[Bibliophile]

Hello there. :]

I'm sorry to hear about your condition and that you're finding it difficult to live with. It's perfectly understandable that you're finding it difficult to live with and you're welcome to talk about it whenever you want to!

I've never really heard too much about it! Is it Neurofibromatosis type 1 or Neurofibromatosis type 2? I can sympathise with doctors never listening, have you ever seen a counsellor or therapist or another person you would find it easy to talk to? Perhaps it would help to have somebody to talk to. People often don't understand the situation as they have never been in it themselves, it's difficult for them to imagine the difficulties that you're having and how best to help. The more you tell people the more likely they are to understand, I'm sure the more you tell your doctor and surgeon the more they will be able to help!

As for the surgery, I'm sorry to hear that they can't perform surgery. Are you aware of what is causing the chest pain and are there any ways to prevent it so you can have surgery in the near future? Also, is there reasoning behind nobody being willing to perform surgery? It might benefit you to not have surgery right now or it may do more damage than good.

Feel free to drop me a message if you ever need anything.
Rie.