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Daffodil

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Daffodil last won the day on June 25 2016

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About Daffodil

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    Super Moderator

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  • Website URL
    http://popgoestifty.blogspot.co.uk/

Profile Information

  • Gender
    Female
  • Location
    Bucks

Converted

  • 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
    8/3/2012

Recent Profile Visitors

1,738 profile views
  1. I just wanted to add that your question as to why is not unusual. I meant to say that also and it’s certainly ok to ask so not silly and no forgiveness needed. We have all questioned as to why but Try to also take comfort in your survival of such an event and just be gentle with yourself in these early days of healing
  2. I remember having conversation with my mum suggesting whether my aneurysm could have been due to falling out of a high slide when I was 4 ...we just will never know is the answer and I think unless you had a clear underlying condition known to raise the risk of sah then everything else is just coincidental personal history leading to that point when a weakness in a wall showed itself.
  3. Daffodil

    Fatigue in my legs

    Joe i take extra vitamins especially during winter to help me balance my energy but always do check in consultation with your doctor/ Neuro Team, but vitamin D is one of the key ones for me for sure. Also possibly look at what you are eating too, make sure plenty of oily fish , greens and nuts etc to help energy , oh and bananas are good too ... I suggest keeping a diary of what you do, eat and try to make sure you add little breaks after everything you do that requires cognitive energy..little pauses I call them Hope OT helps Daff
  4. Daffodil

    Shunts

    Here I am Win, better late than never eh? I experienced the effects of Hydrocephalus again after my bleed and whilst had a EVD when initially treated this was removed but later on like you I had to have a permanent Shunt placed when it was clear my ventricles wer too damaged to function properly but this was a few months out from my grade 4 bleed. Long post warning. Sorry. I now have an adjustable Shunt but in the weeks/ months after I had it placed I had terrible balance issues and sickness. This meant I had three adjustments to my setting until I found one I could function on. It wasn’t a switch though to make everything feel ok, it took at least a year from the last adjustment to get anywhere like feeling ok with it. That means sickness, dizziness, falls, oh and couldn’t drive for well over a year. You have to allow for the effects of the bleed primarily , the state of then placing and adjusting to having a shunt on top In my opinion adds exaggeration to many classic SAH effects. Living with a shunt is tricky ( check out Shine for more advice on that) but we have to remember we have also had a significant bleed which caused damage, surgery which caused damage , and effects of the pressure from Hydrocephalus when untreated, yep more damage, then living with Shunt creates an unnatural state for the brain too so it’s not an easy mix to adjust to. I best describe living with my Shunt as clunky . I have to be slower, more considered and measured in all I do and vigilant to changes. But I don’t hate it, it keeps me here. I can do so much again and if it’s clunky then that’s a price worth paying. Adjusting to a permanent condition is hard and and you need help to accept that to be honest. I’m mostly there nearly seven years out but it was an uneasy state early on and I resented having to have this kit in my head. I had to let go of my old self for the most and my ego of that to allow myself to explore what is possible now. And not all days are easy but there is enjoyment in most, apart from the rubbish head fog days in which case call me again the morning, Win, Super Mario, Louise were my Shunt gal warriors when I joined BTG, they let me know life goes on and Super Mario was flying all over the place and I thought ‘ I want to do that too’ My Advice. Take a look at what and how you do things, accept offers of help, speak to your team if things are intolerable and advocate for what you need to live with a Shunt . If you don’t feel things are right then keep chasing as none can know what is like for you, each person will have a different impact on them and reaction. If it’s feeling out of balance constantly and hurts to stand then my experience is get it checked for malfunctions. If it comes on when you move faster, get up for instance then it could be you need to slow or change how you do things. Even now I can never just leap to standing. If I do that I will fall. Teams who treat this are learning but the fact that they don’t know why or how the brain constantly create and absorb CSF and what affects means that any mechanism to assist or replace that function will never match our own previous ability to do it naturally and aligned to what our bodies needed. Thus my definition of clunky! Candidly there are times when I rush to the loo and know that my shunt has just ‘drained’. I can tell as I recognise the CSF smell. I have shared that with my Neuro Team and they expressed surprise and incredulity that there could be an effect like that but I know I am not alone in experience of that and that’s just one thing they don’t get, and there are many. But teams do want to listen, mine do anyway, I have the best Shunt nurse ever! Penny, have hope it will improve for you but don’t accept or be fobbed off. If you feel it’s not working for you then explore with your team what will. Don’t ignore any sign though which is sudden and could be Shunt related. Get yourself checked immediately without delay. Me? Well after all my early on adjustments I have a steady state for the most part. Few blips here and there which have required investigation and some extra MRI ( I still have annual checks) and last year I had some short term vision issues which we thought could be connected but are optical-migraines which my brain registers differently according to my neurologist. I keep alert for any sign of malfunction and other than that just try to live my adjusted best life. By by the way I was 39 when I had my Shunt placed Good luck
  5. Daffodil

