This is long and probably rambling. Sorry, it been alot. I took my DH into a&e three weeks ago, as he started saying random out of context things, kept falling asleep and had been generally unwell with aches and pains. He became more and more confused as we were waiting, and after a CT scan I was told by a very serious and visibly shaken Dr that it was bad news. They told me that he had swelling and what looked like a mass. We waited all night for an emergency MRI, which they said confirmed that he had a tumour. He was immediately given a heavy duty course of steroids. A week and a MDT meeting later, I found out that they were 99% sure that it was a butterfly glioma. He was unaware and confused for 5 days, but became finally lucid (with no memory of the previous week). I have an 8 year old DS so spent two weeks waiting for a follow up MRI in survival mode, between school runs and hospital visits with a very unwell DH.
We then got told that the follow up MRI in fact showed that the swelling had shrank so much that it couldn't possibly be a tumour. He has been discharged, but we have absolutely no idea what is going on. Obviously it feels like an actual miracle that it is not the butterfly glioma, but it is a something, we are told rare and unusual with a long list of possible diagnosis, which we will have to wait weeks to find out. He is home, but horrendously fatigued and vulnerable, mostly sleeping, and still taking the steroids. I'm exhausted, shell shocked and very very worried. Does anyone have any idea of what I should expect in terms of recovery from a brain swelling? We have been told they are looking into autoimmune encephalitis, amongst other things, does anyone have any experience of this?