Scans ?????🤔🤔

I've had 1 CT Scan of my head a few weeks ago in 37 years and I'm thinking maybe my tbi is too long ago to be picked up. I dont need no scans as I live with this everyday but moving forward what other scans are available to find out a more detailed diagnosis of what's wrong in my head..I'm new to this mine field so any guidance would be greatly appreciated as always 👍👍

[Leaf100]

Hi Stammers1,A lot of injuries do not show on CTs or MRIs.

I would talk to Headway and get their advice re best professional to see for a diagnosis. Be surto tell them your goal - a label is one thing, practical advice on getting therapy may lead somewhere else.

Therapies are often based on teting what you can and can not do, and the diagnosis doesn't have much to do with it. Maybe you require both.

Leaf x

[Hidden in reply to Leaf100]

Thanks for your comment trying to get the right diagnosis is a nightmare I'm waiting on a referral to see a psychiatrist to try unpick the madness in my head hes referring me to a nerve specialist to find out why I have footdrop. I'm in this for the long haul so it can take as long as it wants this ain't going away..thanks again👍👍

[Leaf100 in reply to Hidden]

Hi Stammers1, yeah there can be a lot of stuff going on in the brain box, for sure. Do you are awarrpe, I will mention there are psychiatrists and nueropsychiatrists, the neuro ones are trained in brain box stuff and regular psychiatrist stuff, so see one of those if you can. People with brain injuries tend to be sensitive to medications for example, and there is other stuff like that a regular one won't know. Sometimes the symptoms of the brain injury can be mistaken for something else - depression for example - and then you dont get the right treatment. Plus, it is a big relief to be able to tell someone some weird thing that happens and for fhem to say - yes, because you have a brain injury.

Yes, we keep on keeping on, and finding the right help takes some determination.

Leaf

[Hidden in reply to Leaf100]

I'll not stop until I get the right diagnosis from the right people my doctors prescribes me medication for Anxiety Disorder and Depressive Disorder but they dont change owt for me and I'm on the Max dosage too hes looking at changing my meds once im weaned of these the psychiatrist well help unpick my head the ct scan i had I'm not convinced so I shall be pushing for further investigations

Thanks Leaf100👍👍

[Leaf100 in reply to Hidden]

When I was first injured my gp told me had a concussion. The insurance company se t me to a doc and he did a report - I had to sign simeyhing saying I was ok with not ever getting a copy - though one was sent to my gp, who then wanted to put me on valium. That stuff is highly addictive, so I said no. I changed gp's and finally found out who to ask for a referal to in town, because some told me about the local brain injury society - we don't have Headway where I live.

I got some more information then and several labels were given in a report, some I did not agree with but someone said the report I wasn't allowed to see had to do with that and also the mechanics of how insurance works. At some point the lables included Post Concussive Disorder, MTBI. A few years ago the labels were changed to include the word 'functional' because I was told they are trying to move brain injury out of the mental health section of the diagnostic manual, sometimes called 'the blue book', and into a section unrelated to mental health, and with other disorders such as Parkinson's. Currently my reports say functional movement disorder, functional cognitive disorder.

I mention all this, so you can see you already have the MTBI label, which likely simthe only onethat doesn't change depending on who you see and the fashion of the day.

I will also say that my current specialist is just lovely, and tells me some of the symptoms have multiple causes, and even if they found out why they can't do much. Tremors, for example, have over 200 causes. He also uses labels on reports to the insurance company that they use, and he doesn't really prefer, because he knows how to speak insurance company lingo, which is a help to me.

Yes, your journey for a label hunt is worth it as you will get therapy along the way and greater understanding. Don't be surprised if they change and some seem right out to lunch to you, and don't be surprised if the pro's don't even agree on what they mean - for example someone on here said in the UK post concussive disorder is more associated with brain injury than mental health and at least some consider anything functional as more mental health - which it isn't, though there can be a something to do with it. My specialist sees it completely differently.

I use whatever label from the bouquet of labels I have, that seems like the one that will be understood in the circumstances. Out in the world I just say oh I have a little tremor can you pleasr help me fill out this form or you'll never be able to read it, ha ha. I very rarely mention the words 'brain injury' as people tend to not be able to get away fast enough and are then not helpful.

it's a process, the ground never seems stable, not in anything, except the Mbti label.

