Moan & Rant Warning!

I'm off for a memory test this morning, I have no idea what I'm in for but I'm terrified! Every time I speak to a Dr. (not often enough) they tell me my mental state is the main problem I have but my therapist says it's my BI that causes my anxiety and low moods and mood swings. I'm so confused. It's as tho the Dr's are looking to avoid my BI being responsible for anything and I fear that's cos they know they screwed up my initial diagnosis (formal complaint lodged) and want to blame me and not their failure to scan me in A&E. They also worked from incorrect patient notes to 'treat' me and now my complaint is with the Root Cause Analysis Team.

From my/hubby's research the area of my brain affected by my ICH is linked to anxiety/depression but I've not had the chance to ask anyone about this and my appointments with a neurologist and neurosurgeon (Addenbrookes) are not until June and July, so again I'm in the dark not knowing what is the truth. I'm so angry that no-one wants to tell me what I'm to expect or anything about my BI, I'm just left guessing. I have a short history of 'mental illness' from decades ago, as a teenager, and it seems to be that it is coming back to haunt me as an excuse for Dr's to dump my problems on.

I was told by the only neurologist I've seen that I was to go home, learn to manage my 'mental health' problems and just wait to get better! I didn't have 'mental health' problems til I had my ICH and was mis-treated by the hospital but now I'm frightened of them, I believe justifyably so!

Also, I feel that I am being scored on a geriatric scale, I'm 47 but I am constantly compared to people of 87. Why am I not compared to who I was before or someone of my own age or others with an ICH? I was never admitted to a neurological ward only a geriatric ward, so of course I'm going to be more able than the other patients, I'm decades younger!

The treatment or lack of it is so upsetting, I just want help to understand my problems and someone to believe me when I tell them I was just fine before. In fact I was very active and mentally sharp, running large turn over businesses from 19 and working in Parliament writing and advising on up-coming legislation but now I'm unable to read an A4 page and keep context (re-reading this post is a real struggle).

I'm off to see a neurosurgeon but I don't understand why, when I didn't even see one on either of my hospital admissions, so what use is one now? They can't help me, they can't retro-operate, I needed one when I had my ICH not 9 months later!

Thanks all for letting me rant at you, it saves my hubby getting a hell of an ear-bashing.

23 Replies

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  • Hi LifelongLandlady,

    All I can say is sort of snap! My BI is a diffuse tumour causing epilepsy. I too had a distant past period of depression and that has been used frequently by GP's and neurologist as an excuse. Typically 'Oh thats nothing to do with the tumour' or 'it's stress and anxiety'.

    Until that is I saw a neurosurgeon who told me inoperable due to location etc. but he put me forward for a neuropsychological assesment which was about 3 hours + long with my wife present for the first hour. This included memory and cognitive assesments which confirmed defficits in the areas they would expect given location of the tumour and have been have so far had three 1 hour follow up appointments discussing what I was before, what I am now and startegies to cope with the 'new me' and ways to improve my quality of life. No cure though I'm afraid.

    The assesment did show moderate depression, severe anxiety and severe stress but as was explian this was due not by the though of the tumour but by the wiring faultd caused BY the tumour. It's so much easier to cope when you have an answer and tools to help cope with the problems.

    The neuro psychologist found it really helpful to have my wife there for the first hour of the assesment because she could get a fuller picture of the before and after changes, some of which I was unaware of.

    The tests themselves were pretty straight forward and something I would have eat up and finished in half an hour previously but took me 2 hours and excessive concentration to complete. Would have been longer had I taken all the breaks offered.

    I'm guessing that this will be the type of thing you are going for. I hope so because it helped me to stop doubting myself, which I had begun to do after so many 'it's all in the mind' (excuse the pun) statements from GP's and my neurologist (who I'm contemplating requesting a change from).

    Good luck with the tests and hope you get the answers you so badly need even if they aren't necesarily the answers you want.

