People can have brain damage and not know it - Frontal Lobe Paradox.
People can get misdiagnosed with amxiety/depression/PTSD... and have brain damage all along.... theconversation.com/frontal...
I couldn't comment on social workers and care managers but I can categorically say that both GP doctors displayed a open and honest lack of knowledge around brain injury and due to cut budgets, decided to progress with the anti-depressant route with deaf ears, knowingly, while I sat there and repeated my symptoms, that I knew I wasn't functioning fully at the time, ignored me, ignored my statement I was not depressed, and simply sat there, saying, I have offered you what I can do within the limits of what I have to offer, take it or leave it. You know what, I'm so glad I left it.
Both GP's were knowledgeable people. Both doctors need training on brain injury recognition on patient presentation. Oh and if any GPs are reading, please don't mock your patient when a brain scan comes back with no tumours. It is condescending, incredibly demotivating, it strips away any form of apparent support from the NHS community and strongly makes you wonder why you pay taxes into the NHS. Training. Training. Training.
Listen to your patient. If they say brain function is not as it used to be, they know what they are talking about.
Perhaps there is no interim place within the NHS where doctors can refer, like an outpatient brain injury assessment by people who are not charging huge amounts of money - for instance, the neurological physiologist from within the physiotherapist specialist area.
My other bugbear is that according to society, once you have had a brain injury, you are labelled for life as inadequate compared to those who have not. The assumption is, no-one recovers to full function. This is totally NOT true. MORE awareness training is needed to the wider public about the different types of brain injury, how amazing the brain is at healing, how physiology and spinal misalignment can impair brain function as well as chemical imbalance. School - biology lessons - that is where it belongs - we only have one body - kids need to learn how to look after their brain - not be addicted to moving images of physically impossible movements in cartoons, but spend time in meditation, in martial arts and yoga, strengthening their body, to support good brain function, doing crosswords and Sudoku's to keep the brain active instead of the passive habits of todays kids. My nieces and nephews become zombies when a TV is on. I dread to think how their brain might recover after a car accident. To be fair it wouldn't do so well. An active life supports a healthy brain, ready for any oncoming brain malfunction.
Standing down off my soap box now. Good post Silly Phil, touched a nerve! : ) Have a great day!
Great reply. It took me 6 years to get a proper diagnosis. My accident was 20 years ago. I fell off my bike, landed on my head, was found unconscious but having a seizure by friends, helicoptered to hospital in Brisbane but released the next day with no warnings about possible problems (I have no memory of all of this) It took me 6 years of saying that something was wrong & I couldn't cope but didn't know why, 6 years of 'experts' saying it was just anxiety or depression or PTSD... to get a correct diagnosis. If only my then wife & I had been given this back then it could have avoided my life falling apart and ending up alone, attempting suicide 3 times and ending up in a mental hospital. Sigh. So if you know of anybody who's been concussed & now struggling....
I'm so glad you got a proper diagnosis Phil. I hope now you can rest knowing your sanity is intact and you are doing the right things to support your on-going recovery. Best of luck with everything and ride the mare steady as my grandmother used to say
Good post Phil. I think H has said it all. But on a lighter note, I'm relieved to see that difficulty resisting temptation is a frontal lobe issue ; I might quote that next time I succumb to a Mars bar ! x
I just posted a reply to RecoveringH, hope you can see it...
I see it Phil. Your past 6 years make my past 6 years feel surprisingly uncomplicated ! So sorry you've had such a struggle getting a diagnosis and the support you so badly needed. And your reminder re. complacency can't be echoed often enough. x
Nope. It wasn't my last 6 years. My accident was in 1998, 20 years ago. It took 6 years to find out why my life had fallen apart, get a diagnosis in 2004. But it has been a battle since then too. Trying to get people, including the DWP, to Believe. I should write a book. But I can't concentrate long enough to do it!
Sorry Phil ; meant the 6 years post accident compared to mine..... 😦 x
I've had both very good GPs who've admitted they know very little or a particular GP who more or less said I'm lying and criticised me for being pathetic (not their words).
Absolutely no doubt frontal lobe injury injury, however 3 consultant Neurologist told me I was being over concerned and I didn't have my described symptoms (imagination). This was after talking to me and I came across as articulate with reasonable intelligence. I can fully acknowledge to risk of being self monitoring and thinking "Before that wouldn't have happened" in fact I'd made that point to these consultants myself.
It was 4 years before I even heard of Neuro-rehab and as I moved around the country 12 years before a neuropsychologist produced test result, which gave some explanation of my particular experience.
Can't say anything about Social Workers but certainly people in general do work on stereotypes once they know you've got a brain injury, but if I don't tell them at first they think I'm joking later.
Some very good people stand out it terms of listening and being open minded, 2 Neuropsychologists, a GP and the disability Employment Adviser at the Job Center and that's over a 16 year period, beyond that just some of my previous friends.
Great reply. Sad, familiar story. I just posted a reply to RecoveringH, I hope you can see it...
Not sure where you mean I'd like to see it though
Here is my reply to RecoveringH... It took me 6 years to get a proper diagnosis. My accident was 20 years ago. I fell off my bike, landed on my head, was found unconscious but having a seizure by friends, helicoptered to hospital in Brisbane but released the next day with no warnings about possible problems (I have no memory of all of this) It took me 6 years of saying that something was wrong & I couldn't cope but didn't know why, 6 years of 'experts' saying it was just anxiety or depression or PTSD... to get a correct diagnosis. If only my then wife & I had been given this back then it could have avoided my life falling apart and ending up alone, attempting suicide 3 times and ending up in a mental hospital. Sigh. So if you know of anybody who's been concussed & now struggling....
