Medical update

So I had my usually fortnightly check in with my GP this week for more drugs and also had few questions ask him

1 my anger issues - I told him how awful id been at my parents fortnight ago and also that I smashed up the flat the week before that

I also had a massive go at a guy in Cornish pasty shop I went in with parents fortnight ago I'm ready to laugh about it now so I'll tell you it was all over him not having the Cornish pasty I wanted then not getting a free hot drink because the machine was broken I had serious case of potty mouth at the poor guy and my parents were mortified I chose an alternative and sat and are it and subsequent calm down and I went and apologised and explained that I have a brain injury.. I still hate saying that urgh

I mentioned that previous doc ask me if I wanted psychiatry referral and he was perplexed said that although my behaviour is not desirable there are reasons for it and that my psychologist will be able to teach me coping mechanism and breathing exercise yo do before it escalates but he was really great explained a lot of things that haven't been before he talks to me as a colleague because for those who don't know I do in fact have a medical background and hence quite a bit of knowledge which can either be terrifying or useful e.g I had CSF leak straight away but was too out of it to know or care but it slowed down but once discharged (the first time) I had violent sneezing fit and home and subsequently sprung a leak it was pouring out of my nose and making my lap soaked - I panicked

2 I mention that my old neuro consultant said that she would refer me to neuro opthalmology for my vision problems my new neuro doesn't give a bleep about anything that isn't directly to do with her even my spinal injury because my dislocation isn't currently pressing on my spinal chord she's not bothered what GP said upset me a little he said that neuro ophthalmologist can't do much because it's not my eyes it's my brain injury the visual processing component is almost exactly where my fracture is/was and the contrecoup injury is where my olfactory (smell:taste) is so he said I am to expect these problems for a certain duration but said no guarantee that they will ever return to 100% I know this but it's still hard to hear I guess I'm still stuck firmly in denial my

Visual problems are

-Blurred/double vision


- Long time adjusting between near and far sight eg reading and tv

- depth perception

- difficulty processing speed of something coming towards me eg person walking or car

- both eyes not working as team so for example I miss mug if pouribg kettle I also hit various other keys on keyboard than what I'm actually aiming for

This wasn't neant to be so long sorry


24 Replies

  • I'm so envious of you: I want a neurologist, psychologist and a GP, plus other expertise. Sick of trying to guess and doing DIY on myself. Still got broken (?) deformed foot (hurts lots), hurt it with ankle 2010 and got plaster for broken ankle but foot never examined properly, explained or treated. That after all the rest (icl. ABI/neck/damaged nerves, eyes etc.) in 2005, same hospital... I need my complete medical records/history and normal care, now, at last. This neglect is driving me mad. Wonder how they justify it to themselves?

  • Oh believe me I had my fair share of neglect I was a failed discharge 3 times because they didn't ensure adequate aftercare f

    irst discharge I had nothing NOTHING at all even though I had no less than 3 parts of my head injury which SHOULD have killed me on their own 1. The fracture was a basal one that just misses my brain stem and vertebral artery 2. Huge contrecoup injury to frontal abd both temporal lobes 3. A subdural abd subarachnoid haematoma (blood clot)

    Then they also completely missed a fracture-subluxation of my cervical spine until another hospital noticed 6 weeks after my accident

    I screamed and shouted to get the treatment I'm getting now and it should not be the way ...

  • That's real neglect & negligence, did they tell you it was all in your mind/imagined/mental health/psychiatric like me? Congrats on getting there in the end. But lots of us haven't got that stamina, are too injured and frightened to argue, over & over. Don't think famous people or queen would have to do that!

  • Hey muddled my neuro referred my to psychiatry whilst I was an impatient at a renowned neurological centre down South

    They saw me once and promptly discharged me from their dept they said i wouldn't gain anything from their services so they did me a favour :)

    Unfortunately since my brain injury I have ZERO filter on my thoughts what I am thinking comes out I even told my neuro to brush her hair and F off and come back tomorrow it's not something I'm proud of

    No I often wonder what the queens commode looks like


  • WOW, you made me laugh for first time in weeks - thanks! Me too, too often I say things but don't know where they come from, not aware til they come out of my mouth = scary. Not our fault but makes me (us?) worried sometimes in case we say something awful, lose confidence?

  • Awww I'm glad I made you laugh :) honestly some of the things I've said and done since my BI would have you doubled up

    Mind you I ghave always been the class clown :) I told another neuro that he needed to trim his eyebrows because they looked like spiders legs and I feel bad because he was a nice and knowledgable doc .. Ooops

  • You have go to contact headway - they'll be able t point U in the right direction cos that's outrageous - If you're using a landline the freephone number is 0808 800 2244 & if you've got inc. mins on your mobile it's 0208 640 8413. Give them a ring, I'm sure they'll be able to point U in the right direction so U don't have t put up with this alone !!!

  • Sorry muddled, looks like I replied t you on Emma's post (broken Doll below) - the contact numbers for headway are on that post - you have t get in touch. You don't have t go through this alone

  • Thanks StaceM8, did ring but no helpline can actually do anything, can't help me make docs acts as should - more's the pity. Praps with LOADS extra funding they could?

  • There must be someone that can help - have U been to the CAB ???

    Otherwise at least you've got us ;o)

  • Oh, done it again - looks like replyin to your comment appears below - ah well - take care & good luck

  • Haha how to confuse a brain Injured blonde ;)

  • I didn't mean to (or subconciously, did I ??? ;o)

    Now you're even more confused ;o)


  • lol oi

    Don't think I could be any more confuzzled


  • :-)

    I'll be thinking about that one all day!

