Hi Everyone, Thanks for all of your support especially shalon, We are back from childrens hospital in boston and unfortunately not very much more knowledgeable at all. Madison started experiencing swelling on her right cheeck in front of where her avm is (she has a red appearance like a port wine stain since birth) They can not tell us why the swelling occured only that it is a good sign that the swelling and pain seem to be subsiding. I asked about removal of her avm and they said she would not be a canidate for that because her avm is too involved. Tonight they had us meet the doctor on a emergancy visit just to look at her. He said he would review her previous mri with his team and that i need to come back in one month to the vascular clinic. Thats all for now. I am exhausted from this entire experience. Good night
I know, it is exhausting and overwhelming. I’m surprised sorta at the relative “lack” of info they gave you… I mean ANYONE could have told you it was a good sign that the swelling and pain was going away. You don’t have to be a fancy doctor to make that correlation!
What “kind” of doctor did you see? Plastics? Neuroradiologist? Well, it’s good to know they are going to review as a team. I hope they have some more news to tell you next month. At least something other than “we don’t know” and "no surgery for you!"
Not to be the bearer of bad news…but if it is too involved for surgery, then that means it is probably going to get worse (like mine did.) They need to offer you some kind of treatment plan…
I hope that Maddy continues to feel good and that the swelling and pain stay away!
I’m glad Shalon is surprised by the lack of info because I was too. How can they send you away to worry like that? Maddysmom, You are only starting out on this journey and now you have a month to do some of your own research and make up a list of questions to ask the next time. AND you CAN and SHOULD ask how much experience your doctor has with this specific condition.
When my son was first diagnosed, I was hesitant to ask questions but when they told us that WE had to pick his treatment, (and live with the outcome) I transformed into this MOTHER BEAR and boy, did I make lists of questions and demanded answers!! That is the best thing about mothers-you will fight for your child no matter what and you can do this!
One day at a time. You will go thru so many emotions but we are all here to help you. And I think Shalon is your best inspiration of all because she is SO brave and positive!