Aneurysm is it a disability

Is having a coiled aneurysm a disability? i am coming into my 6th year of been coiled and still struggling in my day to day life. i suffer with depression stress aswel as other health probs...i am coming very close to losing my job as my performance is low..ive never has the opportunity to talk to anyone with brain injurys so for a long time have felt very alone. can anyone answer my question?

21 Replies

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  • Hi Joanne, I haven't suffered with an aneurysm so I can't answer that for you but I'm sure somebody will come along soon and share their story! I do think any trauma to the brain slows you down tho and it's difficult to be the exact same as before. It can be a lonely journey at times and yes it gets you down...I have a brain tumour and I'm struggling to keep up the same pace as before my op and radiotherapy! Best wishes to you. xx

  • Thank u for ur relpy...ive not had any support only told the op was a success and that was that..for the last six years its been like this not sure if im coming or going hopefully been on here will help. thank u for ur reply i really appreciate it

  • This is a lovely group of people, everybody is so helpful. There's a lady called Cat who will probably be able to answer your questions and help with any worries you have, along with many others of course! It seems to be quite common that we are operated on and then sent home with little or no info and once the excitement of surviving such an awful thing passes we realise we are left and feel quite different to what we used to. Lots describe it as getting used to the new you...whereas others looking on to us just see us as the same person! It's stressful and frustrating at times! It's like an invisible illness that can be seen by others as not real but to us sufferers it's all veryyyy real! Be kind to yourself Joanne and rest if you need to as lots of folk seem to still suffer fatigue years later! Please always feel you can ask and share whatever is bothering you on here....we all do, it's very open in here and no question is silly regardless if you think it may be! xx

  • Thank u for ur kind and caring words..i feel better already just knowing i am not alone. thank u

  • Glad to hear it. You're never alone here, always remember that! You will learn a lot too as everybody is so honest, it's a godsend! xx

  • Hello Joanne - sorry to hear of your difficulties. I think many of us are or have been where you are but with the right kind of support, you can get through. As far a whether or not your condition is a disability depends on whether or not it is chronic / long term (usually 12 months or more) and its effect upon your day to day life. The same can be said for your depression. As it is affecting your performance at work, you really should get some professional advice - if you are classed as being disabled, your employer have to adhere to a number of legal requirement under an act of Parliament called the Equalities Act. You may be able to get advice through the Headway helpline number - also, if you have home insurance, some policies include legal cover for employment matters. The most important thing to do though is to get support, advice and maybe some counselling - once you do this, things will start to look better.

  • Thank u for ur advice...i now have be put in contact with conect for health after seeing my GP. im really happy that i found this place tho for the first time i dont feel different everyone here has made me feel so welcome so thank u

  • it's almost has to be, it and other related is effected your work yes?

    I have had a very good recovery but even so I'm not what I was and work bless them do accommodate that.

  • Hi Joanne and welcome.

    I am so glad you found us at last.

    If you ring the Headway helpline tomorrow and talk to them I'm sure you will feel better just knowing that they and we understand.

    Looking forward to your company in the forum.

    Love n hugs

    Xoxo

  • Joanne, I'm sorry you're floundering, but maybe you've underestimated the effects of a brain injury until recently.

    It's always been a gripe of mine that after telling us we're lucky to have survived (mine was a brain haemorrhage 5 years ago) we're sent home with no real support, leaving us to work out for ourselves how to face the future.

    I think you should ask your GP for a referral to a neuropsychologist so that you can discuss the problems which result from any type of brain injury. For me it's short-term memory loss, headaches, mobility difficulties, poor balance and heightened emotions/anger issues.

    There's no way I could have managed daily employment, and though I've learned through trial & error how to manage my symptoms and respect my brain's need for regular respite, I've realised that my limitations are real and permanent.

    I'm not sure what your views are regarding mood stabilisers, but an antidepressant might be worth considering to cope with the process of sorting out your work-life balance and hopefully getting an up to date diagnosis of your post brain injury condition.

    See your GP m'dear and start the ball rolling toward a more manageable quality of life.

    Oh, and welcome to Headway ; it's good you've found us ! If you fancy speaking to the Headway helpline, the number is 0808 800 2244 (free call-office hours) where you can access friendly support & advice and printed leaflets.

    Best wishes, Cat x

  • If chronic fatigue is recognised as a disability (NICE guidelines) then I'm sure many other symptoms of a brain injury/aneurysm will likely be so to.

    Chronic fatigue is a common overwhelming symptom of my brain haem, as well as certain cognitive dysfunctions - memory and processing. The worse my fatigue gets, the worse my cognitive functions are. I have to strictly pace myself and not squander my energies each and every day. But I do work part-time which has been important for morale and reconnecting to the outside world. On days off I alternate rest with outdoor exercise - walking to help re-build stamina. I'm sure that the surrounding village folk look at me and think that I look totally fit and able, why am I not working full-time! Hidden disabilities are not understood unless you happen to have one. I was once advised by my gp to be self-employed and that way I can work around my issues. It's the best advice anybody has given me.

