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Daffodil

Super Moderators
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Daffodil last won the day on June 25 2016

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About Daffodil

  • Rank
    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

1,641 profile views
  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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
  6. 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.
  7. 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.
  8. Firstly I think you should push to go back and be seen as the arms aching etc needs to be investigated and you seem to have a few worsening symptoms. Blood pressure tablets and swings in pressure can cause headaches but also just being back at work may have created a reaction for you. All the things you did before without thinking, the everyday processing of thoughts has been impaired by the bleed, you may be feeling well but your brain is having to work harder unseen to do the things you have always done. That takes energy and effort and can manifest as a headache or other odd aches and pains. The brain itself doesn’t register pain but of course controls everything in your body. I had strange effects for years and even now can get ocular migraines from doing too much which is very scary to suddenly lose sight.... Maybe look at how you are managing your activity. Have you just jumped straight back in? If yes, try to slow it down a little, put pauses between tasks, drink more water and concentrate on one thing at a time. Try to block background noise when you are working on something. You need to give your brain space and proper time to heal. If you fell over and really sprained your ankle you would have swelling, a massive bruise and you wouldn’t for a moment think you could run. It would be tender. Now apply that logic to the injury you have had in your brain, you can’t see it but you have to be kind And gentle with yourself as you heal . It’s not even two months , you need to try to pace yourself I think and that should help. Best wishes and really hope those headaches improve
  9. Susanne, I am not sure where you are located but if you are in the Uk you should find the treating hospital should have neurological nursing team and I would get in touch with them for some advice. 8 weeks is an incredibly fast return to work by anyone’s standards and I wonder has your husband actually accepted the magnitude of what happened or has he tried to push on and pretend it’s all in the past. Thing is the reality is blood spilled over the surface of his brain and that has effect whether we like it or not. it is a a permanent injury but equally one that we can adapt to . However not making allowance for a change in stamina and capacity of our brain will result in incredible fatigue and it sounds a lot like what your husband is experiencing. About 15 months after mine I attended a support group at my treating hospital, it was the earliest I could manage this with travel and there was a chap there who had done as your husband did and basically tried to force back to normal and bless him he used to almost fall asleep in the room he was so cognitively exhausted. My suggestion is to sit sit down and try and talk about this, the current pattern is not sustainable or enjoyable for anyone least of all him so something needs to change. Every action we do is managed by the brain and that takes energy, so After you do something that takes concentration , then have a pause, small rest then go on. Eat well, drink plenty of fluids and don’t try to match what you did before. In time he may do but paring it all down and building it up slowly and pacing activity will be the only way he can start to understand the new limits. Its hard but I promosie if you talk and make allowances then things should improve.
  10. Daffodil

    Mary-Clare. My SAH story so far........

    A lovely post and very honest. I winced as I recalled that constipation from all the meds...good to hear the site is helping you , it certainly has helped me. The water and pacing and meditation will all be useful that’s for sure. you asked about nausea, mine continued for a good whilst after my bleed but I had some other complications that could have been the cause of that. Main thing if it’s increasing , or getting worse then speak to docs, don’t suffer in silence or ignore things. Look forward to hearing from you on the site.
  11. Pat, have a shunt as well and I found I had almost no sensation around it to the touch of the skin for a good while after it was placed. Once the initial scar healed it was totally numb but then as it started to regain some sensation in that area of my scalp I found it was tender and also had some vey strange sensations, like a creeping feeling sometimes and it also felt tight. That combined with being able to hear the mechanics of it , being barometrically sensitive and the tube sometimes aching means I don’t ever totally forget I have it ( I had mine placed 6 yrs ago) but equally I’m very grateful I have it. If you have pain, or sensations that are changes to previous or increasing for you and you are worried you should always get checked out. Any hospital will take it very seriously indeed as a shunt malfunction is not to be ignored but I’m sure this is not that. Main things is to educate yourself what a shunt malfunction would show up like; in extreme cases it is increasing dizziness, imbalance, eyesight deteriorating , vomiting. Other things to keep check of is make sure is no swelling around any of the pipe or shunt site and no redness or discolouration.
  12. Daffodil

