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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