Neurologist consult - I'm scared!

[trishy63]

I have a telephone consult tomorrow with a neurologist. Not my neurologist (as NHS have not deemed me worthy to have one!) but the one that the insurance company instructed (SAH etc car crash). I've had an MRI, and Neurologist has been asked to look at just one of the symptoms I have reported. He has told me he has seen the scans, no major scarring, but likely microscopic Diffuse Axonal Injury. He is phoning me once he has reviewed the radiologist report of the MRI. I kind of feel I cant ask anything else, and I'm not sure if all my symptoms are Neuro or other. I've had PTSD and think they put a lot of stuff down to 'stress', head to toe pain, (I need to exercise!), fatique (doesn't last forever in Brain Injury??) etc etc. I've left it a bit late to ask .... just another of those symptoms .... planning and sequencing not so good. I don't know if some questions should be to Neurologist or other. Can I ask him which parts of the brain relate to symtoms, or is that a neuropsychs job? Beginning to get worked up about this now...Any experience Health Unlocked friends out there? Trish x

[Dory2016]

Hi, the insurance neurologist assessment is different to a normal (clinical/treating) appointment. He/she is not there to primarily treat you or answer your questions. Rather their aim is to verify "causation', ie are you symptoms directly due to the incident you had, do they agree with the diagnosis, if not do you need to be referred to another specialist , if they agree diagnosis they need to give an estimate of recovery (prognosis). In the background they will review All your medical records and write a report for the court via the insurance' lawyers.

The best thing you can do to be prepared:- is make a note of all your symptoms since the accident, any known triggers, how intense scale 1-10, what you do to help reduce this, any medication or supplements you take etc.

If possible always take someone with you for support plus they can verify what you was like before/after your incident.

Try not to worry,

D

[trishy63 in reply to Dory2016]

thank you dori. Insuers have not asked him to carry out a full assesment, just to find a cause specifically for continence. He says no scarring and guesses microscopic axonal injury. Sounds like they wanted a big obvious injury to a specific area

[cat3]

Sorry Trishy I've no experience of insurance people, but I would seriously challenge any suggestion that fatigue from brain injury is only temporary. The immediate damage may heal and the brain will strive to adapt and compensate for the damaged area, but the damage itself, and the effects of that damage, are with us forever.

You're an intelligent lady so stand your ground and be 'calmly forceful' about your symptoms and how badly they impact on your everyday life. Try not to worry too much in advance ; if the outcome is disappointing (which it may well be owing to assessors being trained to reject a percentage of claims) you'd almost certainly win on appeal.

Just be yourself and tell the truth of how your BI affects you on your worst days .

Be thinking of you .................good luck ! xx

[Julesgettingthere]

Hello Trish

Just seen your post - are you still awake ?

Jules

x

[trishy63 in reply to Julesgettingthere]

hey Jules, yes the seagulls have made it so, lol 😍 x

[Hidden]

It is stressful for anyone with a brain injury having to answer questions over the phone as a fairer assessment would be face to face. A common outcome of brain injury is thought blocking which happens to me when feeling pressured ie not able to think of suitable answers when put on the spot. Try not to beat yourself up over it because if you are not able to answer their questions immediately then therein is the evidence that your brain has not 'healed' and never will return to how it was prior the accident as Cat said. The insurance people do know that too, of course. Their priority is $$ not people's welfare. They do not care about your emotional state.

Speaking from experience, during the final stage of my life insurance claim process (which dragged on for over a year) I was required to undergo a neuropsych assessment arranged by the insurance company. It was a formal assessment in the city and it was exhausting. The neurologist woman was kind and could see the functional impact of my brain haemorrhage. Hence, body language is the best form of assessment. I had prepared myself for it by reminding myself that it was just a formality to confirm that I am not 100 % anymore. My fatigue level soon became evident and I said 'pass' or 'I don't know' to questions I could not answer or recall. This is one type of medical assessment that is ok to fail because the expectations are unrealistic. The phone assessmentseems to be a quite cruel method.

In essence, there is no preparation for it. Hope you manage to get a good rest before and afterwards.

take care. xx

[Hidden in reply to Hidden]

sorry, correction.....the woman was a neuropsychologist not neurologist.

[trishy63 in reply to Hidden]

thought blocking? Not heard that term before, but your description of it explains one of my symptoms 100%. I am sure they just referred to it as me being 'slow". Its not tho, as I come out with emotional ill thought out responses. Next day realise I missed out ALL of the actual relevant detail!! Thank goodness for cyber support, others just don't 'get it' even the professionals! How did u first learn of that term for your symptoms clara61? If you don't mind me asking, ,😍 x

[Hidden in reply to trishy63]

No one loses their prior intelligence from a brain injury. It is the general population that perceives brain injury survivors to be 'slow' which is a slur on our intelligence. Call it stigma. Thought blocking is a term that I had prior knowledge of because in my previous life I was a health professional with an interest in neuro and psych. My prior knowledge has been helpful in understanding what happened to my cognitive function. To answer your question, thought blocking occurs with word finding difficulties which I experience when fatigued or stressed. It is the language centre (Broca's area) of the brain that has been damaged...

Word of advice, don't be hesitant in calmly asking the phone neurologist to speak clearly and in plain English not medical terms. Sounds like the phone call is to convey the radiologist interpretation of the scan so there is nothing to worry about because they have the answers in front of them. Only you know how it feels to be living with a brain injury and that cannot be quantified. Good luck with it all. xx

[trishy63 in reply to Hidden]

Thank you so much for this. Slow 'processing speed" has been written by neuropsychs and psychologists in reports on me. I've interpreted that as them saying I am slow, same thing I think. But .. your explanation here so much better, I will try not to do battle on it, hmmm may be easier said than done! Also, the advice about plain English terms, thank you for reminding me to do that, and also for my good luck, I will grab hold of that. Trish xx

[NightBird in reply to Hidden]

Clara61, could you please expand? The loss of intelligence has been a mystery to me. I absolutely know I am less intelligent than before. I can't follow simple tasks without a barrage of prompts, let alone the high-level political discussions I used to love. My memory is also shot to hell, and while I know that's not identical to intelligence, it is the well intelligence draws from. I've been trying to read articles about the brain, but nothing sinks in any more.

I am writing a book on my experiences, so any insight is valuable. Many thanks,

Lia

[trishy63 in reply to NightBird]

so much New Stuff to learn, and not best placed to take it on board, T x

[Hidden in reply to NightBird]

Hi Nightbird, I get what you are saying.... it does seem that we 'lose' our intelligence following a brain injury. However, it is still there. Just difficult to tap into since the neural connections are damaged. We do not lose our intelligence at all. However, the ability to take on new info, which inturn expands our intelligence is not possible. Short term memory impairment impedes the ability to store new info into your long term memory. Brain injury is so complex as we know and new research is uncovering many more facts. A few well known people that sustained brain injury and returned to a productive life following rehab include the author Roald Dahl, actor Sharon Stone, comedians Rick Mayalll (rip) and Gordon Kaye. Hope this answers your question... Claire xx

[trishy63 in reply to Hidden]

thank you for sharing. I have met this neurologist. There was a mix up with the mri report, it didn't arrive in time for the face to face consultation,that I had an overnight stay to attend. He couldn't discuss the scans he said without the radiologists report. Reading scans not his field he said! Not great, but phone consult will need to do. Just a bit weird, hope I can keep up.,😒

[Hidden]

Make note of what you want to know and what the neurologist says

Try to relax. Stay calm and try to think before you answer any questions

In the word's of Dads Army STAY CALM

GOOD LUCK