and slow a little you may be surprised at the relief you may get headache wise. Best wishes Teechur. PS the weather pressure change wreaks havoc with me also, low pressure rain is the worse, I have no answers or advice for you there other than at least we know it happens and it does always pass once the weather changes again.

Second programme is now up. Worth a listen , especially for any carers as its sharing strategies for recovery and discussing ongoing rehab and treatment and healing post stroke. Lots of hope and increasing knowledge about Improving long term outcomes.

You need to get your confidence back too Chris, to relearn that it is ok to go and do something for you and not be 'on call' but it's hard to break the habit. So don't beat yourself up about today, I imagine there was some down time in it and that's ok and as macca said you did some stuff which probably helped you to just get it done without half an eye on something else. Fishing will come, promise and far nicer to be sat in the warmth of the spring sunshine yes than the cold damp day it was today. Baby steps. Glad Annie is doing ok at the respite, you pleased with it?

Happy popiversary. Mine is following yours on March 8th, also three years so we have been in step. Like you thankful for the opportunity to live.

...from stroke to brain attack. There are two, listen again, programmes on BBC I player about strokes and the effect including SAH if anyone is interested . I have listened to the first part and found it very interesting. Some consultants are interviewed that I have heard spoken of highly on here and McCrum was treated at NHNN as I was. Here's the blurb .... Robert McCrum journeys into his own brain to understand more about stroke. Ever since he suffered a severe stroke in 1995, Robert has been living with its consequences. He says, "It's one of the remorseless side-effects of the affliction that, if you survive it, you will live with its after-effects and the conundrum about existence it poses, for the rest of your life." The demands of an ongoing recovery still have to be met. This two part series is a reflection and continued discovery, twenty years on, of Robert McCrum's condition. Producer: Melissa FitzGerald A Blakeway production for BBC Radio4. The second one airs next week . I shall be listening in. http://www.bbc.co.uk/programmes/b0540b3p

10 weeks . Time flies but then drags doesn't it ? Lovely to get the report of how you are doing. The speech, balance, sleep, loss of words(aphasia) is so so common and time will change and heal you and hopefully improve them all for you. Your Hubby sounds lovely and amusing and a great support but I agree it is scary for all concerned the 'first' time and to be honest my love life even now is far from what it was prior but I am hopeful given the right time of recovery for me I will eventually regain previous form! Some Tips from me. When the words go, rest. It's a sign you are over exterted, still is for me. Try to focus on one thing at a time and build in the siting down and breaks into what you do the early days, make it a habit. So peel the potatoes , sit down, yes it slows the task it but it really helps. Sleeping propped up to sleep helped my back pain , a heated Wheatie bag and a gentle back rub( hubby?) wss helpful too as I also have a level of hyper mobility but I took ibuprofen right from outset , it was prescribed by my neuro team to balance with the other pain med but do check it out before hand with Your gp.

Slowly does it Jane. No rush. Great about the other two little chaps and that the op did what it was supposed to and I am sure you will be able to apply some of the techniques you learnt post SAH to help you gently reduce the effects of The small stroke. Hopefully as you were being monitored you got the drugs you needed straight away so Im sure that will help. Well done missus. You have been very brave indeed. Bravo!

Chris. So pleased for you and enjoyed your blog posts, it will help others. you know I like a little blog myself from time to time, has helped me ' share' think that's a good thing. Take care, hi to Annie.

Janey. Positive thoughts winging your way this week, I hope it all goes well. The silver lining is if they are angioing to check the others at the same time as coiling you it means you only have to coiffure the bikini line in readiness once

http://web.behindthegray.net/index.php?/topic/2515-driving-dvla-upset/?hl=driving Here's that thread I mentioned. Best of luck

Hiya rob I too had a bit of a mare re- applying for my license. It ended up taking another two months on top of the 11 I already had surrendered( reset my clock after second op to put in shunt!! ) .Very hards as its so key to getting some of that normality and independence back. There is a thread on here which I'll try and find and post. Thing is unless they get the all clear from your consultant on medical clearance after the six months then they will wait, and wait , and wait...I ended Up having the luck to speak to my neuro nurse on a check up who kindly went out of his way and Agreed to put in the hands of my consultants registrar If the DVLA would send it to him direct and that finally sorted it for me but only cos he took pity on me but it is a farce and the process needs changing which is why I signed this petition which Headway are backing http://epetitions.direct.gov.uk/petitions/74274 So sorry no real advice. Keep chasing u till you get that letter saying it's ok. You can't go ahead and drive is my understanding as until they reinstate your licence as you can't be insured so you are a bit in limbo. Chin up, it will be back. Keep pushing hard and hope the recovery continues to go well.

Hi Carolyn. What a shock and an unpleasant one at that. I love that you have retained some sense of humour and fun as well despite the new worry. Dr Wang sounds like a good guy, someone worth placing trust in. I imagine that this procedure is going to become more common place in treating SAH and aneurism in the future but you are at the start of that curve , going off piste if you like and carving out the route that one day will be familiar to others. A trailblazer that makes the path a little easier for others to follow. That is a courageous but generous thing to do. Whatever you decide it will be right for you and we will help you whenever And however we can. Keep smiling and singing.