Help with seeking diagnosis

[Pinklady48]

Hi,I posted a while ago here and then didn't manage to come back. Will start from the beginning...dad had a heart attack in Aug 23. He collapsed and hit his head when he fell. Priority was heart so head lac was glued and standard neuro exam done. No concern, no scans and no suspected concussion. Fast forward to Dec, was doing fine but slightly forgetful. January at heart failure clinic he mentioned this and had a CT scan which found no evidence of stroke. MRI requested and was found clear, no issues. From March till now he has severly deteriorated. Has no past or present memory, cannot do any cognitive things, doesn't know who anyone is and is continuing to deteriorate. Brain injury clinic said not brain injury, old age psychiatry said not dementia due to rapid deterioration and are referring back to neurology. We still don't know what it is that is causing this. Now referred for a further CT and possible lumbar puncture. I just want to know what this is and all doctors seem stumped. Usual bloods, medication check etc have been done and no concerns. We just keep being told they don't know what is causing it. My concern is he continues to deteriorate and we lose him completely. Can anyone help how to move this forward somehow or have any suggestions? I feel like I am losing it trying to get to the bottom of this.

[Pairofboots]

The brain is a mystery, even to those that are supposed to know. I have been through three years of investigation, scans, tests, even the lumbar puncture, was told at one point that I had early onset dementia, only to be told later that there were no markers for a dementia, so still no definitive answer, now four years and counting. I know this doesn't give any answers, I just illustrates how difficult the brain is. I've come to the conclusion, sometimes there are no clear answers. I hope that your father does get some answers.

[TreesMTBI]

Hi Pinklady, I’m sorry to hear about your Dad. Sounds really difficult for all of you to deal with. It sounds like a neuropsychologist specialising in brain injury might be worth pursuing - they test functioning of all different parts of the brain, because even though nothing is visible on the scans, the neuro pathways in your dad’s brain will have had a real shake-up and gone haywire. A concussion is also labelled as a mild traumatic brain injury to indicate that damage of sorts has been experienced. If you’re waiting for a neurology appointment, they’ll be the ones to refer onto neuropsych and that might take a long while (well, in my experience anyway) but I don’t know if it’s available for you to seek private treatment to get a neuropsych assessment done yourselves. That might shed some. Not sure what the psychiatrist did re dementia but perhaps not specialised in terms of brain injury?

OR you are entitled to second opinions in the NHS. The PALS team at the hospital can help with that, patient liaison team.

Really hope you find some answers soon.

Best future healthy wishes for your dad and for you too.

Tx

[TreesMTBI in reply to TreesMTBI]

Just realised you’ve already been through the brain injury clinic sorry I might be telling you things already tried and tested .

I’d pursue a second opinion for sure as it does sound very much like brain injury symptoms x

[Pinklady48 in reply to TreesMTBI]

Thank you, I really appreciate your advice. I think a second opinion from brain injury may be an idea. They had a case conference on the brain injury team and came back to say its been ruled out because symptoms started about 5 months after the fall and have dramatically got worse. It's so frustrating

[TreesMTBI in reply to Pinklady48]

Sorry, I ‘liked’ your post and that seems like the wrong thing to do!!! That does sound mysterious. There are more detailed scans available I think- a functional MRI - has your Dad had one of those. I don’t many are available on NHS but maybe worth researching. My neurologist told me that regular MRI cannot pick up on the minute changes in the brain after TBI so perhaps a fMRI will. Maybe something to try for as well as second opinion. I’m wondering if anyone on this forum has lived experience of what your dad is going through, because as Boots says, every one of us on here have had such differing experiences- plus the fluctuation in symptoms can really be so dramatic in brain injury.

[Pinklady48 in reply to TreesMTBI]

We suggested the fMRI but we're told it's unlikely to show anything. Considering trying to go private. I feel like a second opinion from NHS is just going to be so much longer again 😫

[TreesMTBI in reply to Pinklady48]

Hopefully you’ve got some good stuff to go on from pinkvision now

Tx

[lcd8]

Sorry, I don't have any good advice. But my heart goes out to you. As others have said the brain is such a complex and mysterious thing. Its also under-researched and the medics are still finding out new stuff all the time. I wish your dad all the best and hope you both find some relief soon. xx

[pinkvision]

Hi looking through your description your dad may have two types of brain injury, first from the heart attack where a lack of oxygen to brain (hypoxia) is well known to cause a reduction in function. Secondly the head injury, concussion, otherwise known as mild traumatic brain injury (mTBI) or after a few months post concussion syndrome (PCS). mTBI/ PCS is notorious for having a delayed progression of symptomology. This type of brain injury (mTBI/ PCS) is an axonal injury (axons are like the wiring that links up the functional zones) and has the characteristics of a chain reaction where when a group of axons get damaged they spill cellular contents into the surrounding brain tissue; the cell contents are toxic to other neurons and it causes them to spill their contents and on it goes. The body's immune system stops this progression after a few months and the result is the loss of the functional connections between the functional zones.

The timings you give are pretty much spot on for an axonal injury.

The hypoxia may have caused what is called a sub conscious brain injury, meaning the potential damage is not distinctly evident, however coupled with the progressive effects of mTBI/ PCS both together would suggest the symptoms are a combination of both.

As for getting a diagnosis and rehab unfortunately it's a health authority lottery, as many here will tell you, some have good brain injury assessments and some rehab while other have a few and many have none other than classifying the symptoms as 'psychological.'

