post concussion syndrome : does anybody suffer with... - Headway


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post concussion syndrome

smurf2 profile image

does anybody suffer with post concussion syndrome after a "minor" bang on the head no bleed etc please ?

16 Replies

Yeah I did maybe still a bit - I had a knock to the head about 4 years ago and I had to take time off work for about three months. They said it was a minor concussion but I just wasn’t getting better. I went back to work part time and it took me another six months to get to full time. Although I struggled with full time for a couple of years after that. I couldn’t fly, I couldn’t exercise, my energy levels were all over the place. I saw, still seeing osteopaths, acupuncturists naturopath. Because if it’s not serious enough doctors don’t want to have anything to do with you. Yet it is seriously debilitating and has made a huge impact on my quality of life. Although I am a lot better than what I was still it has been 4 years and I’m still not back where my energy was before my concussion.

droopybrain123 profile image
droopybrain123 in reply to asbas

Hi Asbas. Were you aware that a bang to the head can cause whiplash injury. If severe enough even torn or badly stretched ligaments. This is when your PCS is not just concussion but whiplash injury. And yes severe whiplash injury can cause brain injury. Main symptoms: severe headaches, balance problems, vision problems, concentration problems plus other symptoms. If you have these symptoms then I suggest you do your homework on cranio-cervical instability.

droopybrain123 profile image
droopybrain123 in reply to asbas

Sorry as as I should have included fatigue and weakness also

asbas profile image
asbas in reply to droopybrain123

Gosh no I hadn’t realised that neither had any medical professional pointed that out. I’ll read up on it - thanks so much

droopybrain123 profile image
droopybrain123 in reply to asbas

The Doctors haven’t a clue I’m afraid. I lost my job and then my home. I researched for three years as all my NHS scans were reported as normal. The turning point came when I went for a dynamic upright MRI scan and they reported my torn left alar ligament plus brain herniation plus other abnormalities at the cranio-cervical junction. The NHS do not measure important angles at the cranio-cervical junction that indicate cranio-cervical instability. Nor do they accept that a brain herniation less than 5mm is significant. If you continue with your symptoms then this would be an option to pursue. Medserena in London is the best upright MRI clinic as they supply you with a full written report plus a disc with all the images on. The only problem is that it’s private and the scans are quite expensive, but they still are the best for finding abnormalities. There are other upright scanning places some available for referral on the NHS, but the Doctors who look at the images need to be thoroughly trained what to look for and some, I’m afraid, are not and therefore you may not get a proper diagnosis.

Your post has given me hope. I had a concussion on a train 18 months ago, still not recovered, suffering with PCS symptoms. The MRI scans showed nothing and as I was not unconscious after the accident all the experts say the concussion is not the cause of my issues.I have given up trying to explain that I am not the same person following the accident, I am told by GP and consultants to forget the accident and move on. Maybe my solicitor would make an appointment at Medserena for me to finally get some answers, can you give me an idea of the costs involved?

Hi Halinbath, I paid £1200 for upright MRI scans of the CCJ and also the neck, as whiplash injury can cause injury at the top as well as lower down the neck. The NHS consider whiplash injury lower down the neck but they don’t associate it with injury at the top. The MRI will involve you flexing and extending your neck and turning your head to left and right. The best Doctor for reporting on your scan at Medserena is the Clinical Director, Professor Francis Smith. Doctor Steven Morgan reported on mine but he missed diagnosing CCI and a subluxed right atlanto-axial facet joint. Professor Smith re-evaluated the report three years later and he diagnosed these additional abnormalities. The important thing is you will get a disc with all your images on. I’m telling you this because if you have a torn or badly stretched ligament/s then this leaves you with a chronic condition. The ligament/s can deteriorate further which would leave you even more poorly. This is when you need to upload a copy of your disc to one of two Neurosurgeons that have in depth knowledge and experience of CCI and have performed many fusion operations to stabilise the head and neck. The Neurosurgeons in this country deny this condition exists. You would be lucky to get an NHS Neurosurgeon that will take on board the private report and upright MRI images. On top of this my Medico-legal Neurologist completely ignored my upright MRI report, admitted he couldn’t open the disc with the images on, lied about my medical history and said I had no physical injury. Thus my injury claim was greatly downgraded. The strength test he performed on me was pathetic! Hope he never crosses my path again as I don’t think I could restrain myself. The two experienced Neurosurgeons are Dr Gilete who is based at Hospital Teknon in Barcelona and Dr Fraser Henderson in Chevy Chase, Maryland, US. Cranio-cervical fusion is not recommended unless you become very poorly. The cost of this operation is very high, like Gilete is £80,000 and Henderson £150,000. So you can see why it’s important to get a good Solicitor who will support your claim. Most people I know are having to self fund. I would now also have to do this if I deteriorate. Hope this info is of help to you.

