So Lost

I dont know what to do or where to go from here, I have spoken with Suen and I will have to talk with my insurance about out of state insurance stuff... my docters here called last night and said that my AVM is not in my bone per the CT which is a good thing but they also said that there are 2 very big vessels and that one is sitting on my facial nerve. So now I have to go see another specialist for that, which is understandable you can ever have too many specialist I totally concur on that. Im just I dont even know what I am right now ..... :(


I hope things get better for you soon, K Leo. I don't think you need an additional specialist because of the facial nerve, though -- Suen should be able to handle that.

Hang in there! It is so confusing at first but things will iron out.

In order to get your insurance to approve "out of network" care, I recommend you have your current doctor/specialists be in agreement that that is the best care for you and recommend that you go out of network. Then insurance co can not come back to say "but your current doctor can treat you". If your current doctors say that they can treat your condition, it will be a battle for you. Your first approach would be to get your current doctors on your side of seeking other opinions and treatment for your complex avm with the other vascular centers, since the others are the most experienced. Ask you current doctors to write a letter to support the other opinions and possible treatment at another vascular center that sees complex avms on a regular basis.

Good luck! Take one step at a time and you will get where you need to be.