    Did a stupid thing

    Yes I agree go get checked out if you feel things have deteriorated. It’s likely you are now anxious about it which of course makes things worse. Like Iola I tried to do many things too fast, too soon, invariably ending up flat on my bum, or lying in bed with fizzing sounds or dizziness having overdone it. I had to learn and you will as well that I had to approach things differently. Slower. Show myself more consideration and ask for Help to do tasks I used to take for granted. Try to notice your warning signs and if you feel well enough to change a bulb , great, but then do rest afterwards, sounds silly but you’ve just asked a lot of your brain; to climb, to focus, to balance , to coordinate, that’s a fast use of brain juice and you’ve got to build up slow and steady. i still find it hard to tip my head right back, it makes me dizzy fast but also I have a Shunt though so it doesnt Help that I hear the valves move when I do which i still find disconcerting 🙂 so I don’t change lightbulbs or do jobs that require me to tip head right back, I’ve just never got comfortable with it since
  6. Daffodil

    My wife 2 year scan

    Hi there. If your wife had coiling then It could be that they will keep check and monitor to see if your wife needs more put in as sometimes coils can compact . Other members have had this done. Not sure if she had clipping.... As of this year I will now have scans every two years but before that had them annually from post my bleed as I have a neck on my anneurism but because of where it’s located they can’t add any more coiling. I have another small one infundubelum I think it’s called which they monitor , oh and they keep an eye on my vp Shunt with annual checks for that. So far so good and heading for 7 years next March . I have come to find comfort in my monitoring , hope your wife does too in time. Also sharing i find it is worth keeping a small record card of my history in my handbag , doctors contacts, dates and treatments etc that way if I am travelling away from my treating Neuro hospital and needed to get checked out which I have done on occassion ( more for my Shunt) then it makes explaining lots easier, and gets you prompt attention when they read the history, they often go paler than me! Take care and try not to overthink it if you can. Easier said than done so probably worst advice ever....
  7. Hi Bev 6 months on and you want so much to hit fast forward and be able to resume life as you knew it but the effects of the bleed along with the meningitis means that your brain is still reeling from what is like an assault and some of the effects you describe are very familiar and I can still get some if not all of them if I over do things now over six years later. I couldn’t cope with any sensory load beyond gentle cognitive stimulation for the first year really. Conversations had to be one on one, if I went somewhere noisy I had to lie down after with everything reeling and the first time I went in a supermarket all the lights and pace , well i almost passed out. Didn’t go again for ages! It does get better but you have to give it time. Don’t stop trying and seeing what’s ok but rest after, that’s your mantra for now, do something, anything, then rest that brain. Earplugs, sunglasses are brilliant and again I still always have those with me. Drinking you should be aiming for a adults intake of water and make sure you don’t let yourself get hungry as the brain uses lots of energy as it heals. Tell your friends what’s hard for you, suggest doing something different, quiet walk , or ask them to book somewhere quiet and just join them for dessert or a starter, go for a cream tea somewhere off the beaten track . That’s what I did, I can now manage a meal sometimes but more than 5 people round the table and I start to lose attention and words but again it’s improving now still. My social life is very different, gentle probably best describes it but I’m still curious still pushing boundaries. I was 39 when I had my SAH.
  8. Daffodil

    Lorna

    Hi Lorna, Welcome. There are lots of good and historical threads to read on BTG that will hopefully let you know it does improve but it needs time, care and patience and also a willingness to change. After a bleed things won’t just bounce back into place and you can’t push through, you have to recognise the invisible but serious injury you have sustained and you need to pace things slower than you did and give your battered brain some time to recover. Everyone is unique in their bleed effects but you need to pay attention to when things are ‘too much” and then have a break and try to be gentle with cognitive demand and build it up slowly. There’s some good advice on back to work if you search that , the main thing is to not try to fit back in as you were, slow is you really friend for now. take care
  9. I think once I could get my brain to stay still for a bit post bleed I started to become more and more curious about what had happened to me and what life might now look like. When I got on line, (which was a fair few months afterwards) I scanned and read the statistics. About 40% of all people who have a ruptured brain aneurysm will die as a result 4 out of 7 people who recover from a ruptured brain aneurysm will have disabilities Brain aneurysms are most prevalent in people ages 35 – 60, but can occur in children as well Women, more than men, suffer from brain aneurysms at a ratio of 3:2 Ruptured brain aneurysms account for 3 – 5% of all new strokes (2012 Brain Aneurysm Foundation) The facts scared me. Too harsh, too disconnected to my experience so then I looked for stories from people who had been through this. I didn't find BTG and you lovely lot until much later after I had my shunt placed but I did read a book @Rebooting my brain' documenting personal experiences of SAH as part of my attempt to learn more about what happened to me and I took great comfort from this shared experience in them even if at the time it took a huge effort to read it and it was not always a comfortable read. So woke up this morning and I wondered if having a thread where we can share book recommendations might be useful to members so I am posting this as a starter of the three books I recommend.
  10. Daffodil

    What's a SAH? What is that to do with the lesson?