A visitor reading that may have trouble believing a service would be so poor but I've heard many stories, which resonate with some of mine and your experience even though we're living on the other side of the globe. I don't think I would have chosen to be in your gang.
I feels there needs to be research about all the fallout from poor service along with the type of research I was invited on, "Assessing positive outcomes following Neuro-rehab".
I'm not sure about the 'we're living on the other side of the globe'? Where are you? My accident was near Brisbane Australia in 1998. I lived in Oz for 10 years. I moved back to UK in 2000, a year or so after my accident but didn't get a diagnosis until 2004. So I had problems getting diagnosed on the 2 opposite sides of the globe!
I'm the North UK, I'd presumed you were still upside down.
Nah, my life in Oz fell apart. Lost my marriage, new house I'd just built, friends, job.. came back to UK to stay with family whilst I tried to find out what was wrong with me.
16 years so many, ahhh moments and I've just remembered one. Not a consultant but a Dr. in the Neurology department gave me the serial seven test when I raised concerns about symptoms.
The serial seven test had been used by ATOS and at Tribunal I'd persuaded the Judge that it was an inappropriate test for a brain injury, it's used as a test for dementia. The Dr. gave me a condescending look and explained he was the expert when I passed the test with ease but raised my doubts about it's validity.
I think you can find info out there talking about this test and it's misuse.
Ile this was describing me
Lots here I can associate with. After my fall I went back to work as if I was OK. It took me a few week to go to the doctor and she send me to have scan which showed a small bleed. I injured my head at the front but was more concrned about the facial abrasions. The only symptoms I had were a persistent dull headache which I mistook for hayfever head, and anger out of nowhere that cost me my job but I didnt mnd as I was ang'ling at it anyway.
2 months post operation, I am feeling as normal as I always have apart from being a bit unsteady and not being able to cope with overheated shops.
I really appreciate this foru as I havent come across one ehre in NZ. I know I've said that before but I really mean it. Some days I wake up and it's a real effort to get up because Im in a kind of limbo job-wise and future-wise.
Monitor yourself. You may be able to 'appear' like your old self but you MAY find that you struggle with noise, bright lights, can't deal with overstimulatuin, need more rest as you get fatigue, have problems sorting, remembering what you're doing, organising, prioritising what to do next, planning.... I had a feeling that something had changed, I didn't feel right, things became more difficult, I got more argumentative.. Oh so many symptoms. Read Headway Booklets and see if you identify with any of them. Good luck.
Thank you. I had a job interview today which went really well. I didnt panic in the small room.
I clearly need to pace to pace myself. Going to doctor tomorrow to try and sort lightheadedness.
Hi i have got frontal lobe injury following a large grade 2 tumour subsequent infection which led to me losing part of my skull 12 weeks ago i had titanium plate fitted three major ops within 8 months i am having on going neuro therapy this has changed me as a person i really have to think what i want to do feel frustrated much of the time has effected my daily life struggle to stay awake lost my get up and go completely .
I hope you recover well. But you may have brain damage symptoms including debilitating fatigue, confusion, lack of motivation, problems organising, sorting, planning, prioritising.. basically organising your day. Read Headway booklets and get help/rehab if you need it. Good luck.
So those types of injury don’t show up on MRI?
Nope. Not necessarily. My scan 20 years ago after falling on my head showed no rips, tears or bleeds. So I was released. I went back the following day with nausea, blurred vision and excruciating headache - they gave me paracetamol. Apparently that was my skull swelling inside my skull causing more damage.
Wonder why they tell people otherwise?
Surely if the technology has its limits then why not just state that fact?
If you are basing a diagnosis on a inconclusive test then filling in the blanks by suggesting the patient has a mental health problem if they are still exhibiting symptoms, to me that seems like a disservice to the patient.
Especially if there is no evidence of mental health issues prior to the event that may have caused a brain injury.
I find it interesting that Psychiatry is the only branch of Medicine that doesn't think there's any point examining (scans etc) the organ that they're trying to treat! Or accepting that a severe blow, concussion, coma etc CAN cause temporary or permanent damage but leave no sign. All they want to do is ask you about your childhood etc. I ended up in the daft situation where, 6 years after my accident, I was tested and Diagnosed with acquired brain damage but the Neurologist wouldn't accept that it interacted with my preexisting anxiety problem/disorder (cos that wasn't his area of expertise) AND I was diagnosed by a Psychiatrist with a chronic anxiety disorder but he wouldn't accept the Neuro's diagnosis of brain damage as it wasn't his area of expertise - Aaaaghhh!!!!
I nearly laughed I had " 'Symptoms' of CPTSD but it could be my brain injury rather than the experience".
SillyPhil, thank you for posting this. I'm sorry you have had so much difficulty and then the stress from the NHS. I must say that I can realate almst 100% to your experience and symptoms, epecially the neuro vs psych sitution and the interaction, plus I have balance isues and no one can seem to take an overview of the lot ans see how they fit totether. I'd like to get into it more but my brain just can't handle it. Do you have a diagnosis now for your brain issues?
Yeah, of sorts. Aquired Brain Damage and pre existing Anxiety Disorder. I guess I'm just ME
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