I had a TBI in 2009 and it completely changed my life! Causing permanent disability and as a result I have been unable to work since.
My care was mismanaged and delayed for months after it happened.
My life is now about pain management which requires numerous medications.
In 2009 brain scans showed bleeding and swelling, abnormalities in the frontal lobe and numerous abnormalities throughout my brain.
My gait, memory, concentration, and various other symptoms have been persistent for almost 14 years now. I have tinnitus , vertigo and Anosmia also since.
The doctors have all said that I have to account that I am permanently disabled and they can do nothing else for me.
About 18 months ago I started to experience tingling and numbness in my upper face and going to the top of my head. There is a sensation of sweating and I feel very hot and agitated. I was passed from ENT to Neurology to investigate the new symptoms.
Again more MRIs and now they have said that they have looked at all of my scans since 2009 in an MDT meeting and there’s abnormalities still showing the same, however they are now saying that they are older than 2009 and the head injury in 2009 caused no injuries!
Yet prior to this mugging and attack I was a successful professional who worked hard and never had any illnesses or problems.
The abnormalities showing on the MRIs are in exactly the same place as the injuries caused in 2009. I know 100% that I have never had any head injuries prior to 2009.
I am totally confused, exhausted, frustrated and absolutely gutted that I have been through years of doctors not being able to fix me. Being passed around departments and being told that I have to accept this is my life now.
I am a strong person and never give up pushing myself, regardless of what life’s thrown at me I have always been able to bounce back. This however I have never been able to beat and I have tried everything!
Has anyone else had a similar experience? I honestly don’t know what to do!
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superstar79
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Hi. This sounds like an insurance point of view. I was told by a consultant once that my injuries could have been caused orior to my rta.
Altough i didnt suffer any injuries prior my rta this opinion took some overturning. To me this sounded stupid being that my medical records showed no previous trama until my rta, and that this arguement delayed me being forwrded on for treatment.
It seems medical consultants do mot always bother with facts but are busy not being pinned to a diagnosis.
Hi. I am in the UK and our NHS services are free. It’s not about insurance possibly incompetence!
I am not sure what to do anymore! My local hospital have said get another opinion at another hospital 🤷♀️ They are not willing to admit that they have messed up my care for many years.
Same here im in uk. Hospital will never accept a mistake. I was cohearsed into signing myself out after my rta. Then all notes were mysteriously lost. It took the possibility of them being sued for them to find my notes again.
Try a second opinion. Our nhs is great but unfortunatley they can be to scared of being sued instead of admitting a mistake and rectifying it.
In my case the nhs added a year or two to my treatment due to passing the buck. When all i wanted was to get better
Apologies I get what you mean now! I have been given advice leaflets from the NHS to contact the government health department and complain.
Honestly though I have read what they are able to do and it states that they can not get a hospital to change its diagnosis. So, I am looking into taking legal action but I am not sure who to contact. My neurologist has made numerous errors and treated me like #### I have contradictory information in writing from CEOs, neurologist, doctors and other medical professionals dating back years. It’s all just been thrown up in the air with this latest “diagnosis “
I remain none the wiser why or how a DNAR ended up in my notes at the local district hospital where I was resuscitated. My wife has no recollection of discussing my end of life wishes with anyone and the history recorded that described my former profession had obviously been taken from somebody else as it was years out of date! When the staff nurse in London found the DNAR and queried it (I clearly wished to remain alive as I was in the CCU!), I protested and she removed it. They had also recorded the wrong family member as next of kin.
Thank you, I am exhausted with all of it but this is my life that they are playing around with! I have never been one to not shy away from doing what is right. This will be rectified by them regardless of how inconvenient it may be for them! Don’t get me wrong I fully appreciate how hard the majority of the NHS work and the huge amount of pressure that they have been under. However, they are only human and we all make mistakes. It’s not good enough to just wash their hands of my case or anyone else’s!
bless you, as if you havnt been through enough already 😰I,m the same, had major surgery 3 years ago& never been right since! Nightmare! The things I had done in surgery are causing me MORE stress! It wasn’t worth it it saved my life to a point but it also took it away 😰
Hi, I think the NHS is useless where brain injury diagnosis and rehabilitation is concerned. Even the Tory government agreed last year when they passed the ABI Bill. They said the whole public service sector was unfit for purpose regarding ABI. It's about the lack of funding, realistic research and expertise.
Now for something more positive.
Quite a few years ago a friend of mine had a whopping brain injury and he slowly got back on his feet, recognized his injury and how it affected him, then accepted it. Afterwards he experimented with what he had left and grasped as much of the world as he could get. He realized there was a whole lot of world to grasp and just kept going. Here's his youtube channel.
It’s draining to say the least! I am a strong minded person but this has been years of passing me around departments. Damage to my jaw, nose and neck have been found in the last couple of years. That was missed in 2009 because these were not checked. All of this has been diagnosed and written down as being caused in 2009 but missed. I have contacted the CEO of the hospital and the answer I got was that different doctors have different opinions! When I asked if all of these doctors had misdiagnosed me the reply now is get a second opinion in another hospital if I am not happy.
Superstar, I am sick of medical neglect and the doctors who have failed me over the last four years. Do no harm ? Does that mean do nothing?! I am wondering if a complaint to the ombudsman would gee them up….
