My Daughter Brain TBI

Hello. I'm new here. On 04.10.16 my 18 y.o. daughter suffered from multiple scull fractures including face bones, serous Traumatic brain injury with 2 substantial bleedings, tear and swelling of the brain. She was in coma for nearly a week with bolt screwed to her head to relive and monitor pressure.. the outlook was very bleak but luckily she started to recover fast. She was transferred to rechabilutation centre and after 3 weeks there she was discharged home. That was 3 weeks ago. I was told that her rehabilitation will continue from home but I haven't heard from anybody. I am really worried as I think she may be missing out on chance to improve. I am trying to do extercuses and play games but I'm not professional. Is that normal situation to be left alone like that ? Where can I go to seek additional help ? I feel very anxious 😩 Thank you.

10 Replies

oldestnewest
  • Do ring the headway helpline,number at top of page,they often services in youre area who can help,sometimes they may charge a fee,the sercives not headway! good luck

  • I was in a coma in 1996 and as soon as I was able to walk and talk (both just about), I was discharged from hospital and sent home. Everyone thought 'oh she is fine now' as physically from the outside I looked 'normal'. My brain was damaged, frontal lobe and the last 20 years have been a struggle, although I have improved massively. Just be there as a loving and supportive family member and she will find her way in this world. Hopefully now there is more help available, I only know my story of receiving no help at all twenty years ago and having to find professionals ourselves (my mum did all the work- I was unable to). If she wants to talk to someone a psychotherapist is a good help. I was lucky to be recommended a good one.

  • Of course check the Headway services in your area as they will probably be able to help. They seem to provide a massively helpful service to people with head injury. I remember 20 years ago when things were not as advanced as now and I just found it too overwhelming so soon after the accident. In my case speaking one-to-one with someone different from my friends and family really helped and it was my first step towards independence as I was able to get a bus there alone after some months. My loss of independence was really frustrating I remember! This is just my story and everyone is different :)

  • You need to get her brain relearning things like balance and speech as soon as possible and not wait for the authorities to get their arse in gear as they take too long.

    Ive done it twice and I know what I'm talking about.

    Early intervention is the key

  • First off welcome,

    There are a lot of survivors (as we like to call ourselves) and carers on here. Many of us have gone through what you and your daughter have and are about to go through.

    Whilst not wanting to worry you, what you have gone through up to now is just the start. One thing that most of us have found is that the NHS fails to prepare both survivors and carers for the changes and difficulties that are to come. And there will be lots, some at first and then some you will find 6 months or more down the line.

    Leaving with hospital without a support plan is very common. This where the fight continues and your daughter and yourself will need to become your own "expert". The reason I say this is that knowledge of head injuries amongst health professional is patchy to say the least and sometime you will have to steer them to get what you and your daughter want.

    I would contact Headway as has been suggested, adult services in your local authority, local carers associations and the benefits agency.

    It would be too long to suggest in this reply all the things that may help and will be too much to take in at this very tense time.

    But please keep on popping in and ask as many questions as you want.

    Wishing you all the best.

  • First welcome

    As everyone else said please do contact headway as they will be able to help you.

    You and your daughter are in my prayers 24/7

    Laura

  • Hi Solveg

    Welcome to the community.

    You are not alone because my youngest son Zac aged 5 suffered a fractured skull, 2 separate bleeds on the brain 5 days apart and swelling of the brain after a freak accident at a swimming pool, where he slipped and hit his head first, nearly 4 months ago, will be in 2 days time and he is still in a coma on a children's ward. He spent a month in the ICU.

    My youngest brother Eric aged 32 suffered a fractured skull, a bleed on and inside the brain and swelling of the brain. He also suffered 2 fractures to his neck, higher and lower back, when he was knocked down with me 3 weeks and 3 days ago today. He is also still in a coma on a general ward, which he was moved to 3 days ago from the ICU.

    I would advise you to contact headway because they were very helpful regarding my current situation with my youngest son and brother and my head/TBI's.

    You and your daughter are in my thoughts and prayers always.

    Andy

  • I have to agree with the above! When I had my TBI I was in a coma for three days and discharged from hospital on day 10. Luckily my Mum had been a nurse but apart from a follow-up appointment that was it. That was in 1989 but apart from MRI scans to give them pictures of physical injury Neurology is still the poor relation in terms of medical specialisation! They simply do not know how the brain works and apart from monitoring pressure and spotting bleeds it is just wait and see...

    Recovery is a long process BUT the brain is amazing in what it can do and how it can compensate and it is wonderful to watch it doing its job. The main thing it needs is sleep so be prepared for this to be a major requirement. Also vitamins esp B and D but general good diet/supplementation. It is worth getting your GP to do a blood test as a baseline and say quarterly then biannually then annually for the first decade to spot any issues there.

    I am sure that others would agree that the major need will not be a Neurologist but psychological support for all those involved. Depression is usually a challenge so identifying it, using 'happy pills' effectively and getting training in techniques such as mindfulness are all helpful. (Sinking into the pit alone with no help is a vicious circle to be avoided!)

    Life changes drastically and sadly people tend to show their true colours when the going gets tough. But others are so kind and supportive and there is this 'community' of people who have been there and the blessed internet to enable contact...

  • Thank you very much for your responses and kind words. I feel lost and I know how important it is to as much as possible foe her recovery.

    I guess I'm more confused with it all as I have never came across anybody with TBI in my life. It's all new for me. I have read countless articles on the internet.

    I wasn't prepared for that sudden abandonment. Hospital that she was in first was absolutely amazing, doctors and nurses was doing great job and I will be forever grateful. Rehabilitation centre was a bit less attentive but still ok. Now it's just nothing. I will call helpline tomorrow. I will write a little bit more about my daughter later. Thank you all again. 💜💜💜💜

  • Good luck and all the best! Recovery is a struggle but every day gets easier. Even sometimes when it feels like it will never end, every day will be progression. Hospital staff are so good in hospital when they are needed at a crucial time and then you're alone with the recovery- at least the worst is over.

You may also like...