Hi Halinbath, Maybe you can try a stronger approach with stupid idiots who tell you to forget the accident and move on. Just tell them that if your condition deteriorates you will obtain proof of your severe injury and personally sue them for Medical Negligence. This is the most sinister injury ever. My brainstem is stretched and bent over, and the brain herniation speaks for itself. It can lead to disautonomia, paralysis and eventually death for both trauma induced and EDS sufferers. I’m on a Facebook group called ‘EDS - Cranio- Cervical Syndrome and related disorders’. There’s many people in a bad way, some even critical and the NHS are doing sod all about it. They continue to deny this condition exists, they do not perform any CCI fusion operations in this country and neither will they help fund the costs of this operation abroad.

Wow, thank you so much for your response. I am at a very low point, feel like I am being ignored. My NHS clinical neuro-psychologist was understanding but insisted that as there was no loss of consciousness I must just move on and not dwell on the accident. This made me so so angry but I tried to accept what he was saying. I am sleeping so much it is scary, I feel like I will not wake up sometimes when I fall asleep. Not sure where to go to go from here, should I talk to my solicitor who seems to do nothing even though recommended by Headway or just pay myself on credit card for the upright MRI ?

Hi Halinbath, I know exactly how you feel, I also felt very low, ignored by all the medical profession. I was very ill, very fatigued and irritable, couldn’t cope with any stress, and their ignorance and disbelief in me was making me more angry. I was getting quite a list of people I would one day prove to be wrong.

My solicitor said I wouldn’t be working if I was ill. Hell, what can you do when you live alone and have to support yourself, what other bloody option is there? Especially when your GP refuses to send you for any diagnostic services and tells you it’s all psychosomatic. I had to struggle on but lost my job in the end. Just try stay strong. You need to rest and sleep but be careful, many times I wake up and I know I’ve not been breathing. I really need to have this checked out. This injury causes sleep apnoea.

As for your solicitor, nowadays they tend to sit back and offer very little support. I paid for my upright MRI scans and got proof of injury. But there’s an evil undercurrent of

professionals including Solicitors, Neurosurgeons, Neurologists, Medico-legals, that are denying this proof of severe injury. I wish you good luck with your claim Halinbath.

You wouldn’t be unconscious with ligament injury. The ligament tear is the more serious injury here, not the head. The torn ligament gives you severe headaches which far outweigh any neckache. But this confuses all the Doctors 🤪 as they still relate headaches to the head injury and expect a whiplash to cause neck pain not headache.

droopybrain123 profile image
droopybrain123 in reply to asbas

Hi Asbas, just also to make you aware that you will find a lot of websites for cranio-cervical instability that refer to EDS sufferers. They have a congenital condition in which they have ligament laxity which means they can also end up with the same condition. There is little information regarding trauma causing this condition but just to reassure you there are a lot of people have posted on various forums that whiplash trauma has caused it.

droopybrain123 profile image
droopybrain123 in reply to asbas

Asbas. If you go down this route of an upright MRI and they find abnormalities please contact me if you can. I can give you lots more information.

Hi goldie11. Have you researched into cranio-cervical instability caused by severe whiplash injury?

Yes, I have it. I had a concussion but no loss of consciousness or memory. I’ve set up a Facebook group called “UK Post Concussion Syndrome Support” as I was frustrated with the lack of support available.

droopybrain123 profile image
droopybrain123 in reply to Lizum

Hi Lizum, yes banging your head can lead to severe whiplash injury. In the case of prolonged symptoms of concussion (including severe headaches, balance problems, vision problems, concentration, memory, organisation, processing problems, fatigue, sinus problems) yet NHS brain scans are unremarkable, then you need to be looking at the possibility of torn ligaments. These being the main structural ligaments that secure the cranium to the cervical spine. This injury is so severe that most people will be unable to continue working.

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