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Daffodil

Super Moderators
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Daffodil last won the day on March 1

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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

2,178 profile views
  1. Sallios, make sure you keep you water intake up, that will Help a bit and I did find gentle heat, like a hot water bottle, placed in small of back , helped a little with discomfort but it’s a horrid effect. Well done on the walking , that will definately be helping you physically and mentally but equally it has the effect of moving the system which in turn creates the irritation...be worth it in the long run, but take it steady, pace yourself and rest whenever you need.
  2. Sarah, like you I have a ‘neck’ on my annie as they can’t fill entirely with coils as it at the dissecting point of two arteries and another. My annual checks , scans typically say ‘no significant change’ . I suppose that would be my question, has the change been that significant that you now need surgery I And guess the only way to get answer is to get that angiogram over and done with ...(plenty of time to get the bikini area sorted at least 😂) sending you good vibes, I think you’ll know what’s right but you must trust new chap and if you don’t ask then ask for referral to someone else maybe for second opinion.
  3. Hi Charming, oh I recall that snazzy hair cut and look. Thankyou for sharing your story. Well done on how far you have come. I was 39 when I had mine in 2012 , like you had an EVD , lost days, couldn’t walkor read but was determined to ‘carry on’ as I had before doing things ‘my way’ but my brain let me know things had changed significantly and over time I have made plenty of adjustments to life as I previously knew it. Looking back i can see that adrenaline of surviving kicked in and masked how I was really feeling, I pushed way too hard, way too soon but I wanted to claim back all the independence I had taken from me so suddenly and traumatically. Please be considerate of your event, your bleed. It did happen and equally you also had surgery for a drain so there’s will be scarring, damage and effects at the site of the bleed itself. This is not my wishing to scare you but just to say to slow it down and enjoy the moment of now. Place regular breaks after anything that requires cognitive effort, eat well and remember that whilst invisible to you you did break a piece of your brain. Can you run on a recently broken leg? Yes if young and otherwise healthy but you’d be ill advised to do it without care and consideration of that injury. Our brains require the same consideration. It will thank you for it in the long term. Take care, I wish you continued healing.
  4. Support, advocacy , care and love are crucial parts of healing and adjusting post a brain event as significant as a SAH. It sounds like you are surrounded by all this and so continue to embrace this and ask for help when you need it and give yourself the time you need to continue to improve and build stamina. i hope your mum and husband are both doing well .
  5. Hi Jo Ann, glad you find Help in the site, there is comfort in knowing you are not alone and also reassuring that some of the odder feelings and effects that a healing brain can give are not cause for alarm. Its good you keep an eye on your headaches, maybe just rate it each day on waking and then try if you can not to place a focus on it during the day. If it’s starts getting worse see that as your amber light warning and slow down what you are doing, reduce cognitive demand and stop for a bit. I carry a ‘head fog’ most days but now with the privilege of time I don’t really notice it and it’s rare now I need to take a paracetamol ( maybe similar strength to Tylenol? ) and it’s usually when the weather changes fast and the head fog really rolls in! Take care, go steady.
  6. Hi I wasn’t clipped, I was coiled but did have surgery for my Shunt and still get sudden pains around scar site still . i am just adding to this thread that I think you should ask to be referred to a neurologist who specialises in headaches...the reason for this advice is that since my SAH 7+ yrs ago I have had a number of instances of very sudden onset symptoms which have included blurred vision on one side, hearing loss on one side, and sudden head pain. Early on this meant often a trip to docs who sent me to A&E and then usual investigations( and yes I do mean LP’s as well] to rule out further bleeds or problem with my Shunt . Each time I knew I wasn’t having a bleed. Roll on to last year and I paid to see a private neurologist for an appointment , it cost me £100 but he was brilliant. He did neurological checks I have never had from my Neurosurgeon and as he explained it that ‘neurosurgeons fix inside the mass whilst his specialism try to figure out the lasting effects and the why for what a brain exhibits’ He diagnosed me as having instances of ocular migraines but that due to how my bleed damage is it now presented differently to a migraine or headache like I would have had prior to SAH. That made sense to me. When I get overloaded or over fatigued the symptoms of that effect can vary and make no sense and I have long come to think it’s just how the brain sends the signal on that day. He said when I get headaches now the messages are a bit jumbled so present in a different pathway, He recommended to my GP that they switch my low dose BP tablets to one that is known to also help with migraines. Win win, Best £100 I have ever spent.
