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Daffodil last won the day on June 25 2016

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About Daffodil

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  • Biography
    Mum of two daughters, married living in leafy buckinghamshire. I had a Grade 4 SAH and presented with acute hydrocephalus in March 2012 when I was 39 but the bleed was was successfully coiled ( just a teeny neck left) and a drain fitted to balance fluids. I spent a long 7 weeks in hospital before discharge with a fair stint in HDU . Unfortunately my hydrocephalus reoccurred post the SAH and I was readmitted with flashing blues and ended up spending another 4 weeks eating the hospital food and having an adjustable shunt placed in July 2012.

    Now nearly four years on and life is more steady for me ,I'm back working part time for a large consulting firm in HR strategy, my neuro folk check my coiled and the second uncoiled anni yearly and despite there having been lots of bumps in the road with some grey days ( excuse the pun) throughout it all this forum has been a very helpful and reassuring place to come for help.

    I'm mostly enjoying some better days now and am now privileged to be a moderator. I also started blogging whilst in hospital having my shunt placed and still blog occasionally about my experience .
    If you want to read my more Personal account of my SAH recovery you can find it at http://popgoestifty.blogspot.co.uk/
  • Location
    Bucks, UK
  • Interests
    Swimming and baking
  • Occupation
    HR Consultant
  • SAH/Stroke Date

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  1. Hi Maeve, i am very sorry to hear that your mum mum passed away and I am sorry for you and your sisters loss. The effect of an SAH are different for everyone but it is a very sudden event and in that it has the effect of any sudden life threatening trauma . I read a surgical view early after my discharge that a SAH is a "catastrophe" which in some ways I think is a good description. The larger the bleed the more the senses and functions are knocked out A SAH is still relatively rare but it is a very disabling and dangerous type of stroke and we who are here to post are the 50% who survived but we always keep in our thoughts those like your mum who weren't as lucky. i have no recollection of my sah event when it happened to be honest and it was a while before I knew I was in hospital. I suspect your mum had a very big bleed whilst sleeping and just never woke up. and knew no pain. I hope that helps.
  2. Sah 7 months post op

    Hi, I am going to echo loudly what SM suggests. I know your partner will be scared and the last thing he would want is to go backwards and trust me I know LPs are horrid as anything but please get him to go and get checked and scanned. Any hospital when you present with that history will scan him, if he had to have LP prior to reduce the build up of fluid then it can happen again. If he is sleepy and it it like a shutting down of senses he needs to be seen. I had to have a shunt placed 5 months after my SAH so please whilst I'm not suggesting this would be the same scenario for your partner ignoring a pressure build up is unwise.
  3. Hi Margaret, I'm further on than you but I have not been able to regain doing any high impact exercise. Now I do have a shunt as well so I know I am prone to dizziness and don't have the balance I did but I struggle with anything that really raises my blood pressure too much it seems so I have adjusted how I exercise and now do lots of walking instead. I agree a health check is important, if symptoms are new or changing then don't ignore them. I have been feeling more fatigued recently and it would have been easy to put it down to the brain injury but in fact I am low in vitamins and iron even despite eating healthily , that said my GP thinks my ability to absorb them may have been disrupted by the effects of the SAH and my hydrocephalus so I need to take supplements. The facts and stats tell us that half of people who have an SAH do not survive and of those that do over half will be left with lasting effects and 1:4 with disability. I think we talk all a lot on BTG about recovery which is brilliant but the bleed in the instant it happened does result in an injury across the surface of the brain "This is due to the damage caused to the brain by the initial bleeding and by the shortage of oxygen to the brain which follows it." Any surgery also cause an injury and effects. The effects you describe I think are very usual with brain injury but sometimes are masked at first by all the more physical recovery and healing that is going on. If you like once the big regains that are there to made have been acheived the effects of the injury that remain reveal themselves. Im not sure the grade of your bleed but the bigger the bleed the more significant some of these can be. Have you ever been referred to a neuro psychologist? I found that very helpful to understand my more lasting effects and how to adapt.
  4. Travel Insurance

    Louise I used Insure and Go this year and last for my trip, they were the only one that I found that gave me the cover for a semi reasonable price. I found a few others who said they could cover only to find that I would not be covered for any shunt related issues if they arose. I have used Staysure previously but they were very expensive last time and also terribly rude last time I quoted with them so I wouldn't recommend them now. I hope other people can recommend some others too. how exciting though. One thing to note is some place are more expensive insurance wise , I expect Super Mario may know the answer on that
  5. Hi, I was late to see this to share but the Brain and Spine Organisation are running another event this year for careers and survivors in London on 16th September 2017 on "life after SAH" May be useful ful for anyone who might be able to make it. I was treated at The National and credit a huge part of my recovery to date to the support and access to care they have given me ever since and their staff are supporting this initiative, https://www.eventbrite.co.uk/e/life-after-sah-a-half-day-workshop-for-patients-and-carers-tickets-35930683642?aff=erelexpmlt is the link for the event to register of know more.
  6. 3 weeks post SAH

