Long Term Effects of TBI

[Maweesqweeral]

This is my first post, since joining a few days ago.

My husband sustained a TBI when he was 17, and had to have surgery to remove a blood clot (extradural hematoma) after a slow bleed to his brain was identified 3 days after the initial accident.

This was back in 1984 and at that time he spent a week recovering from surgery in hospital and was then sent home without any form of rehab or follow up. After a few weeks at home he was encouraged to sit his highers and then a month or two later to take up his place at University. Once his hair grew back he was recovered ‘back to normal’, right!! He could walk and talk so he was better or at least that’s what his family, friends and GP believed.

Needless to say after a few years, university was too much and he was kicked out. This was around the time we first met. I knew he’d had an accident, but knew nothing about brain injury at the time and I too thought he was ‘normal’ apart from a massive scar around his head. We where married in 1992, and in 1993 he had his first breakdown. He has struggled since with various difficulties which have always been diagnosed as one mental health problem or another but no-one ever linked them to the brain injury, no GPs, no Psychiatrists, no Psychologists, no CPNs, not even 4 psychiatrists from the priory hospital where he’s been an in patient five times (I have medical insurance through my work)

He suffers from fatigue, insomnia, communication difficulties (can’t follow more than one speaker in a conversation), emotional dysregulation, headaches, crippling overwhelm and anxiety, an inability to make decisions, sensory overload (with smells, and sometimes lights) depression and more. But what he’s been treated for is depression, anxiety and OCD (as he’s been trying to get things in an order so he can find them and function - but again that was not connected to his TBI)

Then 3yrs ago after an assessment for Autism by Professor Tommy McKay (a leader in this field) he was advised that while much of his behaviour was similar to someone with Autism, given the brain injury and no clear evidence of similar behaviour as a young child it was not possible to say he has autism and that his difficulties where far more likely to be related to his brain injury.

He then privately found a psychologist 2.5yrs ago who has experience with brain injury, but my husbands issues are now so complex that this is making little difference. He hasn’t worked in 20yrs and has almost completely withdrawn from family life. Spending hundreds of days in bed and not coming out of his room, (time alone is increasing each year). I don’t believe this can be resolved with one psychologist apt every two weeks. Before Covid, the NHS had assigned an occupational therapist, however as like so many others on this forum this resource has been redeployed to somewhere else and that small glimmer of hope has disappeared with it.

Over the last 20years my husband has tried to take his own life several times and can’t see the point of going on when there is no hope of ever finding the support he needs.

I would love to be able to access a Neuro Psychiatrist to get a full assessment from someone who will take the brain injury into account, however here in Scotland there are no Neuro Psychiatrist in private practice and the NHS is unwilling to support this since his brain injury was 36yrs ago.

If anyone can share any ideas or suggestions of where to go or how to access a Neuro Psychiatrist through either the NHS (in Scotland) or privately, please let me know. In addition if you have any other suggestions of where to go for support / treatment for the difficulties my husband has, please feel free to share your experience with me.

I have felt so utterly unable to help this wonderful man who’s life is slipping away before my eyes. I am hopeful since joining this forum that someone else may be able to share something from their experience that might help us.

Thank you

[sospan]

Hi,

That is quite a story and as you say quite a complex set of symptoms and history.

As you have probably noticed once some negative behaviours start they can degenerate and even become ingrained into someones personality.

I am assuming as well, he had the correct medication to moderate his mood and any pain relief.

I am surprised that the NHS won't engage because he has attempted to end his life previously. I guess, it is since he isn't in "danger" at the moment he isn't a priority.

To be honest, I doubt whether a Neuro Psychologist would help long term. Yes, they could give you both some comfort by linking your current situation to the injury but beyond that limited help.

May I suggest you contact MIND Scotland (or SAMH) whom may be able to offer some support or indication.

If he got on well with Occupational Therapy then the Mind team may be able to find some activities that he could do - especially outdoor that would help him. They may also be able to find some support for yourself as the Carers are just as vulnerable as the person they are looking after.

There are quite a few links on this page which you may already be familiar with

citizensadvice.org.uk/scotl...

Sorry couldn't be more help

[Maweesqweeral]

Thank you replying😊

However just to be clear it’s a Neuro Psychiatrist that I’d like him to be assessed by as he’s been prescribed meds over the years which we now know were potentially doing more harm than good with the TBI.

I would expect a neuro psychiatrist to be able to look at the various CT and MRI scans he’s had over the years and help make sense of what the scans indicate in relation to a Neuro Psych assessment and general formulation based on his unique circumstances.

Ultimately I want a treatment plan that works but since we are talking about the brain it feels like I am asking for open heart surgery in 1920.

[cat3]

I'm so sorry your husband has been without help for so long. How heartbreaking for you to have lived alongside him and his struggles for so long and what a challenge, virtually lifelong, it's been for him.

I wouldn't know where to start apart from Googling Scottish Neuropsychiatrists. I'm sure you have all relevant information but I've enclosed the link just in case of updates :-

google.com/url?sa=t&rct=j&q...

I want to wish you all the very best in finding help. Please phone the Headway helpline to see if they have any ideas ; the number is 0808 800 2244 - freephone / office hours.

Sincere best wishes for finding treatment soon for your man my dear.

Cat x

[Maweesqweeral]

Thank you Cat for your kind words, Elle x