  7. Some great advice already and I hope that one thing you can take to heart is you are not walking alone in this and it is ok to feel as you do as it was more than our brains that haemorrhaged , its effect is across our lives from the moment it happens. When I look back the first 12 months were all about, surviving , dealing with pain, reeling from one step forwards then back. Then the second 12 months were about taking stock of what was lost to me and with that a realisation that life had utterly changed and not just for me. Talking that through is key. I echo Louise that Headway are superb, were for me anyway as assigned me a case worked who helped me regain things I had lost confidence to even try. Go back to GP and demand they help you , advocate for what you need and if you feel you can’t can someone help put that are across. Speak to your treating hospital and ask what help they can give. There is support out but sadly you have to fight for it. Try to break things down smaller and set different standards of goals. You cannot roll back to where you where before your bleed happened but you can move from from now, in this moment and see what is possible for you today and start to celebrate that as much as you can. Write those things you achieve down at the end the end of the day, what has been good but also write down what made you sad, cross, and then let it all go for that day and start each day anew. One thing for sure is that life post SAH is never the same two days in a row. You are still you with a life to be lived I promise, but you are compromised in what your brain will allow you to do right now. If you are low energy then it is a sign your brain is requiring that energy and is healing massively. Respect and nourish that . Eat well, move as you are able and set yourself goals and rest whenever you need to without guilt and see that combination as your path to future continued healing, i wish you well. I am 7.5 yrs out. I know this version of me better now but early on, well let’s just say I did not like the upgrade much and was resentful of what I had lost. Today I celebrate each day, what I am able to do, I have regained much but move at my speed, my pace for this day and always stop to smell the roses. Go steady and be kind to yourself . Daff
  8. Hey Andrea, Hope the flight and the scan went well. I understand the missing mum bit as had my bi annual scan this year and first time for me without mum to check up on me, come along and just, well, just Be mum..but I could feel her strength with me when I was in the scanner if that makes sense, I had felt it before when at my worst and know you can always feel love that strong. Your lovely mum was no doubt watching over you. Four years is a big deal I think. Things shift a little, you have more knowledge of this version and how limits and changes are with you and things slow a little in terms of healing, but equally still lots of possibility and healing there to come. In the words of EC, ‘carry on, carry on’ Daff x
  9. Travel for this years holidays went well and again the lanyard use at Birmingham really helped me, they were so kind and helpful . That said the staff at Menorca and airline we flew with were brilliant so no queueing at all for me this time. Makes a real difference so my energy doesn’t get wasted dealing with that.