    Hey linda I'm glad you went and got checked out, I think many of us have been back in the hospital when something feels out of kilter and I can honestly tell you that the medical teams are happy to assist and most do understand and would prefer to have you come in so don't feel you are wasting anyone's time. I was back in not long after my shunt surgery and like you stayed overnight for observation and the next morning said to the registrar on call that I was sorry I wasted his time, his reply to me ; "You survived an event that many sadly do not and it has changed you and you are just beginning To learn about this, don't worry that you are wasting our time, your pain, your reactions are real and we will help you each and every time you need us." He was a good doctor. But the odd sounds, the feelings are so alien and unsettling, there's no other words for it and it is about beginning to recognise them , not let them run away with you and to see that maybe they are signs you need to rest or pause more. I prescribe more Sofa time with Jack xx
  7. Really hope you mum gets a rehab bed soon . Maybe see if you can chat to the matron if they have one and have a check in on mum's care and set expectations. If your worried then you could always involve the patient liaison but often a chat and conversation is the best starting point. Tell her her btg is rooting for her
  8. Mary, nice to see you back on BTG. You are so right though, I think about it now as my traffic lights , that's how a friend who also happens to be a neurologist explained it to me She said my sequencing of lights that I had spent my life being able to predict had changed and I needed to pay attention to learning my signs, did I have a green light on my energy or pain and am ok to proceed or was it going amber and I should proceed with caution. Her advice was I probably shouldn't be tempted to 'jump an orange light' and never ever run a red. well I ran plenty of reds early in and I can't say that I don't sometimes push on past my orange now and then hit a red fast but like you I pay attention and make sure I am trying to read and listen and adapt to my signals and what my brain is telling me . But time is our friend in that isn't it? Mrs M an interesting fact is the brain itself apparently doesn't feel pain so it's the nerve endings in the surrounding tissue that creates it or tensions we carry in muscles etc. So as Win (Also sometimes known as Mrs O) will say try , 'lose the stress' and I always add try to be be kind and patient with yourself as you heal
  9. Newbie -Linda

    Linda Hopefully the greetings you have received from fellow survivors will make you feel less alone. The immediate time after a SAh I think is full of anxiety and of course what is in charge of the anxiety and thoughts ? our slightly hurt and damaged brains , and so the chemicals all get off whack and every sensation feels heightened but each day you will see improvements. The best thing to learn as early as you can is to put pauses in your day. Think of it like punctuation in a great story, it makes it far more enjoyable. Before sah we probably all had tendency to get up and then stay up at full throttle until we rested again but now you need to create a new pace and pattern that will help heal your brain. So no one is saying don't garden if your physically able but take more breaks, drink and notice when you're weary and stop, don't push through. If you walk the dog ( who sounds super cute) , then come back afterwards and sit and rest together. If you do something even something a small simple as a phone call then rest again and just be still. Enjoy your grandson but again maybe notice that you can't bring the same energy and attention for the moment, heal it now and invest in that and it will help , that's what I found. When the feelings of pain etc come , and they will, then if you can just watch and wait with them and try to focus on something else and slowly breathe. If things get worse then you know to do something but often you'll find it will subside and the pain will shift and change and with it you can let go the fear a little more each time. Like Kris I meditate and practice mindfulness and did before sah but it's not for everyone but find your peaceful thoughts and cling to those when you get worried. Take care and enjoy that Oz weather.
  10. Hi VG, well done on returning to work. In the coming few weeks just notice your 'red lights' and pay heed to them as the effect of being back will be slightly cumulative and so you may need to make more allowance intitially whilst you regain stamina in your world of work. Work for those of us who have been able to return in some capacity is purposeful and can assist recovery further but it shouldn't undermine your health either so continue to know yourself and educate those around you to understand a bit more, you don't need sympathy you need their empathy and that requires understanding of what has happened and why you need that support. You will find the right balance. good luck.
  11. PJ. At the start there was so much I couldn't do beyond even the physical limits,. I couldn't be in a crowded room and by crowd read more than five people. Car journeys reduced me to tears of pain as did trains , I couldn't read a book or watch tV , loud noise wired me so much, but I was determine, read stubborn, that I would would find and explore new ways to get back to some things and figure out what I could enjoy. As time passed that's what I've done, explored and found my new ways of being and many are not as before, and some I have consigned to my rubbish bin of having tried it and it's not worth the brain drain ( big crowd events, fast trains, drinking to name just three ) It is a hard but normal reaction I think to listen to that ego to want to be all you were before but like any moment in history that is gone , we have to make peace with that and At the same time realise that the internal commentator we all have is probably the origin for Some of the greatest pressure and expectations in recovery . . We are born into a world that typically measures success by what you do, how well you do it, often how fast or competent you are at a task and then throw into that mix the noise, pace and landscape of chaos you are often trying to juggle doing it. Then put brain injury into that mix. It's a big ouch of running into a brick wall to be honest and pushing through often has harsh brain drain feelings and impacts which we all know are truly awful. But what do can we do? Sami S advice of not too much too fast Is best heeded. None of us advocate doing nothing at all or stopping putting yourself out there but you have to find a new rythmn and pace that works for you , tailored to your limits, you effects and that will probably keep changing for a while yet much like the rythmn of life. I went back to work after almost 16 months against advice because I wanted to know what I could do and explore that as far as I could take it and yes it is hard saying to people you need to step out of a situation , or you can't do something but you have to measure any progress from a post bleed setting and see how far you have come and still are travelling. Yes I might want to do something NOW but it doesn't mean I can or even that I should, I have to find the way to do it if it's the right thing to do ...I tell my kids that all the time.! Also then again most people I find are extraordinarily nice and kind about my story and When i tell them what's happened they don't expect me to just do things the same way and in fact are often surprised at how 'normal' i may appear. So Pj, Pat and all others struggling with that force of ego, do keep asking yourself what is right for you in any given moment , right now is what matters and you are the judge of it and no one is going to pin a medal on you for doing more than is possible brain and energy wise because you will pay the toll, no one else. So be kind and considerate to self in doing what is truly ok by you .In the long run your brain will thank you for and I think it allows a gentler way to build your resilience and learn the new you. evolution the SAH way!
  12. Questions