    Take care and keep us updated on your progress.

    Wishing you well

    Sporan

    PS I've been accused by GP of behaving like a geriatric but probably more accurate for me than you as I'm getting far to close to 60 for my own liking lol ;-)

  • Thank-you sooo much I don't feel alone in this now.

  • I have no idea what ICH means (I searched and found some IT specific technical stuff and a disease of freshwater fish and I doubt it is either of those two things ;) ) but I think your situation may be further complicated by having an on going complaint lodged about the care you received.

    I can feel your frustration jumping off the screen and if you are at your appointment already I hope it goes well.

  • Howdy iforget, ICH = Intra Cranial Haemorrhage : ) Took me 4 goes to spell that right ! First time I looked it up I got the fish disease too !

    Hope you are keeping well x

  • Of course somewhere in the back of my empty head I suspected it had to be something like that...Thanks

  • No i'm not a fish :) but I can't spell either! Thanks for replying. I don't feel so alone now.

  • Hi lifelonglandlady

    once again contradictive diagnosis. Think most people with a bi suffer this. I am lucky to have a gp that admits he isnt sure as to which is the major cause.

    Is it mental state agrevating bi or bi causing mental state. It is refreshing to hear them admit they are not 100 0/0 sure.

    I am lucky that finally I found someone willing to cover all bases when treating me. It did however take about 2years after my bi to find a gp like this.

    Good luck with complaint all I recieved was a statement that maybe tgey should have treated me differently in hindsight.I to was not initially scanned and was only done because they were baffled by my symtoms as I didnt follow the pattern for what I was being treated for. Thats what happens when a consultant is certain what you are suffering from......even when his treatment fails to work.

    Heres a thought ....maybe you are suffering a variety of things ....a bi and mental issues....just a thoyght. Good luck.

  • Thanks for replying :)

  • Ditto! Have had experiences very like yours because about 25 yrs ago I suffered a depression due to a complicated bereavement. Hence I have ended up under psychiatric services that don't understand the frontal lobe brain injury and were treating me as if simply depressed. I had Neuropsych testing which along with the scans have validated the BI but because psych services don't have an understanding of BI and therefore there expectations and treatment was ineffective and not do-able for me. Likewise I ended up with a situation that I had to make a formal complaint about. I was put on various anti depressants for a continuous period of about 3 years but........they didn't work and just increased my emotional overspill and anxiety plus when the doses were increased things got much worse!!! Evidence I think that my mood problems were not depression but because I had been depressed in the past I was constantly told that it was! No one would listen to me when I kept trying to explain that this 'depression' was not like before when I was ruminating and thinking negatively but that my mood would crash for no apparent reason and my emotions were out of proportion to anything that was happening. It was awful and it was only because I got so frustrated, upset and angry with the CMHT that I decided to stop my meds because no one was listening or supporting me so I wanting my mood to plummet to such depths that I would reach my own solution! However when I weaned myself off the anti d's my mood didn't crash but improved. Which I think proves that I was being treated for a depression that I didn't have because it was a BI. I still have mood lability, but my mood doesn't crash to desparate depths anymore, and my anxiety and extreme insomnia has lessened, all to more manageable levels.

    I think there is such a lack of specialist BI services that too often we find ourselves inappropriately under mental health services who don't understand BI. Although I was Neuropsych psych tested by a Neuro psychologist because she was very part time she was not able to then do any sessions to advise on ways to manage the identified difficulties or therapy sessions to help me come to terms with what had happened to me ant this less able me. The CMHT referred me for psycholtherapy and after a long wait I have started sessions but.......guess what......she hasn't a clue about BI either and is analzing my childhood and for 'depression'. I provided info about my BI/dysexecutive syndrome but as yet she hasn't read it and clearly thinks that because I can string a basic sentence together regardless of some word retrieval problems that she can ignore my BI. I am sceptical as to how helpful this type of therapy is going to be if she won't acknowledge my bi plus I want to come to terms with what happened to me, that is my illness that caused my bi, whereas she was to analyse everything else and ignore that! Once more I fear lots of stuff is going to get documented about me which isn't helpful.