  10. Hi Yun, definately Try the salt water , it will Help I think, I did that like Win after my EVD and then later Shunt surgery, helped with the healing which took ages on the scalp. I also used to give myself (and still do) really gentle head massages with oils around the scar site...didn’t want anyone else to touch my head but happy to manage myself. I used an oil I like the smell of, rose oil, but a plain grape seed one will work just as well. You look like something off the muppets after you do it but to be honest I felt like I was like something off the muppets ( that newsreader eagle maybe? ) I was so out of sorts back then. roll on the years to now and I still have really tender points around my surgery scars and get get odd tingling but sensitivity is far less, oil treatment still what I go for if that happens. Daff
  11. Hi vmama, hubbys poor brain is reeling from two assaults, one is the bleed itself spilling blood where it had no place being so that’s aggravated all kinds of things and knocked circuits out and secondly the Hydrocephalus placed pressure on his brain which caused a different vice like effect. At the time he had he had Hydrocephalus his ventricles were blocked or compromised due to the blood from the bleed which meant they couldn’t absorb cerebral spinal fluid as they should, and as the ventricles are responsible for the accurate production, transport and removal of cerebrospinal fluid, which bathes the central nervous system you can see any disruption is then tricky and whilst life threatening in it’s own right also has long term implications. Typically a drain is placed after a bleed when Hydrocephalus also presents to assist the ventricles and remove the pressure build up and this unclogs the ventricles and then it is removed and ventricles recover function but it can take months, maybe longer for the blood to be absorbed. After an EVD the CSF level is really out of whack and also the ventricles are trying to adjust and keep up and maybe they are a bit slower than they used to be and that can give you high pressure feelings which causes headaches when lying flat, moving to fast or changing positions. That said if symptoms get worse you should always get checked out , things of note are if eyesight changes, or he feels suddenly nauseous , has increasing dizziness, these would all be reasons to go and be sure all is ok. Keep going with sleeping upright, tell him also don’t shift position fast from sitting to standing etc. Stop, pause between every movement. Walking is great but pace it, keep food and water levels up and no heavy lifting. It’s no secret on here that I ended up having to have a Shunt placed after my SAH some three months after I discharged. I spent nearly 7 week in hospital initially and had EVD for most of that but after coming home My high pressure symptoms returned and got worse and scans revealed that actually my ventricles has been too damaged and hadn’t recovered as they hoped. they had some function but not not enough. I am not sharing that experience to scare you , my case is pretty unusual but more to let you know to trust your gut as I did. I knew something wasn’t right and Hubby will know . If he feels like things start dulling down and balance starts diminishing then don’t delay, that was my red light, things which weren’t great started actually deteriorating, like my balance, I started falling , so if that happens please get checked over. If the pain is pretty constant and als,that’s predictable and has a routine then sadly that’s just pretty typical post sah effects. sending the good vibes
  12. Hi, I’d ask them to watch this video I shared , wish I’d found it early on . My daughters are bit younger than yours but I do think it’s normal for them to go through adjustment too, you are not the mum they once knew, th8ngs did change, equally you need to be kind to yourself and give yourself space to continue to heal cos have no doubt it goes on and on. Talking is key. Tell them how you feel, talk about what has changed, talk about what you wish could change and maybe plan some things together . They sound concerned for you to be honest so maybe all agree some ‘rules’ for everyone on how you engage. So a listening to each other’s concerns for instance...a big one in my house is not laughing when I make really forgetful errors no matter how funny they may be( well unless I am laughing too that is) , I find it hurtful . It takes time to find your new rhythm, things that make you smile as the old stuff doesn’t hit the spot in quite the same way. Invite them to join you as you explore what makes you laugh and smile. Be curious together.
  13. Yikes that sounds a tricky situation DH. In some situations there is some support available through Access to work scheme http://www.disabilityscot.org.uk/info-guides/access-to-work/a2w-what-help-is-available/ and if your consultant is able to state it will take time for this to work out I’m sure that SAH is a qualifying criteria , maybe look into this to see if they’ll cover transport costs.
  14. This is the lanyard. Just go to the assistance desk and ask them if they offer the scheme.
  15. Louise. Well done for sharing This! I found my experience using sunflower lanyard was amazing ; i and family were pulled out of queues for passport control and security checks so I didn’t have to stand in queues and it just generally helped, I will be wearing it this July when I head off through Birmingham again. Great to see Scheme use spreading , Interestingly I shared with a friend whose brother in Australia had a bleed and they contacted Sydney and think they have also started or triallled doing a similar scheme...would be good to know if similar exists in other countries and if it doesn’t why not get in touch and ask them to do it!!! Let us know here..Help spread our wings a little x
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