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Daffodil

Super Moderators
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Daffodil last won the day on June 25 2016

Daffodil had the most liked content!

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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

1,537 profile views
  1. 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.
  2. 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.
  3. 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,
  4. 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.
  5. 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.
  6. Lovely words and advice from Valene. My best advice to you when you have that negative voice or feeling is to stop and imagine what would you say if it was a beloved friend or relative stood in front of you saying those same things about themselves for a task done differently or a small mistake. You would no doubt reassure them, encourage them that their intentions were good, their efforts amazing and to remember how far they have come. Now extend that very same courtesy to yourself. Please practise being kind to yourself. Cut yourself some slack. Yes aim high, have curiosity about what’s possible and push limits but when the voice comes which is usually ego and self doubt then Just silence it by being kind about your efforts and intention and focus and practice that.
  7. Daffodil

    Confusion?

    The symptoms you describe are some of my classic ‘early warning’ signs That I need to slow things up, pace myself more and rest up. I push through at my own cost and rarely would I ignore them now but I know I did often early on and still do on occasion, No one can tell you what’s right for you, you have to find your owns signs of what’s too taxing for the brain in it so healing right now but ask yourself honestly how you feel. Have you tried to pick up at the pace you were pre bleed? now ask yourself is that realistic and sustainable right now and if the answer is no then slow it all down and drop stuff. Sometimes just slowing it all down and practising the art of paying attention to any given moment, that task, that person can be the best gift you can give yourself when healing from a brain bleed. I did mindfulness pre bleed and have continued it since and it’s allowed me I think to get to acceptance of where I am and my limits but had also taught me that actually I do better when I just pay attention to one thing at a time. Regulars to the site know that I am a big fan of becoming excellent at uni tasking. Multi tasking is a misnomer and more research is showing its actually a less efficient way to get things done. Mindfulness helps do just that, it’s not about tuning out but tuning in to where you are, or how you feel or what’s around you and can help slow down the racing brain. So in summary how you feel is not unusual post a bleed be it aneurysmal or non aneurysmal based on probably 95% of the experiences shared here. The docs will say you are ‘fixed’ because you lived but your brain still has to heal from effects of having blood where it had no place to be. Think of sand getting in the engine....
  8. Daffodil

    Ups And downs

    Miss J. I get it I really do. I actually was signed off work for over a year post my bleed and ops but yes I wanted to get back to work, I enjoyed the purpose of it and was still curious about what was possible plus I felt I had something to still bring. Plus on top of that I was only 39 and had a mortgage to pay. i know you are coming from a slightly different place but you have to realise that for now at least you have a new level of limits and I think maybe you pushed too hard too soon, that said if you work in sport then that’s not surprising as it’s the factor that works to make athletes successful but here’s the thing, with a brain injury you have to give it space to heal. It’s exercising away constantly, working unseen, it’s running the entire body shop using energy but it also needs to heal from the blood assault it has had. That means time to shut down, pauses between doing things. I guess what i wanted to share is that 6 years on I still have curiously , drive and ambition but know that I have different limits and capacity to what I did pre bleed. I personally found I just can’t work at the same rate or frequency I did back then, ( and probably never will) my brain just doesnt allow it. The thing that I know helped me is I built things back up slow and got to where I am now and honestly can tell you I am just as capable if not more than before BUT I don’t have the same motor capacity nor ask as much of myself. I note my traffic lights and if it’s red I stop...most of the time. Rest is part of my landscape and I enjoy the view more for those pauses that I build in. So I think what everyone who replied is saying is ‘slow it down’ . Your survived something potentially life changing, life ending and it will serve you well to invest in a change of pace for now and who knows you might enjoy what that brings. I wish you well.
  9. Daffodil

    Kay - new member

    Kay, lovely lovely news. Go steady now, eat well and enjoy the pregnancy experience. Congratulations to you both and yes those scans can take a back seat to this news ! X
  10. Daffodil

    Strange Turns

    Charile, I still contact my nurse specialist on occasion.if I have a question re my shunt or other so it’s fine and they are happy to help if it means you can move forward. Periods can cause some extra hormonal unbalance and in turn the disruption post bleed mans we get strange effects and maybe don’t cope so well. Try and Look at your diet in the run up to your period, maybe consider taking some extra vitamins supplements for women , b etc and also including things like bananas etc 5hat have magnesium etc in it but take advice and maybe ask your nurse if they advise anything, yes main thing is If things get worse then get checked.
  11. Finollie, welcome and really glad the shared experience on driving is useful and is giving you hope. I personally would go back and see a neurologist and seek their opinion on this as think their view will be crucial in getting DVLA to consider any exceptional circumstances as they will seek advice of the neurological specialist. I am hoping Johnnie M or Hoofbeat read this question as they have been through the process and may offer some valuable suggestions. But keep the faith!
  12. Curt, it is scary to think about sneezing, blowing nose, going to loo even but each small milestone will pass and you can chalk off that particular worry, both of you, try going at everything more slowly, if it hurts to blow her nose for instance then try doing it slower, more gradually, that might sound a funny thing to say but you really can slow imost things down and it helps. Sneezing not so much that you just have to ride through. i guess what we are saying Is the worry is entirely normal, the first time she bangs her head ( and she will at some point) you’ll worry too, but with any worry just sit and wait a while, hold hands, listen to music and if there is nothing getting worse then you can let go the worry, there will be another along ( my husband still worries if I wince for any reason) but you will cope together. its really early so go steady and don’t try to go too fast.
  13. Daffodil

    Three Years!!! Still here!!

    Onwards Jan. I hope the coming year brings more positive change For you. X
  14. Hi Jeff I had a 4 also and had a cerebral angiogram before my coiling and then again to check 6 months post bleed. At the time (2012) I think that procedure was the absolute gold standard test for checking coiling but since then technology has moved on and It has not been deemed necessary in my experience for another angio since. I have MRIs for my annual and now bi-annual checks and my consultant is happy this provides enough visual evidence for their assessment. To my knowledge I have only once had an MRA and that was at my local hospital and not a neurological hospital and Involved them injecting dye as well. Ask your consultant what they advise? Each case for follow up is individual. So I think a MRA is about checking the blood vessels for clots and bulges whilst MRI shows more a complete view of all the tissues, full brain pathology and can give a 3d view so this would also show up ventricle size,( Thats Important for me as I have a shunt] but it would also pick up any changes in coiling since last scan. good luck and good to hear you are doing well
  15. Daffodil

    Jase - New member.

    Well done on the marathon, that’s an amazing feat and especially post SAH and I hope you enjoyed it. Do you talk to anyone about how you feel? It sounds like your partner is very supportive but sometimes when things change life as we knew it so suddenly and dramatically then it’s difficult to adjust without resentment and frustration and anger and at the same time you find yourself with a sense of grieve for the life you had. I do recommend getting some counselling, it helped me adjust to some of my life changes. Also try writing it down, that also helps you get some of the thoughts out. I know it probably feels like a lifetime but 18months is still early and there will Be changes and progress I hope for you as you continue to adapt and adjust but the feelings I thing are normal but don’t let them fester , get some support to work it through. And keep running!
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