head injury and professionals


11 Replies

  • What diagnosis do you think you should have? You have a brain injury and added to that a hypoxic brain injury.

    You may have to see your consultants and ask them to show you the scans of your brain and explain what any injuries mean to your day to day living.

    This is what I did, I had encephalitis, the swelling caused lesions In my brain, the position of which cause the symptoms I suffer from, plus sight problems because the swelling damaged my optic nerves.

    I've been told that from now on we "have to manage my condition". There isn't a diagnosis for what I have other than brain damage, I don't have epilepsy luckily.

    Sorry I can't be of more help, sometimes they have no name for the problem xxxx Janet

  • I don't know? What are your guesses? Tell us more!

    I want what we all want/need: all my xrays, CTs and MRIs explained properly (instead of nonsense 'reports') and names for anything that's abnormal that might/does explain the PAIN I get in so many places, some really severe. IF anything in brain scans not normal I want NAMES, I know what I feel but easier to have a name to tell people sometimes. And I can't be the only one with throat damaged by breathing tube+, why is this (and risks) covered up and lied about generally?

    Yes, I know I must try to 'manage my condition' (YUK words!) better = prefer: I must learn to live better with how I am now/with my injuries BUT: others accepting them wold help instead of calling me a liar. And then I might be allowed to access services which others can easily but I'm not allowed. Hurts. Bad.

    People keep telling me I must 'accep[t' how I am now but nobody says that those who did it must accept they did it, are responsible. And nobody tells docs they must 'accept' I KNOW I'm injured and won't accept their silly lies as truth/fact.

    Given up trying, can't make them, they don't want to, apparently.

    No strategies left = I failed, not clever enough.


    Moved on, best I can...

    Need resolution. Big-time. But it's too late.

  • It's never too late. Kick up a fuss, write, beg, plead, bombard the specialists until they are forced to listen to your concerns. You really have to. Only those who make themselves heard get anything done, or are listened to.

    Good luck and keep trying


  • Hi there Jesse and welcome to the forum.

    I assume you mean that either one or both incidences of damage has not been medically acknowledged.Perhaps you could tell us a little more about the circumstances of the events and the symptoms you have as a result ? Angela x

  • hi angelite my head injury was acknowledged told I had a small bleed into brain then I hadn't told I only had problems because I made a claim at work but family told me I was short temperded and forgot things since c/a my son calls me rainman I forget things ,have ocd hate company ,have a strong sence of what right and have put myself in danger wont let grandkids play like kids,fatigued and yes no medical help with this they fixed the heart so they done there bit .x

  • Hi Jesse,

    Whilst it's good news that your heart is fixed there is clearly a need for help for what sounds like a Hypoxic brain injury. There are others on here with similar issues so you are not alone.Have you contacted the Headway Helpline yet ?

    Their number is : 0808 800 2244

    Or you can email them at : helpline@headway.org.uk

    Please let us know how you get on. x

  • Hi Jesse,

    I have to agree with the other replies on this thread. Be persistent and pester. Phone your consultants secretary, daily if you don't get the response you want, they soon get fed up with putting you off and get the consult to deal with the issue. If you don't currently have a neurologist then pester your GP for a referral.

    If it's the effect on function caused by the BI that you're looking for then ask for a referral to a neuropsychology assesment. Not only will they measure what problems are being caused (usually being ably to tell from the assesment which areas of the brain are worst affected by the damage) they can also give you coping strategies to help with them.

    Hope this is of some help.

    Kindest regards


  • hi, have you had all the tests? ct mri etc...

    i had a cardciac arrest lasting 35 mins, they ran a few words tests and a CT and said, ' yes, hes ok, we cant explain the memory loss, maybe hes putting it'...

    Then i go to a specialist at my own expense and hes get an mri done, and bingo...brain damage is confirmed....

    if i were you i would insist on getting the best help possible and not be put off ...

  • hi this jesse wife thankyou for your reply we feel like we getting nowhere they fixed the heart so they have done there bit I would pay to see a specialist if I could get jesse to docs but at the moment he wont go just think we both tired of it but iwill keep trying

  • Get a SPECT scan. Look up Amenclinic.com

  • When overtired/done too much my body makes more wee, not needing to wee more but massive amounts of very dilute wee, I know this. I can't be the only one, anyone else have this?

    Is it something to do with fluid balance control going haywire? Hormone (?) which regulates urine output/fluid balance? All very complicated I think but PLEASE: there must be doctors out there (ABI knowledge or not) who KNOW this, please SHARE your knowledge! Thanks.

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