Made's mom

[Made's Mom]

Hello... So glad I found this forum.
I just learned that my 12 year old daughter has a Type 1 Dural AV Fistula. She has Cerebral Palsy but this last year her mobility has gone from using a walker to now just being able to ride in a wheelchair. After a 3 hour MRI they found this new problem. We saw the neurologist today and she explained that this "THING" is very large. It starts at T1-2 to the T12-L1. I have just realized that this is going to take many stages to repair if its fixable at all?
Can anyone elaborate some idea how many procedures this could take?
What should I do before John's Hopkins follows up on the reports we are sending?
Should I just trust that they will have all the answers?
Can you give me any general advice?
I have no one else to discuss this with so I appreciate any non-professional help you can offer.
My next step will be the donation route.
Thanks
From Made's Mom

[Steve]

How many procedures it could take is impossible to guess. There are too many variable tangents to consider.

The only real advice that I can suggest is that you ask every question you have and don't stop until you're satisfied with the answers.

(I also moved your thread to a more appropriate forum.)