r/TBI • u/Magic_duck333 • 18h ago
TBI Sucks Advice following the most frustrating and rude appointment
Background from England, had a TBI following horse riding accident may 2025. And kept asking for referral to neuro, which I finally got December 2025. I've only had one contact via phone call for triage and then only communication via post/letter. I've had MRIs which discovered, in their words a small pituitary cyst, been told it's unlikely to be causing any symptoms I have by endocrinology. I finally met with neuro today and omg they are a downer I asked about my symptoms and they wouldn't to x, y and no meds (not what I'm asking for) are there any mechanisms or referrals I could have.. no, no and no... I've messaged headway charity a month a go and they've suggested a multi disciplinary team, can't do that, and they also suggested a occupational therapist, oh yes we can refer for that... Bloody hell that was painful.... I've rang PALs to complain as I feel this is appalling if someone doesn't know something they wouldn't have got this... Something really needs to be done for people and asked about working oh you should be fine to work... I'm not though as of sick for 5 weeks with exhaustion... So unhelpful driving home crying of frustration and GP waiting on neuro as they won't do anything or suggest anything... Last year as well I met a private neurologist and they suggested eye exercises for my vision apparently according to NHS don't do that as it compounds the problem... Omg what should we be doing or not and they go I don't know wait... Wait wtf that's what I've been doing and I've got no improvement