This is a hello.
Diagnosis 2004,craniotomy 2005.
Then tegretol for several years and yearly scans,and life continued in a way i recognized..although depression rose up.scans were to end in 2020,as there were no signs ofactivity.
However a mass measuring 1mm was seen.The follow up scan 12 months later,end of 2021,showed the bone invasion over half the skull plus a tumour mass.
6 weeks of radiotherapy, meant end of my driving,fatigue that was mind blowing increased depression and high anxiety,and end of my working life.Now I have one scan a year.No meds .Diagnosis of Encephalomalacia.Fatigue,brain fog,poor balance ,poor memory.
I can drive again ,but utterly hate the life I'm living ,and feel unseen in the NHS.out of sight out of mind.
I ve been told it will shorten my life,but as its atypical ,no one can offer insights on how that might be.
I d love to hear from anyone going through similar.