  • The response to yours Emma is below these messages to Muddled ;o)

  • Wow U seem t be goin through a lot don't U ???

    Du know what, I was expectin to read your profile & read all about what had happened to you going by that post & nothing. I notice you're a regular to the site, well I'm Stace, nice t meet U - I had my head injury 20 years ago so have been through what the majority of U are going through now & can appreciate & sympathise completely. Totally different circumstance to a lot of you, yourself included but I feel I have experienced similar from what I've read.

    I've been using the site properly for the last few days, although was directed to the site about a month ago. After using the site properly, I soooo wish I had this support network whilst I was up in Leeds, cos I was pretty much on my own.

    Now I'm back down South near family & friends I'm currently in a happy place & am now happy t share my experience & the knowledge I now have.

    I think the one thing U have t do and this applies to everyone, is learn to accept what's happened to you. It's horrible & very unfortunate but the sooner U can accept that your life has changed, you're a different person to who U were or ever going t be, the sooner you'll be able t find that happy place, content with your life & just learn t love the person you are now. My new favourite expression - relax, chill, have a scone ;o)

    Don't put any pressure on yourself to be the person U were expecting or were expected t be, it's very unlikely but through my own experience, U can still achieve, just in a slightly different way t before.

    Anyway I'll stop wafflin, but any help & advice I can give, I'm here for you all Xxx

    & Emma what about a brief description of what's happened to you in your profile (although, like me , brief isn't something U do well eh ;o)

    Stace Xxx

  • Hiya stace

    I've already taken heed of your advice and written an essay (I think we gonna get along) in my profile its about time as I might as well just type it out the once


  • It sounds horrendous but at least you've found the site straight away so you'll have help & support from people who have had some first hand knowledge (well, kinda ;o)

    What I don't get though, why were you carted off kicking 'n screaming to the hospital & then kick off like you did ???

  • Yeah it was pretty horrendous but thankful I don't have much recollection of the event or events

    In my moments of conciousness which were quite lacking and I wasn't particularly lucid I was very resistant to the idea of going to the hospital .. Despite my medical knowledge (all warning signs there: continual vomiting.. Confusion.. Delirium.. Periods of unresponsiveness etc)

    Because my frontal lobe was damaged (contrecoup injury) .. This is where your personality and mood centre is.. Once in ED (A&E) I fear turned to panic .. With aggression added to the mix .. Not a pretty sight

    To be fair I heard them discussing me in the phone and it sounded pretty grave .. With mention of rescus/crash team ... Beds in HDU/ITU and because of my background I know exactly what all this meant and it scared me!

    I remember snippets like above


  • I totally understand your frustration, after suffering a TBI at 16, I've had a wide variety of symptoms, the external (facial disfigurement) bothered me most initially but now I've started to treat both.

    I had a rhinoplasty to correct my broken nose, I chose one of the best surgeons in the world in London and he not only corrected the deviated septum... he made my nose look better than it did pre-assault.

    With treatment and some luck, it is often possible to not only return to normal, but become better than we were were before the assault (reminding myself of this, keeps me going during my darkest days). Or TBI in your case, however it was caused (forgive me, as I'm new on here).

    One thing that's worked well for my eye problems (bilateral ptosis etc) is Naphcon A eye drops, they "lift" my eye lids and make my vision much clearer.

    I've recommended them to others who've had eye issues and they've been amazed at how effective they are. Worth checking out as they're available without a prescription.

    You can get them over the over the counter, I get them from Amazon.

    For my TBI and secondary ADHD, I get prescribed Adderall XR (imported from the USA), Vyvanse (Elvanase), and Xanax (also imported from the USA).

    Psychologists are useless for internal problems, and as my American psychiatrist correctly said "you've got motor issues, NOT moral issues".

    I find it's important to remind myself of this when beating myself up about things like procrastination, focus problems.

    It's worth trying medications in my opinion if your symptoms are persistent and resistant to other options, believe me I tried everything under the sun (non medication) and all didn't work and were useless to be blunt.

    I've come to terms with the fact that just like when a car engine has gone, a mechanic needs to step in and put more oil in, or make whatever changes need to be made. There is nothing wrong with US (the driver), if a car's engine is damaged it needs intervention.

    The engine with us would be our brains, of course.

    Once they're damaged enough, that's where the problem lies, there's nothing wrong with us... we already know how to drive.

    Hope I'm making some sense, good luck and keep persisting to get the treatments you deserve, often it feels like it's an impossible battle to win but what we do will affect future generations who'll suffer TBI's like us.

    Hopefully one day in the near future, mental health issues will taken as seriously as physical disabilities.

  • Hi laserbeam

    I was just scroll through my notifications and noticed my reply to you had vanished took me ages to type too :(

    Oh well.. You made total sense with all poibt you made abd I really appreciate you taking the time to compose your thing (can't find the word sorry)

    I will try again as words are failing and my autocorrect isn't helpibg me either

    Thank you x

  • On the issue over the kettle do a search for BREVILLE Hot Cup VKJ142, this is a kettle that you put the cup underneath the spout whilst everything is cold and press a button, this then delivers one cup of boiling water into the cup. The model number is quite important, there is a Breville VKJ318 which is more complex and more expensive, that is probably more than you would need.

    Works great for us for many years, before I had a SAH, and has been even more valuable since

  • Hi tarlachmoorhouse

    Thank you that's incredibly useful I really appreciate the time you have taken tesponding I will be sure to check it out


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