    Hey Kris, I agree with Macca and Mario. It's important to stay hydrated and feed your brain well. i think of it like this. Our brains run everything and need fuel to be able to do that, as we damaged them we are not as efficient with that fuel usage as lots is also going unseen into the process and energy of healing. So lots of small regular meals is a good plan. I keep snacks ( healthy) in my handbag and my car and I also find that if I am not eating well my fatigue and headache notch up even now. if you have things that you know don't aggravate your other allergies and contain energy then maybe make sure you have snack options of them on hand throughout the day especially if you have other commitments to deal with
  13. Kay - new member

    Kay it's hard to comtemplate having to have another procedure but there are others on here, myself included who have had to go on to have further interventions ( mine was for shunt placement but others have had further coiling or clipping ) and it sounds like they are doing some good investigation so they can work out the best solution for you long term talk to your team at queens, if you aren't sure about anything get them to draw basic diagrams. Like you I quite like looking at the amazing 3D images bit sometimes simple is best and easier, also my hubby gets excited when he sees those and starts asking lots of tangent questions so Now I take MIL to my check ups who is much more focussed and takes notes so we don't forget what gets said. ? Its a shock to realise that perhaps what you hoped was fully 'fixed' needs some further maintenance but trust that for them that caretaking of your anneurism is what they excel at. Ask lots of questions and keep coming here if you need some support with the thought of what's next. Take care.
  14. Hi Kay, do you mean that the aneurism is at the dissection point where three vessels or arteries combine? my aneurism was at the point of two main arteries and so whilst they coiled it successfully they couldn't fully fill it with coils as they wouldn't want to block either important artery and there was talk that if the small neck they have left changes then they would put a stent in to hold the coiling in place but I have regular scans and so far so good there has been no changes since, I make sure I keep my blood pressure maintained and am on medication for that but that's the only thing I do. I suspect they are concerned about 'occluding' these arteries and at the time clipping was the right and best option but the best answers will definately be found with your team to get reassurance on what treatment is best should you be more and get them to draw some diagrams of what the options of clipping, stunting and coiling are. I really dont know anything about clipping I'm afraid. Good luck. Daff
  15. Hi Pat, its a funny thing to be a few years further down down from our bleeds as in the early years it was the struggle of overcoming pain, limits and barriers that took our focus. As we gradually knocked down some of those barriers or rebuilt paths we then find ourselves a little lost. The world as we used to navigate is different place to use now, the things we did effortlessly drain our battery packs fast or worse we know our enjoyment of them is less as this brain just doesn't process it all as fast or as well. I talk about about trade offs now. If I am going to do something that I know will use a lot of energy I try to reduce down my activity a little before and plan to do the same after, even then I can still end up in a darkened room but I think it's worth it, those busy times are important. When i go to the pub it's hard. I am still quite noise sensitive and dealing with Background noise as well as following conversation means I have to take regular ' loo breaks' or step outside and there are some Places just won' t go to anymore as they are too echoey. I scan places now, 'where's the speakers' ' is there a quiet spot' and I am happy to ask for a quieter table or put in my ear plugs if needed. I plug in lots of buffers between things, I don't race from one thing to the next but pause and take moments as and when I need them and I make no apology for that. I still get surprised by what effects me and if I am honest I still battle with my ego of what I think I should be able to do five plus years on using what I used to do as a comparison. My ego still gets me into pickles which means I end up using way to much energy way to fast. So when I don't listen to that and instead approach everything with a bit more consideration and self kindness then things are better. But singing does work wonders ?