[Hidden in reply to Leaf100]

I'll not stop my hunt for right professionals now not a chance my accident in 1983 left me with life changing injuries I hid them so well that no one even knew but my time of hiding in the shadows is over. The label I have for my head problems is not repeatable on here2🤣I hope my posts are not coming across as selfish or owt I have so much to share regarding living unsupported with MTIB and I'm hoping my story can help others and their own journeys..👍👍

[Leaf100 in reply to Hidden]

Oh dear, I wasn't trying to suggest at all you ought to stop, just wanting to let you know it isn't necessarily clear cut and seems to be a moving target. Knowing that may help you be less frustrating, particularly if you run into an unhelpful medical professional, and they ard out there.

Leaf x

[Hidden in reply to Leaf100]

Dont worry your comments are awesome it's a mine field out there and I value every comment you post. They will be all over this like a rash with their clipboard and stethoscopes before long 🤣🤣👍👍👍

[Painting-girl]

Hello Stammers, Leaf is right, a mild traumatic brain injury ( concussion) rarely has visible damage that turns up on the scanners in general use. The hypersensitive scanners like FMRI that might do, are still only in research settings, and even so, I think I'm right in saying, that the bomb blast brain injury that military get for example, only shows up on autopsy not an option for any of us!)

So you are unlikely to get a scan which shows a brain injury - they do however rule out anything else going on. So don't be disheartened if any scans come back clear -a lot of people with memory issues and fatigue and organisation issues after a MTBI have clear CT and MRI scans.

The trouble is a MTBI is only mild in that it doesn't kill you, but it can have far reaching effects on our functioning. Bear in mind that you have already adapted very successfully to your original injury - and support in managing your symptoms might be limited so far down the line.

But you're right that recognition of what happened is very important. But as Leaf says, that diagnosis is based on symptoms. Leaf is also correct in that you need a neuropsychiatrist rather than a psychiatrist, to get that acknowledgement.

Neuropsychologists can coach you through strategies to help deal with the effects of a brain injury, and would also help you deal with your realisation of what happened to you.

So definitely talk all this through with the Headway helpline?

Glad you're seeing a nerve specialist and you are getting your meds reviewed - that's all very positive 👍

[RobHH]

Hi Stammers,Like you, I had a brain injury over 40 years ago (also a serious traffic accident with a blood clot on my brain), though I was a young adult, not a child. As there was no follow-up after the surgery, I just got on with life, until I hit a low point that lasted 15 years.

In those 15 years, I tried to find out what was causing my problems (mainly total exhaustion, but other things as well). In the end I was offered a CT scan, but decided after a while to decline it.

After all, if they found nothing, it wouldn't mean my brain wasn't affected by the injury, and if they found something, it would be an explanation, but what could they do about it? They seem to know so little about the brain anyway, and, as far as I know, there's no medication or surgery to repair it.

So I just decided to accept that I don't have the capabilities that many people do, but to try to get as much out of life as I can. That might not work for everyone, but it worked well for me, and, after those 15 very dark and depressing years I've had now had almost 15 really good years.

Everyone's situation is different, so I'm not saying you should do what I did, but thought it might help to see that life can get a lot better, despite everything.

[Hidden]

Thankyou so much for your comment it's always appreciated i can relate to most of what you said..I'm happy that my ct scan was clear theres nowt sinister going on no scan will show how people struggle everyday with BI. I had to accept my accident a long time ago and had to adapt my whole life to a different me I've still no memory of my accident or the intensive care and the 9 days in hospital after. The fatigue kicked in towards the end of my assessment. I'll not fix this but I will get the right support on board eventually moving forward..one step at a time 👍👍

[Symundo]

Hi StammersI’ll just brief you about me.

TBi Blood Clot Brain, Bleed Left ear, Brain swelling popping my right eye out, that went back in eventually wit photophobia.

Brain damage trouble short term memory, bad attention and all that comes with that as well. Attention span of a 7 year old and why doing this before I forget.

Had a CT MRI while I was in a coma.

You can get hospital records up to 6 years after. Prob longer now with all kept in computers

I have had another CT but not looked through it.

I’ve been told the brain repairs itself quite well where damage on the outside of brain cannot be seen no longer on scans, but the damage is still there.

