Post concussion syndrome??

Hi all, I'm trying to gather some first hand experiences of post concussion syndrome as my rehab team seem to be at odds about my diagnosis - one minute I'm told frontal lobe damage, the next PCS and then frontal, temporal and occipital lobe damage. It's really confusing me and I don't really know where I stand. I was assaulted by a patient at work, sustaining a broken nose, eye socket and mandible as well as numerous soft tissue injuries, sent to A and E where they examined my bleeding scalp and sent me home without an x ray saying I was fit and well. Without knowing the extent of the damage I had a few days off and then returned to work where, unfortunately I was assaulted again 5 days later where the back of my head was pushed in to a brick pillar with around 40 stone of force, that's when the problems started. I quickly became totally disorientated, unable to make even simple decisions, not feeling connected with the world around me or even my body, my sleep pattern was disturbed...the list goes on but I'm sure you all know the sort of thing. I am now nearly a year post injury and in the last 7 months we've seen little in the way of progress and what we have seen is down to us managing my environment rather than me making huge strides forward. I had extreme difficulties accessing rehab services and now I'm there I don't really understand what is happening. I have had no formal testing, my neuropsychologist seems to think there's little she can offer, the OT seems to be the only one with a plan but her goals are very different to what we want to achieve. Nobody seems to have much of a plan. I'm told the first 6 months with them will be an assessment phase but nobody has done any assessing and my 6 month review is in 2 weeks. They sent me to a psychiatrist for an assessment for PTSD and even he said there's nothing wrong with this lady apart from a brain injury but you need to do formal testing. I just feel so lost and the world is confusing enough these days without my medical team appearing so vague. Should my executive functions be getting better by now? How can we help ourselves? I've tried timetables and alarms but I can't follow what I'm supposed to do. I have the attention span of a fly so even if I start to do something I never stick to it. I was a creative person but now that's all disappeared, my coordination is shot to pieces, I'm permanently tired (how do you survive on do little sleep??). I know one year is a short time in terms of rehab post TBI but we were told initially that this would all be over in a few weeks and I was literally told to "suck it up". It's all such a mess. I just don't know what to believe any more. I just want my husband to know if he's going to get his wife back at any point. My daughter says she misses her mum. It breaks my heart.

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  • What a horrid situation. Have you been refered to neuropsychologist yet? Maybe that would be the next best step forward. What job did you do that got you so badly injured, just so I steer well clear..

    There are tests that can be done to see about damage to different brain sections. Have you got difficulties with your sight?

    They do neuro ophthalmology too!

    Please don't get hung up on recovery time ticking away. Many of us will tell you we are still making improvements many years later, even if it is just the ability to stay awake longer!

    It is difficult as a mum and it's difficult as a child of a mum. My kids found it very hard. They are more used to my outbursts, early nights, mixed up language. They didn't get the old mum back but they got a different version that loves them just as much but is a lot more needy. I am needy in terms of help shopping and finding my car for me, keeping me on track with getting places on time or leaving places when they see me approaching my limits. They also got help from young carers.

    You know the two diagnosis are just the same in relation to how you are treated, you have a brain injury either way.

    It sounds like you are trying to put in place all the coping mechanisms that we use. It took me a long time to manage my timetables too. I still struggle with time now and it's 10 years since my dunt to the Heid, it does get easier with practice. Try having less on the timetable till you get used to it. Gradually build up your day.

    And hello and glad you found the site :)

  • I can only say it does get better in the long term

    Hang on in there

    Best wishes

  • Hi Combatwombat, i too was diagnosed with post concussion syndrome eight years ago.

    The medic's seem to use PCS when they they know there is something wrong, but can't give you a true diagnosis. There are so many tests it takes a long time to go through them all... i know how frustrating it can be. I have now been diagnosed with a diffused axonal brain injury, and am still waiting for the injuries to my spine to be explained to me. I have three children and and they all look after me now. It is hard sometimes but i am still here and count myself one of the lucky ones. Take each day as it comes, enjoy the little things.

    My O.T. is more like a friend now as we see each other quiet often, can you tell your O.T. what goals you want to aim for, instead of the goals she has planned for you?

    Good Luck, and Best Wishes

  • Hi there,

    i too have been diagnosed with post concussion syndrome and post traumatic migraine following a head injury 15 mths ago now.my symptoms have shown little if any improvement so i can sympathise with you.its hard work each day, tiring,re arranging your way of life to suit how you have changed.i find my thinking,memory ,language skills the hardest to cope with especially when im more tired or have pushed myself too much.im waiting to see a neuropsychologist at the moment.we just have to try and stay positive i guess!!

  • Hi. I'm two and a half years on and they've gone from stroke, to PTSD, to TBI and currently quoting post concussive syndrome at me. Spent endless hours researching and the truth is they haven't really got much that can help with any of them! Would recommend plan at least double time for everything and half the amount of tasks in a day. Do anything you can to avoid brain and/or body fatigue as it can trigger all sorts of neurological symptoms. And the part I struggle most with... accept and let go of the old you. Hope this helps. Good luck. Ax

  • Hi Combatwombat,

    What an awful situation to be at the arms of another and its totally not your doing. May I suggest you right a full diary of what whats been happening to you from the date of the first assault including the second assault detailing how you have felt and what you have been doing or not doing in every day life and how its effecting you. Take this information to your GP and explain that this is not living and you need some help and a diagnosis of what is happening to you.

    My heart goes out to you and its fantastic you have found this forum so come back and let us know how you get on. XX N

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