    So yes lifelonglandlady i can totally understand your need to rant because it is a postcode lottery as to whether the specialist services are available to us, to how well resources and funded they are and even though they are 'specialist' how much they actually are for BI.

  • Thanks for replying. I failed the simple memory test so now I'm off to a memory specialist for more indepth testing. Luckily my G is brilliant and doesn't think I'm nuts. :)

  • Glad you have a decent GP... mine is a star and fought for me to get onto the memory aids programme after the local PCT declined to fund it.

    six months of testing and strategies were exhausting but overall it really did help and made a big difference to our daily lives.

    I hope you find this a positive experience and get a helpful outcome too.

    To be honest I can never fathom why they make such a big fuss about mental health issues vs BI issues... surely they should know by now that having a BI is going to mess with anyone's MH at least a bit...and not just the person who sustains the BI but those around them too...

    Can I ask (obviously just because I ask, does not mean you have to answer ;) ) does your local hospital have a clear first line treatment policy that was not followed in your case?

  • I happy to answer!

    Yes! West Suffolk do have clear procedures for the treatment of first seizures and we have a copy of them gained under a Freedom of Information request. They were supposed to have scanned me immediately but didn't, so my window of opportunity for treatment was lost. Having got all my medical records I also know they had the wrong medical history, it says I have a history of fitting but I don't and the discharge time is wrong, they say I was there for 9 hours but they told me to go after 4 hours and there is no discharge summary. So all in all it's a complete mess.

    Luckily I have family that are Dr's & nurses so know all about the new Duty of Candour Act designed to stop hospitals covering up their mistakes.

    They really have messed up the wrong person here as in my former life I took on Parliament and won, gaining a change in the law and now have friends in high places.

    Watch this space & thanks for asking. It's in sharing knowledge we beat the system.

    :)

  • I am sorry you had to experience this but glad that you feel able to take this on and that you have support as you do this. Good Luck!

  • LifelongLandlady hats off to YOU!!!

    My med records full of lies and omissions but I can't prove it. The experts are always right apparently and unless they say something it doesn't exist, is not a fact = even when it's their opinion = no wonder I'm muddled!

    I know I'm injured, I know I'm now disabled but it's up to ME to prove it. Why can't they TRUST me: help me the ways I need (and want), assume I'm innocent and NOT a liar and for it to be up to THEM to prove THEIR case?

    In my opinion that would be FAR more reasonable: they are many and have far more resources than me, and that is (or should be) their job.

    Ahh, but they are all-powerful and THEY employ the docs and control the media.

    Little injured old useless broken immigrant me, excluded from networks and society, alone, how I can I ever hope my truth will prevail when their lies have become fact?

    Who are MY witnesses? Who would support MY side, MY version of events? Anyone? Nobody?

    Silence.

    Dunno who people think I am. Other day someone I know said 'are they wrong?' I said yes but not what I meant/wanted to say which was: I don't KNOW who they THINK I am so don't KNOW if they're wrong (or right). But the way they treat me (VERY odd) makes me FEEL they have been fed false info about me/things, or something, and don't ask ME. Feels like but people tell me I'm WRONG so often and have been made to doubt MY reality and question myself and what I truly KNOW. And that is psychological abuse of the WORST kind - plus sent to virtual solitary confinement = all together = torture. It FEELS like to ME, therefore true to me.

    But others say my feelings are WRONG, invalid, extreme.

    Me blamed for all of it and the guilty off scott*-free. UNFAIR.

    * where did that expression come from? surely not Scott of the antarctic or whatever man/place was, spelling?

    WHO WAS SCOT/T who got FREE, when and why?

