An Untreated Brain Injury

[Aries28]

Hi everyone,

I've come to this community as I'm not sure where to turn to for advice.

My brother had a serious road accident in 2003 when he was 17 years old (now he is 31). At the time, I was 15. He was concussed, and when he eventually did wake up he was delirious for a few days... things he said didn't make sense, he was hallucinating. He eventually stabalised and the hospital started to focus on his physical injuries once he did. Not much was said about him being concussed and the impact the accident had on his brain (he hit his head with force against the car windscreen) . I couldn't tell you what his official diagnosis was at the time when he was concussed, I remember he had a worryingly low score on the glasgow coma scale.

Since the accident, I have noticed my brother hasn't been quite the same. Thank god he is able to talk walk and lead a fairly normal life, underneath all of that however there is anxiety, depression, short term memory loss, mood swings, hyperactivity extreme lows, relationship problems, bad repetitive habits etc, not much self awareness, lack of concentration (finds it hard to watch tv or read anything). He hasn't progressed in life because of all of these reasons and is almost like his 17 year old self in a 31 year old body.

I need to help my brother and so I have researched TBI and got him booked in to a Neuro clinic, but I'm not sure what to expect. I don't know what to tell him with how we are going to improve things, because I feel like now we are battling with a whole heap of issues on top of a brain injury - because of the fact he hasn't been reading or taking in information, he lacks any general knowledge, common sense, and creates his own rules which become a danger to other people.

I requested my brothers medical records to see if there was anything that hadn't been followed up on with regards to a potential BI, but the NHS have let me know that my brothers records are missing from his accident, which is disheartening as I have no information to work with.

I don't know what my next steps are? Should I keep trying to get a hold of the records or focus on getting new brain scans? I wondered if there were any success stories for people who have long term undiagnosed brain injuries.. is it too late to improve?

I want my brother to lead a non-dependant life and be confident and free from depression etc and all of the things that hold him back.

At the same time, I am grateful my brother is still here. I often read the posts on this forum and many of them take me back to the days when we were waiting for my brother to wake up from his coma and I remember how that felt... so I am thankful with the progress he has made so far.

I'm thinking of everyone who has been affected by BI. I wish you all well and hope you are all making great progress

[Kirk5w7]

The thing is Aries there is no treatment for concussion, it is always a wait and see. The treatment i had for Encephalitis was antibiotics, anti virals and steroids but that was to try and help my body fight the infection.

Unfortunately the ensuing brain damage was untreatable, they could only aid me to learn to walk etc etc again.

His appointment with the neuro clinic will hopefully point out where the damage is and he may get support on how to overcome his problems but he will have to put in a lot of work to retrain his brain.

The younger you are the easier it is because of the brains plasticity but it is possible at any age providing there is determination to succeed.

I wish you well on this journey .

Janet x

[Aries28 in reply to Kirk5w7]

Thanks you so much for your reply. Hopefully the clinic appointment will help. I hope you are doing well x

[steve55]

aries your brother is showing all the signs of a tbi, hes probably noise intolerent too.

keep a dairy of your brothers behaviour and continue pushing for scans especially an mri.

i understand what youre going through because i have an abi.

have you contacted headway for advice?

[Aries28 in reply to steve55]

Thank you Steve, I really appreciate your response. I have spoken to Headway briefly, but I think I am best finding out what support my brother may be able to get from Headway as I think it might be great for him to meet others who have had a similar experience and have the same struggles. It must be Headway for more information I hope you are doing well x

[steve55 in reply to Aries28]

yes thankyou. i forgot to say, i go to a monthly headways group where there there are people like me whove had a bi, we have guest speakers with topics which vary from benefits to crafts. one i particularly enjoyed was meditation, because although im on meds for it my mood can change just like that, only when im out ( i have to say i only go out with my wife and shes continually looking for flash points ), but with meditation you can stop and do it anywhere, ive done it in a restaurant and at my brother in laws 50th, much to the amusement of his sisters and their husbands.

[keeley24]

Your brother does have signs of BI. Unfortunately as you are finding out there is a serious lack of support for people after BI. If you can contact a local BI group for support and to meet others in similar situation. In UK headway is the main/only well known one which would be worth a try tho I didn’t have much luck with them as I wanted more social interaction. If you are anywhere near hull in Yorkshire I can highly recommend the BI group I go to tho I’m not sure if they are taking new people on at min due to staff shortage.

[Aries28 in reply to keeley24]

Thank you Keely, I will give this a try - I live near Hull but my brother is in Newcastle. x

[keeley24]

Well they do offer help and support for relatives of people with BI tho I’m not sure in your case as your brother doesn’t live near you. If you would like to know the name of group for you to try let me know.