Hello and welcome to VBF! You came to a great place for information and support. I would also like to invite you to join the msn vb support group as well. http://groups.msn.com/vascularbirthm..._whatsnew.msnw
We have almost 1500 members and the support is amazing.
Glad you have appts. with ped. Ophthal. and ped. derm. I have questions listed on this site or on the vb support group (msn). Email me and I can attach the file if you prefer. They are basic questions that might help you start your own list. It is very helpful to have the questions written out for your appt. Express your concerns (very valid ones I might add) about her vision.
I would also encourage you to email Dr. Fay on the front page of this site "ask the expert". If you don't hear from him within a week, let me know and I can forward directly to him. He is an occularplastic surgeon with a lot of experience with eye lesions. It depends on the lesion if the doctors will recommend surgery and when. If it is causing vision problems they;ll want to do surgery asap. It is difficult to find experienced physicians...but if L.A. is closest for you... you would likely want to contact Dr. Reinisch. His contact info is new as he is not at L.A. Children's anymore.
State or Country California
Last Name Reinisch
First Name John F.
Title/Specializing In Surgeon
Hospital/Clinic Cedars Sinai Medical Center
Address 250 N Robertson Blvd. Suite 506
Address Beverly Hills, CA 90211
Work Phone 310-385-6090
Surgery can be done while it is still growing (that would be necessary if the lesion is growing rapidly and blocking vision/putting pressure on the eyeball. The risk is rebound growth if the entire h. is not removed. Rebound can be minimal though. Again, it just depends on the necessity for timing on the removal.
yes, insurance should pay for this and they have many times. I don't know for sure what type of insurance you have...but the VBF has a great resource for fighting for out of network care or appeals if you find yourself in a situation with your provider.
Feel free to email me anytime