Post TBI Problems

[Ds30901]

Hello,

I had a severe head injury around 20 years ago when I was 5 years old. A depressed skull fracture where a piece of my skull pierced my brain. This led to a bleed on my brain which required surgery.

I was fine after about 6 months and growing up I’ve never had any major issues other than getting really painful headaches. I did okay at school. I’ve always thought of myself as quite intelligent and I’ve always had the ability to retain information (I was the person who did no revision and did well in exams).

However, over the past 4-5 years I’ve felt like my brain is no longer working properly.

- really severe anxiety and depression (which started around the age of 15 but has gotten worse over the last few years)

-I’ve started to have some serious cognitive problems that are getting worse and worse. I’m really forgetful so much so that I will walk into a room for something and not remember why. I struggle to make decisions and have problems starting a task or planning how to do something. If I have a number of things to do I get stressed and really struggle to plan how I’m going to do them. I struggle to concentrate and find myself doing something then deciding to do something else etc..

-I’ve started to have issues with balance and vision. I drop things a lot and find myself stumbling when walking. I’ve always been colourblind but lately I’ve been having blurred vision.

- Sleeping problems. This generally ranges from being unable to go to sleep, to going to sleep then waking up in the dead of night and being unable to go back to sleep. I always feel exhausted but I never feel like I want or need to sleep.

- I’ve also been experiencing a lot of pain. Particularly in my neck, lower back, my left shoulder and both of my legs. The worst of the pain is in my heels though. So much so that I’ve started to almost walk on my toes as putting my heels down on the ground can be incredibly uncomfortable. I also have a problem staying still. My legs constantly move/shake/jerk around. I also have a slight tremor in my left hand which I’ve never noticed until my partner pointed it out to me. My body is also generally very stiff (especially my legs).

I started piecing together the symptoms and thought that I had a lot of signs of MS/Parkinsons so I arranged to see My doctor who basically told me that it was very unlikely to be either of those things. I also mentioned my accident etc.. and I asked to be referred to a neurologist, he refused and He referred me to a musculoskeletal clinician who saw me and did some tests. During the tests she was very surprised that I hadn’t been referred to a neurologist as well because a lot of the tests she was doing pointed more to a problem with my brain rather than anything physical. She did also refer me for a full spinal MRI to rule out any issues there which I went for and there were no problems other than some moderate degeneration in my neck. My doctor has now referred me to a neurologist (was given an appointment for the start of February but it has been moved a month later which is incredibly frustrating). What can I expect from this appointment? My doctor told me that the medical records for my head injury were not on the system there because of how long ago it was and that they would be in their paper files. Should I request these to take with me?

I’m just here to see if anybody has any sort of advice or experience in seeing/having similar issues so long after a brain injury. I’ve been reading more into this aspect of things and all of the issues I’m getting line up with right front lobal brain damage which is where I hit my head. I’ve also read that people can suffer from these sorts of issues long term even after just bumping their head.

I apologise for the extraordinaryily long post. Any help would be very much appreciated.

[bexx87]

Hi, I have left front lobe damage when I was 13 (was put in a research study to see if my brain injury effected my puberty), around the 16.5 year mark I started going down hill, I have always had short tem memory issues, manage to go though college and now work fine, can drive, living independently ect I have always suffered depression and anxiety, Im on medication for anxiety, have been for serveral blood tests, hormone dept think its my injury and want me to be referred to neurology but my gp thinks its pregabalin but wants to check a different hormomone before approaching the neurology team to say if I take her off this medication what is the alternative, I get confused easily, I can only process small amouts of information (which is hard when you on the phone to a user which a complicated technical problem) my sleep pattern is all over the place (I suffered insomnia when I was 13) Im stressed more, frustrated more, so I know the feeling, at my 10 year review when I started working as a civil servant the research neurologist couldn't believe what my job was and my colleagues don't believe that my injury still effects me (I get "I still forget ect doesn't mean its your injury")

headway.org.uk/about-brain-...

Anyway welcome to the forum and nice to meet you

My mum has vascular dementia and my uncle has Parkinson

[steve55]

ds30901 because youre an adult now, the neurologist will prbably send you for an mri so he got something to look at, and hopefully a diagnosis at your next appointment.

good luck

[Hidden]

Hi Ds. I had a depressed skull fracture in parietal region(only moderate tho,no brain bleed-but no scans then,just x ray!)as a toddler nearly 46 yrs ago. And similar things with my memory(holding new info,distracted easily making concentration even worse. Stressed at too many things at same time which leads to me shouting,broken sleep for decades.

First of all get any paperwork u can as the NHS lose alot of things-particular if it will help u get a referral. I went to get an MRI privately,but gave up due to a consultant(also NHS) trying to tell me dents in head weren't in parietal region! Be persistent,they'll dumb down anything at GP stage to stop referrals(cost to NHS). If u get to see a Neurologist in these times is a miracle,find out what system holds records & ask for a summary care record. Hopefully nothing will be lost,good luck.