Thank you.  Emily also has NF.  She doesn't really show any signs of that.  That is why they thought she had the lesions as a baby.  I could NOT get them to do another MRI until this past year.  She was having learning problems (which can be from NF) and I wanted her brain checked.  You just keep plugging along.  So finally all of this happened.  I am grateful that it happened before anything bad though.  My stomach is a mess waiting to hear anything. 

Hi Denise, I can related with the fustration of neurologist, my doctor is great but his nurse is a pain in the .....I thinking about changing doctor.  Your doctor doesn't want to help, you go find another one, and also talk with your primary care doctor, they may have some suggestion.  I believe that by law doctor office have to release your record when you request, so if I was you I would call or come to their office tell them you want to have your record included MRI, CT...., then make a copy keep it for yourself then make appt. right the way with another neurologist who have knownledge with MM, start it over, (you may read the record before you want other doctor have it,)   you have to get your appt with NEW neurologist ASAP, follow your post you didn't have surgery yet, so you are walking with a timing bomb in your head, it will strike on you and you don't know when.  I don't mean to scare you but all you waiting is major stroke to come. 
Just my 
Kieu

Hello!  I just booked our flights to Stanford!!  Emily's first surgery is on June 3rd and the second one is on June 10th.  I will let you know what's going on!!

Thanks,  Jill is the first person I spoke to when I called them.  She was very nice and listened to my hysterics!