I will be sending a complaint once I get the final response from the CEO. However the Ombudsman can do very little to help me from what I have read. I am looking into the legal route.
I asked questions about my hospital care and the trust chose to treat my enquiry as a formal complaint. The first investigator appointed promptly resigned after reading my accusations! I don’t know whom they appointed next because a very shoddy job was done. The phrase “there is no record of” appears a lot in the findings so did the malpractice happen or was it simply not recorded? I was aware that I needed six units of blood during and after my surgery but none of that is in my notes. I was also curious about a drug trial I had apparently agreed to whilst in a coma!! I had to suggest to a posse of doctors that a brain scan might be a good idea to determine the extent and nature of my ABI! They got their revenge by arranging the scans over a lunch hour on the ward so I was deprived of food as a punishment. I came to the conclusion after my experience that there are many abusers hiding in plain sight.
I will send a complaint to the ombudsman. However there’s very little that they can do from what I have read on the website. My next course of action is the legal route.
A. U were very lucky to live!! B. Seem to have the needed survival character, find the part of the old u to aid your health on a very challenging future!! Like me, u need to accept the limitations u face, build the new you!! Put it all behind u. Challenging for certain!! I could not move on?! Until, with counciling. 22years on!! Life is a challenge! Learnt to SMILE to spite my tbi!! Good luck, would love to aid, hear of your progress!! Take care& don’t give up!! Our lives are a different challenge?!!
Thank you my mental health is as strong as it ever was. I have been through far worse and I will never give up! It’s taken me many years to accept this is who I am now and yet I will always push myself to fight this and get my life back!
Hi. What diagnosis have they given you if you don’t mind me asking? I am utterly demented with the neurologist! The abnormalities are clearly shown on my scans and all of my symptoms started after the injury.
I have just read your post on your page. You certainly have had an awful experience. I can relate to some of what you posted.
Life’s flying by and I feel as though I am stuck in time! My mental health has never suffered with depression as a result of my TBI. However I have fought this the whole way and am determined to beat it. No matter how many doctors tell me that I have to access that I am permanently disabled now. So I need to live in constant pain 24/7 for the rest of my life!
I was thrown in the air when I was mugged and attacked and I landed on my head. It knocked me out for I don’t know how long. I woke up and crawled to work and refused any medical treatment form the paramedics. I collapsed at home two days later and was sent to hospital but they messed up and sent me home. Missing the bleeding and swelling on my brain. I had to learn to walk and talk again which I don’t really remember the first two years after it happened.
I have the same problems with pain, severe brain damage, tinnitus etc etc etc etc.
The hole lawyer, insurance thing is so corrupt now that I’m determined to get to the the Sole less people just out for pure greed. Even had Psychologists, Lawyers, Barrister, and Neurologists lying through there teeth about my case taking advantage of my TBI that I won’t remember.
NHS is hard to find help when everyone can’t be bothered with difficult cases such as ours.
I thought when injured the top guys would love getting there teeth into something that’s new and difficult to assist with, but Nope, they can’t be bothered.
My big problem now is Lawyers reading what the lying Doctors said and telling them there lying. Where the new dodgy lawyers take the liar doctors as gospel. Being dodgy themselves as well.
Insurers since my injuries have been more evil because of my very extensive injuries that I’d like to take to Supreme Court and get them for wrecking any type of future I may have had.
I phoned BUPA etc asking for help. But with past injuries causing problems. They won’t touch me with a barge pole.
But one nice lady said one thing
YOU CAN CONTACT SPECIALISTS DOCTORS AND PAY THERE FEE TO BE SEEN. YOU MAY GET A REFERRAL THROUGH YOUR GP AS WELL.
So you choose the guy. And that’s the best plan.
Tell me if you find a specialist website for Doctors etc. I’m still in the mode of remembering that I keep forgetting to do and lost post it notes reminding me. Dohhhhh.
They sound like corrupt little liars to me.
I was confused for years why would they do this, the explanation turned up which was because they can. Just Pure Greed.
This message just reminded me but attention span of a7 year old, I’m still stuck doing stuff I should have done 10 years ago.
Brain injury corruption with lawyers, barristers, insurers is rife.
Get it sorted yourself to have the evidence with any interference from corruption.
You’ll notice from hospital notes that your diagnosis and what specialist doing reports write are totally different.
So get all hospital notes for your own sanity.
Buy your xrays also. You won’t know but there a big help and I think will all be on USB now.
Each hospital you may have visited has notes with possible x Rays. So try to remember where you have been or went.
Good luck.
Also you can get an EEG that’s £800 -£1,200 that shows specific brain damage. That I also need to do. But be warned it can cause epilepsy if your susceptible after your injuries.
I prob have to take the risk. I’ll watch a strobe for 20 minutes to see if it sends me more puddled.
Thank you for your reply. I have a very good legal team that are now looking into it. They have all the documents proving my case has been poorly managed for years.
As far as the hospital are concerned they have washed their hands of me because I have complained about “top Neurologists opinions” Those same neurologists that have given me the diagnosis numerous times of TBI related injuries.
I hope that you manage to get the outcome that you are looking for.
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