How the hell does someone get the doctor to listen when speaking about my historic BI...since a recent bout of Bells Palsy I started to mention the permanent dent n crack I have in my skull n how I struggle eeeveryday. Hesent me for a CT scan on my head he said your brain looks fine don't worry He then went onto the problems with my left leg n sent me for a lumber MRI I'm Still waiting on result 4 months later. Why won't doctors look at BI..how do I get the right test on my brain as they sure are mixed up or dead in places.
Any info is always greatly recieved 👍
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Survivor37
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You say historic bi. I was told the full affects of my bi would never fully be understood because I didn't get a full diagnosis 7ntil nearly 2 years post bi.
No one really connected the dots to all my problems until I went for counselling and on examining my notes was astounded no one had really made the connection.
Yes they had got me walking and talking but other cognitive issues were unable to be explained.
Each specialist had taken what they were treating me for in isolation. It was only my counsellor and GP that started to collate my injuries.
It was no real leap as initially I was involved in a head on rta with a car.
A neurologist then looked at my results and I began to be treat for having a bi.
I'm afraid it's a case of keep pushing for help and if they feel there's no connection ask why not. If they can't answer that then maybe they will take you serious even if its just to shut you up.
You see to get things rolling you have to be a pain , if you sit quiet you may just get ignored.
For all those saying the NHS would never do this , we'll unfortunately maybe due to resources it happens.
I apparently when in between passing out after my rta was a very obnoxious patient, incoherent and bordering abusive. It says all this in my notes oh and I kept vomiting and making a mess. The solution was to have me sign myself out of hospital ( unknown to me) to become someone else's problem.
I asked questions and they decided to treat it as a formal complaint. The first “investigator” (as I had been employed as one before retirement, I did wonder how the NHS gives anyone such a title) resigned immediately, presumably because what was alleged was so shocking? When the letter detailing the findings arrived “there is no record of” or similar featured in it quite a lot. Read that as the NHS is cr*p at record-keeping. I am still staggered I had to suggest to an assembly of doctors that it might be a good idea to scan my brain to determine what damage had been caused. When they got the results nobody sat down and discussed them with me. I know I have a shrunken brain now but not how it could affect me in the future? Do I have Parkinson’s or Alzheimer’s to look forward to??
I'm coming up to two years of investigations. They have ruled out Alzheimer's. They think that there is something, but need to monitor over time to narrow down the specifics.
Records are generally better than they used to be due advances in technology. The old paper records were infamous for getting lost as pages became detached, each discipline held their own folders with rare cross references. Hopefully now there is at least access across disciplines, maybe not inter-service yet (NHS - SS), but maybe one day?
Thankyou for your comment mdoctor told me to send a request for my full Hospital Records as Doctors records only go back as far as 2005. My accident was way back in 1983 so I'm not so sure it will still be on record I know my hospital file is huge due to the outpatient appointments regarding my 2 closed fractures of my tib n fib post BI...nothing was ever followed up regarding my head injury..the bump on my forehead n blood clot in my head came out my nose..everybody was he's fine now 🤣I will continue to push forward with this issue👍
Paper records are transferred to microfilm (subsequently scanned to computer files), and retained until eight years after death. But they can only copy what is present, if there are missing pages (sometimes filed in the wrong place), it is unlikely they will reappear.
Ahh thankyou for this I didn't know anything really just what I call a stab in the dark trying to find the right road to my records..my mum's info of my accident is limited as it's so long since but I do know from her that I was in intensive care overnight unconscious with a fractured skull a cracked pelvis n tib n fib fractures and spent 9 days in children's ward no memory of it but bare the scars for sure...those injuries will I think be defo on my records it will make interesting reading once I've tracked it down..thanks again 👍
I've struggled with my BI since I were 10 I'm now 48 I thought through all that time not one person has been able to join the dots as to why I've struggled all my life. They fixed my left leg and all focus was on my leg nothing was ever followed up regarding my fractured skull. All I recieved was a rub of my head n everybody saying he's fine they've fixed your leg which everyone could see but the real life changing head injury was just swept under carpet. I'm blown away by the amount of people that struggle like I do with historic BI..thankyou for your comment I hope I haven't gone of track 👍
Most doctors know very little about brain injuries, if anything, therefore they don't talk about them and try to move on to something they might know something about.
CT scans are of limited usefulness, when it comes to brain injuries. The fact he pronounced "your brain looks fine don't worry" is very revealing as to the doctor's ignorance regarding brain injuries. Possibly the gold standard to see what condition the brain is really in would be a SPECT scan. You can read more about that here: amenclinics.com/services/br...
Another very experienced, board certified neurologist and a neurological rehabilitation and concussion traumatic brain injury specialist with over 250,000 patient encounters with brain injury patients is Kester J Nedd, DO. In his book "Concussion Traumatic Brain Injury From Head to Tail", he covers how to more successfully deal one's journey with a brain injury. There are 73 pages of references in his 625 page book. It's safe to say he probably knows more about brain injury than most all of the doctors most people see, when attempting to get the help they are seeking. He developed what he calls BHET "Brain Hierarchical Evaluation and Treatment". This approach utilizes the concept of organizing the subject of brain injury in various dimensions and domains to evaluate and treat patients with brain injury.
Oh, in answer to your question about why won't doctors look at BI - according to Dr Nedd, in his book, it isn't profitable enough. A pretty damning observation as to the nature of our so called modern medicine system.
I wish you great luck in finding the care you are seeking.
Thankyou for your comment I've been pushing them since I opened up about my BI and I've only got as far as my leg with him. I had a CT earlier this year and my doctor rung me saying your your brain looks fine he did say that the scan picked up something above my sinuses but he didn't tell me owt else. I already know what is above my sinuses it's the old skull fracture. It's so frustrating as every man n his dog knows about my BI and how I struggle but my doctor says I'm fine🤣🤣🤣I will push again for sure I will get the right scan eventually👍
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Even people with brain injury don’t understand them