    Infection

    Tara, there are lots of reasons that there can be pressure on the brain, one is if her ventricles were affected by the initial bleed then this can cause a fluid build up but sounds like they will Try and work out what is going on and find the right solution for her. I had to be readmitted after my SAH , I had coiling and also surgery to place a drain to relieve fluid pressure when I haD the bleed ( or complicated Hydrocephalus it is called I think) and was in for well over a month initially but then was readmitted 3 months after discharge when it was obvious pressure was building and eventually required a permanent solution for Hydrocephalus with a VP shunt . I can’t speak for having a craniotomy but later surgery sometimes is the only option with complications and if it’s helps mum then it’s for the best. take care, sending best wishes.
  13. Daffodil

    Flying post Sah

    Agree with super Mario. I flew a year after mine after feeling reassured when Super Mario shared her travel log on here and I have flown every year since. A friend of mine who is a pilot also said the longer hauls may actually be easier as they have better cabin pressure, oxygen flow. I have an exemption for the scanners due to the make of my VP shunt ( examptions can apply to that and some pace makers and other medical devices) but that would only apply in certain cases also I noticed when I returned from holiday last week that scanners are updating again so there was one I could go through anyway with no issue. Main thing is to rest before you fly, make the trip to airports as easy as possible, make allowance to rest when you get ther, the next day post travel can hit hard m drink plenty of water, take excellent noise reduction ear plugs and just try to sleep. I also wear sunglasses on the airport to take the edge off. go . Enjoy. But yes get good insurance,
  14. Hey Clare I think what everyone tiptoes around a little is the fact that whilst we survived a life threatening event it cannot have failed to have caused lasting damage. You cannot get a foreign object, in our case blood on the surface of the brain, and not have damage, equally the same can be said of surgery, it leaves scar tissue and that means we have to allow and consider that. I imagine that an injury to the brain is like any to any limb, it’s not as resilient and elastic afterwards in that specific action as it was previously And for us that manifests as brain fogs, dizziness, word loss, the list is long and as individual as a bleed but as in many cases we can look as we did before especially once months and years have passed then people don’t know and if you are anything like me your ego wants to say “ I’m fine, I can still do all of this” My answer was to educate people. Explained why i still need breaks, ( still do) get tired, feel over stimulated and guess I’m saying is don’t shy away from saying what you need to continue to heal which as weedra says is plenty of pauses and breaks in the day. The thing is that if you do this now it will pay you dividends in the long run as then you adapt to your new cognitive energy and capacity levels. Build it up slowly , like training for any sport , I know that has made a huge difference to me in terms of what I could do in first year compared to where I am now. It’s not as it was but nothing ever is but my dips are less and also less scary when they do come. If you have a stressful moment you have to over compensate in rest terms, for instance I have just had a family bereavement and so have had to drop back lots of my activity including coming on here to make allowance for the impact of the emotional hit on my damaged neurons, even so it takes a toll . My mantra as ever is be kind to your self. You’re here after an event that is often fatal so take the time to find what works to bring you balance now in this moment , it’s probably not what you asked of yourself previously . I wish you well.
  15. Daffodil

    Post sah

    Coral, i think you need to perhaps look at what you are asking of your brain and then think about what you can what you can do to give it time and space to heal. Try keeping a diary of what heightens your emotional response or shortens your fuses. Here’s the thing, our brain run everything we do and it uses huge amounts of energy to do it and it’s a pretty amazing complicated system of how it does it. All of us got blood mixed into a space which is a very delicately balanced system of minerals , chemicals and my personal theory is that everything gets completely out of whack when that happens and circuits don’t function as well. There’s is damage , different and unique to each of us but nonetheless it seems there and you need to understand what yours feels like to you so you can learn how to adapt gently. The physical regains and recovery in my experience came faster and quicker than the emotional and cognitive and dealing with sensory overload was a big deal. Too much noise, light, conversation, emotions threw me out completely, brought me to standstill almost . all my taken for granted cognitive capacity that I had previously was gone and I had to slowly build up my capacity for dealing with it and that meant dialling everything back and managing my load. I still have to today six plus years on Look up pacing, you may find it can help you.
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