Here's something you need to know a CT scan cannot identify an axonal injury, an fMRI scan is of no use for axonal injury but may be of use for hypoxia because what it shows is the amount of oxygen use in a functional area. A standard MRI scan can only show lesions caused by acute damage to tissue, some axonal injuries do show up in these months after an injury because of the axonal chain reaction. The only scan that can show an axonal injury is a DTI scan (diffusion tensor imaging). However a DTI scan can only show diffusion (leaking or spilling cell contents) while it is happening which is in the second third and fourth months post injury.

The one to go for is the MRI scan to see if there are any lesions from the progressive damage caused by the chain reaction from the axonal injury. This would also couple with the potential effects of hypoxic injury because if the oxygen flow to neurons lasts more than a couple of weeks the neurons die and in their place may be lesions. Add the two potential lesion areas together and there may be macro lesions. The detail seen in an MRI scan is at the macro level (as seen with the naked eye) but if the lesions are less than 2mm they cannot be definitively seen.

All a bit complicated but after 5 - 6 months the damage is cleaned up by the immune system and it is irrelevant what shows up in any kind of scan because what is left are the functional deficits, these can be tested for on the cognitive level by a neuropsychology test. en.wikipedia.org/wiki/Neuro....

And it is a test you need to get not an opinion, these tests are complex and last for hours and are repeated in various guises over a period of three months.

Another test your dad should have had by now is a hypopituitary test to check the hormone levels that regulate body function and can affect the emotional and cognitive functions as well. This test is relatively new in the NHS but it is a standard test following a head injury according to the NICE guidelines (most health authority guidelines are different though) and you only need to ask for one and state that it is in the NICE guidelines.

Head injuries also cause issues with the cervical/ vestibular/ ocular reflex, all served by the cranial nerves. Falls do not commonly affect these, it is mostly caused by whiplash injuries but falls can cause issues here.

The thing that the NHS does not test for in any serious way is sensory processing, smell, vision (other than the eyes), hearing (other than the ears) and sensations from the body (internally) and external stimuli sensed by nerve receptors on the skin. No one really thinks about these issues in the UK but many dysfunctions that are thought to be cognitive are sensory processing issues.

One more thing to remember is that the government admitted that the diagnostics, treatment and care for people with acquired brain injury is realistically unfit for purpose. (Lack of funding for decades, lack of training and no cutting-edge research) A new strategy has been agreed abistrategy.org.uk/

But nothing other than forming a panel and proposing research to test anti-depressants to see if it will reduce depression in people with brain injuries has been done.

Hopefully your health authority are good if not you can get some help and advice from Headway, or another charity thebraincharity.org.uk/

who are more hands on and can give practical help sorting out awkward health authorities and government agencies. For up to date info on brain injury rehab go to YouTube.

Hope that helps.

[Pinklady48 in reply to pinkvision]

Thank you so much for this. It's the most info I have had from anyone. He has also just been diagnosed with macular degeneration buy also has Nystagmus from birth. I will bring this up at next appointment, it just seems to be getting worse and worse. He is now pretty much non verbal. It seems every two weeks something else goes, it's like a pattern. Again, thank you, you have really helped

[pinkvision in reply to Pinklady48]

Brain injuries accelerate neurodegeneration, but remember neurodegeneration is normal and starts when you are about 35 but there is plenty of spare capacity, when you are over 60 much of the spare capacity has been used up. You are born with all your neurons, you only lose them because they do not renew.

As with most people aging leads to neurodegeneration but any kind of brain injury which is neurodegenerative itself speeds up the process. I think the figures show that after a brain injury you are 2.5 times more likely to get early dementia.

I'm in my 60's and my brain injury reduced my brain capacity qualitatively and quantitatively, but as I know I am getting older this will accelerate. It makes sense to reduce the scope of life and avoid things that are taxing to sensory processing and cognition if there is no purpose to it, live a simple life. Don't drink, don't smoke, try not to worry to keep stress down, sleep as much as you want (lack of proper sleep is the biggest cause of neurodegeneration) and don't eat processed or crap food, try to laugh and see the good in the world (avoid the news).

[Pinklady48 in reply to pinkvision]

Thank you. Will see if we get anywhere with this. I feel there is no hope now and will just keep deteriorating while we are waiting on all these different things. I do wish he had been scanned at the time of the fall, the heart was the priority which I understand but I feel this has to be related

[pinkvision in reply to Pinklady48]

I just read your first post, seems like most of the standard tests were done, what are you expecting the health service to do? How old is your dad?

[Pinklady48 in reply to pinkvision]

He only had the scans in January but the head injury was in August. I'd have expected more follow up on the head once the heart was sorted. They knew he fell on concrete and the head lac was across his whole forehead split open. He is 61. We have been told MRI was normal in January and only showed normal age related deterioration. As I say, every 2 weeks another thing goes. He is now pretty much non verbal. They have said its another CT they want to do since MRI was clear

[pinkvision in reply to Pinklady48]

See what happens with the CT. Another thing here is that you should ask for some help yourself. You must be getting quite stressed and you are proactively trying to solve everything. Ask many people on here and their partners and family have a hard time too, it's a lot to get your head around so please look after yourself too.

[Pinklady48 in reply to pinkvision]

Thank you. I will try

[TreesMTBI in reply to Pinklady48]

Ditto to the taking care of yourself pinklady

Tx

[TreesMTBI]

I’m so glad pinkvision responded, he’s full of such useful stuff that’s helping lots of us out here ☺️ he’s a walking brain injury encyclopaedia 😁

Tx