Can anyone advise about dd please? Possible brain injury from concussion a few years ago.

[WholegrainCustard]

Dd is 18. 3-4 years ago she had a moderate concussion followed 2 weeks later by a whiplash injury, which exacerbated the concussion. No x-ray, it took months for her to feel normal again.

Since then she always has pain at the back of her head/neck where the original injury was. Sometimes it’s bearable, other times less so. She also has spasms radiating from this spot.

Since this she has had problems with her vision, she struggles to focus and her sight is often blurry. In the last three years she has had several pairs of glasses with varying prescriptions, none of which have helped.

She has also had some major mental health issues since then - we have a family history of autism, and dd has always had anxiety, but since the concussion she also has OCD, depression and an eating disorder. This might not be relevant though.

She’s seen an osteopath for months, had two lots of physio, nothing eases it.
She’s done the usual heat/ice/painkillers, nothing helps.

Her latest eye test was two weeks ago, and for some reason the optician wrote to her gp (maybe because she’s had 6-7 appointments in the last 3 years) who rang dd to say that she suspects there’s a link between the concussion and the vision and pain. She referred dd for an X-ray and said that if that came back clear she’d carry on investigating, possibly MRI to check the blood flow at the back of DD’s head.

Dd had the X-ray last week and has just had a follow up appointment today. The gp checked her strength in both sides (I assume checking for one-sides weakness), which was fine, noted that her left eye reflex was lagging, then mainly focused on DD’s eating disorder and said that that was causing the neck pain (neck pain and vision predates the ED by 2-3 years), has ordered bloods to check her levels and suggested yoga as it is muscular. DD’s neck barely came into it.

Dd spoke to another gp later as she was upset with the lack of outcome. This dr has referred her for more physio, commented that the GP today had covered a lot and that dd is a difficult patient.

The dr who brought up the MRI is currently on holiday, but I will follow this up with her when she’s back.

I’m pissed off because dd has been in constant pain for years now, and has been repeatedly fobbed off.
I have no idea if the dr was calling her a difficult patient in a descriptive way or a critical way.
If this was your child what else would you be doing?
Thank you.

My friend has just had exactly the same thing. Constant neck pain, blurred vision etc. It was two years since an accident where they diagnosed whiplash which she’s been getting physio for. The physio just added to the pain.
She had to see a neurologist and she had a problem with cerebral tonsils. She’s had a major operation and is currently recovering.

I’d get a neurology referral and an MRI focussing on the head and neck area. If it’s the same thing it just gets worse if untreated.

That’s completely unacceptable from the physio. Did the physio say that to your DD?

Sorry, that was a GP who said that.

She’s had months of physio, it’s done nothing to improve it.

She keeps being told it’s muscular, but none of the remedies (physio, ice, painkillers) do anything at all.

@magicstar1 thank you for that, I’ll write it all down to ask the dr when she’s back in the surgery.

The difficult is one of those awful transference terms that permeates medicine.

It's rarely deliberate or used in direct criticism of a patient, but I sometimes slip into using it myself because most medical colleagues understand what you're getting at which is usually something on a spectrum of this is 'complex/really complex/unexplained/unexplaianble/something I'm struggling to work out'

I try to use 'complex' or 'puzzling' in preference if I can

@FixTheBone I wondered that.

I hope difficult meant in diagnostic terms 🙄

Your poor DD. Definitely push for further investigation.

When is the MRI GP back? O know it's hard of your surgery is like ours but you need to push for every contact to go to or from her

If the pain flares up to intense the option would be to take her to a&e but not sure what the rules on for her having you with her

I'm not medical, so apologies if this is irritatingly unhelpful, but the mention of osteopath made me wonder if you've tried a chiropractor. I had horrendous, debilitating back pain and saw an osteopath who did precisely nothing and charged a lot of money for it. I assumed chiropractors were the same thing, but they have far more rigorous medical training and are real experts in the spine and all things related. I guess like anything, individual practitioners vary but mine completely changed my life, when I felt pretty hopeless and thought I was looking at a slow, inevitable degeneration. Might be worth a try while you're waiting for a more mainstream treatment pathway.

Much sympathy to you and your dd and hoping you find answers and some relief from this soon.

MRI gp is back in 10 days I think.
I will ring and ask for an appointment with her and see if I can go with dd.

She hasn’t seen a chiropractor, but if there’s a chance there’s a blood flow problem I think I’d rather rule that out before considering anything else.

Thank you for suggesting it though, and I’ll definitely go down that route if everything else looks ok.

Please don’t go to a chiropractor until you get the MRI. I might sound OTT, but my friend was told that she was lucky she hadn’t done that as it could have been a fatal mistake.

I agree she really needs an MRI . Can you afford to go private ?

@SirVixofVixHall no.
Although if it was desperate I could probably ask a family member.

I paid private for an MRI of my hip for a running injured. It was £250. So a lot less than I imagined. Just in case you thought as did I, it would be thousands

@magicstar1 her father had a carotid artery dissection a few years ago so there were treatments that the osteopath refused to do in case it was an inherited condition, so unless she’s been ruled fine by an MRI I would avoid that.

@Chesneyhawkes1 thank you, I was imagining far more than that!

Absolutely needs an MRI. Look up tethered chord and Arnold chiari malformation.

Was about to mention, Googling tethered chord, chiari malformation, plus craniocervical instability loopyapp .

Best of luck Op.
None of these may apply, but hunting down appropriate diagnoses & medical care can be a long tick box exercise & might get you closer to what the issue actually is.

How did she get the concussion and subsequent whiplash?

Playing rugby. She got hit at the back of her head.
The whiplash injury was flinging her head to avoid something that someone at school threw at her.

We’ve done some googling, and have seen that there’s something called occipital neuralgia which exactly describes her symptoms.

(Plus apologies for accidentally starting 2 posts about this!)

Thanks. Was just wondering if there was an insurance option.

How is your daughter getting on? I hit my head falling backwards and heard a crack. I have a swollen lump just under base of skull and top left of neck. I have had pain for three months. Am now worried about artery dissection. Waiting for radiologists to go over my gp referral before I can book ct scan which I'm paying for.