  • Hi Landlady,

    Unfortunately in cases of negligence the medical profession tend to,like Paul Mc Cartney and the Frog Chorus 'All stand together' !

    BI often directly causes emotional moodswings plus the other deficits you have been left with may also contribute to low mood and frustration.This is a whole different you,with a new set of problems/challenges to deal with - that in itself takes some getting to grips with.

    Worry not about what others may try to wrongly label you with-we, as well informed patients are not village idiots and know the score.Let us know how it went. Angela x

  • Thank-you for replying to me. I can't let the negligence claim drop cos I worry for the next person they don't scan, it could be my daughter or husband. The system must change and maybe i'm the one to change it?!?

  • Yes, I understand the need for your claim-for the good of all.Had I the money and knowledge I would have pursued private care to get the tests that should have been done for suspected Encephalitis during the acute phase which may have given me evidence.

    I wish you the best of luck x

  • Hi

    Don't Panic the memory test's are pretty straight forward

    I persuaded my GP to refer me to Neurology 50 years after the BI/ coma

    I was actually quite relieved to have my short term memory loss confirmed

    At least I had clarification from the neurologist that a BI can cause long term memory loss

    Good Luck

  • Sorry I read your post wrong - I do this regularly

  • I would agree with most people here that a neuropsych assessment has been probably one of the most useful things I have had done...it revealed that my issues were definitely real, even though the single MRI I had done initially was 'perfectly normal'. (Turns out 4 years later that wasn't the case, but the aneurysm that has now been spotted is 'incidental' and nothing to do with symptoms).

    Those of us with a dianosis of ME/CFS in our medical history are used to being treated by at least 50% of the medical profession as if any symptom that arises is all in our heads. I have had seizures comprehensively ignored even when one resulted in my head being cracked open. I have been lucky enough to have a neuropsychologist in charge of the ME team here in Lincs who has been able to support me through the change between my pre-illness state and now, and through all of my questions as various neuro symptoms have come and gone. She has helped me deal with a situation which would, undoubtedly, have led to depression, had I not had her to walk through it with me.

    After two years of regular monthly therapy with her, not only do I consider her my greatest health advocate (she has written to my GP to support my request for referrals to the National and now to Sheffield, and to the DWP on benefits claims), she is also able to categorically state to people that, even though I was having counselling just 18 months before I got ill in Aug 2010 because of a raft of issues across my wider family- none of which involved me directly but all of which left me holding too many reins for too many bolting horses - what is wrong with me now is absolutely not connected, and is nothing to do with my mental health, which has been, and continues to be, absolutely fine, in no small measure thanks to her support I think, and notwithstanding the very changed circumstances I now find myself in.

    So just to say that whilst any mental health label or intervention can seem as dismissive, sometimes it can be very helpful. There is a lot of reassurance in having someone there who can agree with you that you are not imagining all this, and if it has caused you stress and anxiety that is to be expected, 'cos that is what it would do to anyone, and that actually, you are coping really very well indeed.

    All the best for your assessment and your continued search for answers...

  • I've always felt frustrated that medical people who don't deal directly with brain injury don't understand our problems. That I have to ask for something to be written down or that what they want me to do is too complicated. That I was not feeling low because I am a woman of a certain age, but because I lost my job, driving licence, friends, ability to run a house and much more.

    It would be better to get brain injury people in a tailored group for CBT or Mindfulness, so you can share the experience with others who can't remember names or faces or what we were doing last week.

    It's good to have a group of friends who understand because they belong to the same elusive club. And good as these forums are, nothing beats meeting up for a coffee with a group of brain injury friends when you've hit a rough patch.

    I hope you get some useful results from your tests. Mine showed up significant memory attention and speed problems. It was good to see the scores in black and white.

  • Stardrop: I went to meet with other ABIers today here in France! It's GOOD, finally found bit like Headway here. Too tired to write now, loads to say, it's exciting!

  • Just wondering how the testing went...suspect you may be resting ;)

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