So many of you may have read my daughter's story at her blog and well I'm at a point here now that I don't know what decision to make. A bit of short background: My daughter is now 4 and she has a deep hemangioma above her left eye. We went through propranolol, we did timolol, we quit timolol because we were told there was only fatty tissues left behind and was referred to a plastic surgeon. I didn't believe it was fatty tissues left behind I knew the hemangioma was still there (which would explain why it would swell and go back down on different days) So we went to a plastic surgeon at Childrens in Pitts. and had an ultrasound and it is indeed still the hemangioma that is there. So the plastic surgeon said it was up to us whether we do surgery to remove it or not. She said if it were any where else on her body that "we wouldn't be having this conversation" but because it is on the face there would be a scar. I want to know from anyone who has done a surgery on their child how they healed as far as scarring. I was told originally the incision site would only be about an inch. I just don't know which way to go. I'm worried that if we wait for it to go away on it's own (she has had it since 3 months old) that it may get larger like it originally did and she would end up having to have surgery anyway later on to remove fatty tissues or saggy skin. And maybe later on if the hemangioma IS gone and only fatty tissues/saggy skin remains then insurance would not cover it because it would be considered cosmetic. I would like to get it taken care of before she enters school. I'm just wanting to hear from anyone who has done surgery and what your outcome was. Thanks in advance! We go tomorrow for the 2nd appointment with plastic surgeon and I have no clue what decision we will make yet.
Deep hemangioma on left eyebrow towards nose
Started propanolol Feb. 11th, 2010
Off of propanolol aprox. June 2011
Takes 3 doses per day at 1.3ml
2nd Weaning of prop. not a success back on it March 22. Only one dose of 1.3ml now Baby girl is 19 months old
Did Timolol gel for awhile, stopped, & back on - 4 years old.