You can get an EEG. It’s about £800 from teaching hospitals. This they ask questions and see how the brain reacts and what part of brain is used.

Problem is a referral may have to be done.

I called the university hospital direct and not totally sure if they were ready to book me in if I paid, or need a referral.

The one thing that puts me of that there is a risk of getting epilepsy due to have a brain injury. So I’ve not got round to getting it done.

I’ve had to go all that route as well because I had dodgy lawyers and corrupt insurers that said because I can speak about my injuries nothing is wrong. I can only mention my injuries because I’m in constant pain reminding me. They never changed the subject onto my life or anything and the reason for that it stops my brain working while I find the relevant information in my brain to talk about.

Good luck -Adddd link below for you explaining WTF it is.

[Hidden in reply to Symundo]

ABSOLUTELY WOW..thankyou so much for comment all I know about my accident is the recovery eye witness my friend back then tried to stop me running into the road but couldnt and WALLOP next thing i knew i were in a hospital bed with massive forehead a pot on my left tib and fib fractures with no clue how i got there and still dont i spoke with my friend for the 1st time after 37 years and she described it all me my body and head hit the car her words were you were like a rag doll being thrown in the air she still remembers it like it were yesterday. Its early days for me with tests n stuff as I've hidden my disabilities since my accident. I know that this has been with me since the age of 11. I'll not fix this and dont want to I just want the right diagnosis and support moving forward. I dont have 800 quid for a EEG..Hopefully I may be referred for 1 in the future..thankyou again 👍👍

[Symundo in reply to Hidden]

Hi again, I wouldn’t have replied but every so often I get an email, and if I relate to the questions asked I get in touch like with you.

If you read my profile you’ll see the rubbish I’ve had to go through.

With it been when you were 11. Have you been referred to a Neurologist ? They have helped me switch medication.

One thing you’ll have to know is medication can make can change your brain functioning in all sorts of directions.

Because my TBI is so complex. No one knows how to help, there baffled, and mostly with regards to brain injury there grab at straws knowing bugger all. But rarely you meet a gooden who tries to help and learn about your problems at the same time.

I diagnosed myself and by professionals.

Psychologists I feel that Circus Clowns have more professionalism (sorry Curtis clowns out there) NHS psychologists are good. I got some help with diagnosis with them.

I’ve done many tests online to define what’s wrong. Take an Autism Test, there free online. I know I don’t have autism, but it points out in some ways what’s wrong with me.

I was hit at 55mph plus on the pavement by a taxi cab with legs snapped under front bumper with my head and body pinned to the bonnet while the driver was blissfully unaware I was punching the Bonnet waving at him, where a passenger taps him on the shoulder and points to me. He starts to brake then stomps on the brakes. Sending me flying into the road.

I shattered my shoulder, elbow, hip, collar, both tibias, fibula and both knees and fractured skull etc.

He had bottle end glasses on the dashboard, where I thought if he wears them, he’ll never see me.

If you can tell me what you know what’s wrong I can help because been through all this for years.

I’ve found I have brain injuries that only appear when I’m doing something else. Like a weird domino effect that sends me bed bound for days.

What you’ve said so far, if I was you.

Ask you GP for referral to a Psychiatrist, or preferably a Psychologist who if you have a vague idea what’s up, he can test you to know exactly what’s up.

Or try GP for an EEG to pin point your TBI. ( I’ve tried. It took me 10 years of asking just to see a neurologist).

The best help you can get is when you know exactly what’s wrong with your brain. Then you don’t have to listen to the drivel some come out with. And that will help the Docs Test you exactly to confirm that your a sandwich short of a picnic like me.

My heads exploding now. Oops there it goes 🤯

See ya. Best luck figuring it out.

[Hidden in reply to Symundo]

Thankyou for your comment I'm just starting out on all this so I'm taking my time. My pic is of my head I had 3 tbis in the space ov 9 years all on the left side of my forehead I have a small dent in my head which wernt there before I had my tbis. I only remember the treatments for my tib and fib fractures but nothing for my head no scans or owt but this was back in the 1980s things wernt as advanced as they are today especially TBI I'm hoping in time I will get to see the right people regarding my head..thanks again 👍

Colour photo at home

[Symundo in reply to Hidden]

Best of luck. I hope you get all the help you need.

[Symundo]

EEG SCAN

manchestermedical.org.uk/co...