    I would either phone Headway or if you want more medical advice, to phone the Brain and Spinal Foundation and speak with any of the Neuro Nurses, who I've found extremely helpful and experienced in identifying and clarifying any issues.

    brainandspine.org.uk/contact

    Good Luck Jo, and please don't feel you should have to cope alone.

  • Sorry for not getting back to you all individually. .to be honest im am overwhelmed with the reply i got..thank u all for making me feel so welcome so big thanks to all for the first time i dont feel alone

  • Hi Joanne. I have a brain AVM which is similar to an aneurysm. I believe it has effects on me (ie fatigue, poor short-term memory etc and have therefore declared myself as disabled on the intranet where I work. The disability act wording is pretty vague. But seems to regard any long-term impairment as a disability. It shouldn't matter that your aneurysm has been coiled if you are still suffering. x

  • Grey areas about our grey matter, surely not?

    Welcome, Joannebirley74 none of 'us' on here will have all of the answers, but we tend to make a team effort, pooling knowledge.

    'Disability' is a difficult thing to quantify, and it depends very much on who you're communicating with, and in what context they view the brain injury. Others have already pointed out that the lack of cohesive after-care is shocking, and we sort of fumble our way through this 'altered' life, making the adaptations ourselves. My Union Rep states that my brain injuries, from the original ruptured aneurysm, and the later elective surgery to coil an unruptured one DO constitute a disability, but the government-disability-benefit system declared me functional.

    Your employers have a duty of care to make reasonable adjustments to ensure you're safe to do your job, but the lack of clear information out there about brain injuries means that often they don't 'see' us as disabled, because we come to work with our shoes on the right feet, and generally don't eat the post-it-notes.

    As others have said, contact Headway for advice specific to brain injury, they're the experts, and they're used to people contacting them after being discharged from hospital, however long ago, with a pat on the head, and "Well, at least you survived, now get on with it!"

    If things are becoming difficult at work, I'd suggest you approach your managers, and ask for a referral to Workplace Wellbeing/Occupational Health, that's NOT you trying to back-pedal your way out of disciplinary processes, it's you making sure your employers are ensuring that both you and they are acting in a safe and responsible manner. They have a duty of care to you, and shouldn't be making unreasonable demands, knowing that you've had a brain injury. To cover yourself, I'd also suggest approaching your GP, and asking to be referred to Neurology, to see what their assessment of you is. (STILL waiting for my referral, I suspect I'm in a similar position to you, and it's not very pleasant.)

  • Sorry for my late responce. i just wanna thank youfor your advice..i am in contact with connect for help so hopefully they can give me some support with it all

    Thank you and take care

  • Hi,

    Brief answer for now....I'm in India at mo.

    But speak with the local remploy people asap if I were you. Government agency who help disabled or recently disabled people stay or get into work.

    Invaluable source of info and support when I needed them

    Good luck

  • How do i contact them?. Dont really how to go about it all.

    Regards jo

  • Look on website ? Or ask local gp ? Or jobcentre ? Think I had recommendation through my endless discussion with benefits people or local community neuro rehab team. Headway may know ??

  • Thank you i will speak with my GP. all of u people on here are lovely

    Thanks

  • I'm like Swedish blue, I now work part time since my SAH and it's been important for my selfesteem to get back to something but even with pacing and regular rest I can get knocked off my feet fatigue wise just by unexpected emotional turmoil or activity or cognitive demand. I think our brains can't process the chemical changes as well post bleed, wish there was some research into that but my neuropsychologist testing showed I had significant executive dystfunction amongst other things post mine which means things take me longer, use up more energy and as a result fatigue remains my greatest lasting deficit ...if I ignore the Hydrocephalus but that's another story!

    Is it a disability? well it isn't considered a chronic condition but the lasting fatigue if confirmed could be considered as such but I think the best advice is just talk to you employers. Most good ones really to do want to make it work for everyone.

  • Thank you for your reply...it look as though i wont be going back to work for a while yet...ive been gettinig a lot of pain numbness and pins n needles in my hands for last few month..just seen specialist they said its carpol tunnel so need an op...dont really know what to think of that. work is a hard one as i am the only english speaking person my manager speaks a little but i dont feel they understand me at the best of times so for now ill just hand in my sick notes and hope for the best...to be honest i dont think ill be returning to work there as hotel housekeeping is really hard for me i have no energy and id only be kiding myself thinking i could stay and keep up to the time scales 20 mins to complete a room isnt long enough for me and alrady had 2 letters of concern over my time it takes....so maybe something else.

    Take care and thank you for your advice

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