For some reason it won't let me post on my original thread, but for anybody still following I thought I would update!
Dd had surgery this afternoon and is recovering well! Fingers crossed this is now the end of the horrible journey we've had over the last 9 months!
https://www.mumsnet.com/talk/amiibeingunreasonable/4568743-ae-or-wait-to-see-the-gp?page=24&reply=120868303