Seeking information about encephalomalacia

[Jasper65]

Hi , I’m new to this site . I have recently given up working to become a carer for my partner who had a TBI in 2009 . He received a bleed to the brain and had to have a craniotomy . Amazingly he recovered and even went back to work but in 2018 I noticed a change in his walking and a movement in his eye . We were waiting for an appointment with a neuro-opthamologist when covid struck -and so the nightmare began . After many trips to various hospitals and my partners condition worsening -he has finally been told he has encephalomalacia and that there is nothing that can be done but we are left in limbo not knowing what to expect -is there anybody out there that is going through a similar experience? I would be grateful just talking to someone who has any idea of this condition.

Many thanks Sue

[cat3]

Sorry, Jasper, to hear of your partner's plight. I gather this is fairly rare in adults and haven't seen it mentioned here until now.

If you haven't already, please speak with the Headway team via the helpline on 0808 800 2244 (office hours) for professional advice and support.

Sincere best wishes for finding the help you both need... Cat x