Hi there,On the 19th December I slipped on black ice and banged the back of my head. I couldn't lift my head up and for what felt like 5 minutes lost my sight. A passing stranger stopped his car to assist me holding my head for 50mins waiting on an ambulance. 8 hours strapped to a hospital trolley before getting a ct scan, 15 hours before getting a bed added to the fear.
Diagnosed with TBI I was sent home with a walking stick, anti sickness pills to help with the vertigo, told to take paracetamol for headaches and instruction if I was concerned or things got worse to go back to the hospital.
4 months on the vertigo has calmed down to mostly when I lie down. The headaches don't happen as often but I struggle to walk any distance. I feel myself shaking and I'm exhausted for days after.
There has been no follow up from doctor/hospital apart from the suggestion to get in touch with Headway. Is it normal to expect a checkup or a repeat CT scan to see that everything is heading in the right direction?
Does anyone feel the same as me? Left to just get on with it?
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Ynnarg
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Hi, sadly from this forum, there does seem to be a general lack of understanding around head injuries and patchy aftercare to what the medical profession regard as mild injuries. What appears to be mild can have long term consequences that people find quite debilitating.Headway is a good starting point either through their website headway.org.uk or via their telephone helpline during office hours 08088002244, they have advice and resources that can help. Professional advisors can help signpost you to support.
This forum is full of people with lived experience that will respond to any questions you may have.
As Ian (Pairofboots) has said, brain injury care is patchy and unreliable unless you happen to live close to a specialist hospital.
It's usual for patients to be discharged into the care of their GP. But I was only discharged after a 3 month trial period at home then a review with my neurosurgeon.
Were you given a diagnosis ; concussion maybe ? And now perhaps struggling with post concussion syndrome ? . . . . .
If your GP is as clueless on brain injury (as many seem to be) they can refer you for further neurological investigation to, hopefully, address/manage your after-effects from the injury. There's a big issue with NHS waiting lists of course, but it could offer some hope for eventual answers.
The first thing I would recommend doing is getting a diary and write a record of all the dates/events/symptoms for what you experience/have experienced up till now. Go back to your GP and get a referral to a Neurologist so that you can get a better understanding of your injury and what to expect with regards to recovery. Your GP may refer you for a MRI scan first which I would highly recommend as you can then pass it on to your Neurologist at your first appointment. Keep in mind that not all doctors will necessarily pick-up on signs of damage, and nor will an MRI scan necessarily show the damage.
Have a search for 'Post-concussion Syndrome' on here.
Going forward, you probably would want to get a better understanding of how this will impact your life. If you largely recover and are able to provide through full-time income, then that's a great outcome. But if you, like many of us, really struggle in various ways due to injury then you'll probably need to have the documentation and evidence to make a claim for government support.
I’m sorry you’ve been left to your own devices to work through this. It sounds like a traumatic experience. I agree with everyone’s advice.. You will have to do research and advocate for yourself. I’m six years in from banging my head.
My GP thought I’d had a stroke initially, then post concussion syndrome. After doing research, I got a private neurology appointment and private MRI. They diagnosed FND.
I pressed for rehabilitation for FND (functional neurological disorder) and it helped a lot. They identified complex PTSD and I still see the Mental Health team.
I took medical retirement as I’m no longer able to function at the level needed to work and work insisted!
Sorry for the detailed reply, It is to illustrate how a head injury can evolve; I thought I’d banged my head, I’d stick some frozen peas on it and crack on back to work!
Good luck with a diagnosis and continued recovery.
I’m sorry to hear about your situation. I’m afraid routine aftercare and follow up is patchy and is something you have to press for.
Do phone Headway and then get in touch with your GP and ask to be referred for a scan and then neurologist .
Do you have anyone who can help you with this? Sometimes, not always, GP’s respond better if a concerned relative or friend can voice their concerns as well.
Headway will also have helpful information about managing your symptoms.
I would echo what has already been said here. It’s often the case that we are given a leaflet that says most people recover in a few months and that is it!
Post concussion syndrome is defined as the persistent symptoms that go beyond 3 months. It’s a lot more common than the average person or doctor thinks!
The recovery is varied but it’s possible that many do not make a full recovery. But do not be discouraged as life can be different but still of good quality.
To start the process of understanding you need to get as much info as possible and try to engage with your GP sooner rather than later.
Hi and welcome to this group .. I think from what I have read that all the information you has been said to you already .. this is the best place to get advice .. this group has been my saviour at the most difficult times .. good luck Sue 😊..
Again I’ll echo all the responses so far. Your story sounds very familiar to me. Headway is the best place to start your research, and if you speak to one of their people who are very kind and compassionate, they will help guide you with what to do next regarding your GP, getting a neurological referral, scans, diagnosis, etc.
I’m no doctor but sounds like post concussive syndrome and also as your experience sounds very scary, perhaps PTSD too. I’m nearly 8 years out from my accident, I was knocked unconscious and had brief amnesia which terrified me in the moment which triggered PTSD- which I had alongside the brain injury. But I didn’t know this until 2 years ago. I also didn’t have NHS input for more than 5 years, only an initial basic check-up abroad when it happened, no scans or anything.
Anyway, you’re in the right place and there is hope to get help and start to feel better.
Keep on posting and coming here for support.
Lots of healthy wishes sent your way. And please be kind and gentle to yourself, your brain needs that right now.
I am 7 mths in, broadly similar experience. I was lucky in that the hospital sent me a specialist physio who moved me around and sorted the vertigo straight away. It might be worth asking the GP for a referral for this, just in case it would still help you.
Like you I had shocking - to me - PTSD type reactions early on, in which I could barely walk. And dizziness so that I needed a strick for months. I was knocked headlong down 13 steps, banging my forehead in different places 3 times, so my damage will be a bit different from yours. But I have also had bad exercise intolerance, and it is slow to improve.
I assume yr mri didn't show any bleed or anything untoward? I doubt personally they will give another if that is so. The damage is there, but can't be picked up on mri.
Yes, no outreach from the system to you is normal. The medical assumption is that the vast majority improve in time. I wasn't even told about Headway. The system waits for you to bother it. Bother it along the lines others have suggested here.
I am 7 mths in and v lucky, if that is helpful to you to hear, in that there has been a steady improvement. Not that it felt like that at first. The slowness of the improvement was a shock, and the lack of information and understanding. It is worth keeping a diary even of it is just 3 circles to fill in with sad or smiley faces and 2 sentences so u can track patterns and improvements.
Hi Ynnarg, I suffered a TBI about 5 yrs ago . Hit the right front side of my head and lost my speech for about 5 minutes, sorry to say the treatment here in the USA is the about the same , CT scan was kept in hospital for 3 days , then was told go home and rest and eat a high fat diet! My symptoms were could barely walk , dizziness, off balance when standing , fatigue, severe anxiety, depression, mood swings, couldn't sleep went back to hospital and was told it was my brain healing itself. And it would take time ! Not good enough so I started researching and found Dr. Michael Lewis book called When Brains Collide he has a protocol using Omega-3 fish oil and CBD to heal your brain I read the book then did the protocol within 3 weeks started to feel better and within about 2 months most of my symptoms were gone , im still on the maintenance code of fish oil and CBD and I'm pretty much normal except short term memory, I forget things . Please research this book it could help you very much. Good luck!
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