    Paul Welcome to the fold. Surviving our bleeds changes us forever and each of us have different impacts and legacy of our bleed as unique as our individual brains are but we all share that curiosity of possibilities in a life after bleed and I think that is a real key towards a more lasting acceptance of change having been forced upon us, None one of us can go back, rewind the clock so to speak but we can be kind to our brains as it adjust to its new working capacity and limits And in that find things we enjoy and can do and a pace that is good for us now, in this new state. I am six and half years out . Talking, curiosity and stubbornness are the three qualities I think are my greatest tools in my ‘rebuilding life’ kit as I explored what on Earth I can do now. Early on I couldn’t see much possibility of how I could ever regain doing much of what I had taken for granted but now with that time passed I can look back and see so much progress, so much achievement but also acceptance that I am and will always be different to whom I was then. And I’m cool with that. Go steady Paul. be kind to self.
  11. Daffodil

    One year anniversary after SAH

    Hi there, Its not uncommon , they will monitor the coiling and in some cases I think members have had extra coils placed where the coiling has impacted. I am not sure the thresholds to do this but they should be able to answer that for you. I have a neck on my aneurysm because of where it is situated between the dissection point of two arteries which means they can’t overfill it and also have another small one so I was scanned annually for the first four years and now am scanned every two years. ‘No significant change’ is my goal each time and I’m even used to the MRI sounds now. Still hate the head mask though. I have been told in my case they would have to stent if they felt further intervention was needed. Happy Anniversary, 1 year out is a good feeling.
  12. Dina The first months post SAH are pretty scary and worrying . Every ache and pain triggers a response and no matter how rational or logical a thought we give it we still worry it’s somehow connected. All I can share is what I have learnt in the time since then which for me is to sit with and watch. I practise mindfulness, which is the practice of paying attention. I did it before SAH and have continued since and it’s helped me. It allows me to concentrate on breathing when I am in pain but also to just pay attention to what’s happening . Is it changing? What does it feel like? Not to judge it or solve it but just to observe it. Then here is the thing, if something or one thing is really getting worse, say one symptom or pain and discomfort increasing then that’s something you shouldn’t ignore but if it is shifting and changing and you can shift your attention to just your breathing, noticing the pause and pace of this then often you can ride that crest and the stress you will be holding, the anxiety you are feeling will flow away. You aren’t alone. It’s ok to feel scared and it’s good to talk about that and you need to be kind and give yourself time to recover. The brain heals silently and invisibly but not without plenty or bumps in the road.
  13. Daffodil

    On this day in 2016 I had my stroke.

    Glad you are enjoying the journey Johnnie , your motoring passion will definately have helped many....shame about fuel costs right now though, I may have to consider Horse and cart at this rate
  14. Daffodil

    MRI

    I wanted to note that whilst Hydrocephalus is one potential side effect of a bleed it would be picked up on a MRI with changes in ventricle size. Hydrocephalus is incredibly serious though and as life threatening as a bleed so for the avoidance of doubt though NHS guidance and definition is : “Hydrocephalus is a build-up of fluid on the brain. The excess fluid puts pressure on the brain, which can damage it. If left untreated, hydrocephalus can be fatal.” People diagnosed with permanent hydrocephalus require a VP Shunt to be placed as their ventricles are not working properly and any changes have to be investigated in case of Shunt malfunction . Living with a shunt can bring dizziness and vertigo episodes as Delta, I and others can attest to but it is a thankfully rare complication. Some people can have temporary blockage of ventricles post their bleed due to amount of blood but an EXtra ventricular drain (EVD) is placed and often is enough to relieve symptoms and their ventricle drainage recovers and no Shunt is needed. Blood anywhere across the brain surface can have lasting effects ; vertigo, tinnitus, eyesight issues are all reported by members.
  15. Daffodil

    Ann - New Member

    Ann, I think that there is no rhyme or reason for our anneurism , I too was not considered high risk and was 39 when I had mine. Main thing is to build up slowly. If you do something then rest after. Make lists, use reminders and be kind and gentle with yourself as you heal. We are all lucky to be here and sharing our stories but it’s an adjustment as we realise our brain doesn’t quite react and do as it used to. Aim at steady, that’s the best goal I find and always take the time to get outside and just sit quietly and enjoy the day. re driving, in the U.K. you qualify for free buses if you surrender license due to medical reasons, is that the same in US I wonder? If not maybe there is a local community scheme to help with rides to the mall or similar? Your doctors should know.
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