Today was our appointment in NYC for the surgical consult with Dr. Waner about Andra's hemangioma. We got there right on time...and then waited nearly 2 1/2 hours. It was a tiny waiting room with lots of people all waiting for one doctor. I expected to see more kids with hemangiomas, but this doctor treats all kinds of vascular birthmarks and tumors. Only three other kids had anything noticeable on their face. Only one little girl had hemangiomas (multiple, on her back). It was interesting talking to a couple other parents, eavesdropping on some other conversations. Not a bad wait...Andra of course was a champ, chatting up the other babies despite being on somewhat of a nap strike lately.
The short version (all I have energy for) is as follows:
Dr. Waner doesn't believe her hemangioma will ever go away completely. Ever. And it will likely be a slow involution at any rate, meaning yes, it'll still be obvious when she's 8, 9, 10...
Our laser doctor probably should have referred us to a surgeon (or at least discussed the idea) once her hemangioma got so puffy, as in beyond the scope of what a laser can really do. That irks me a bit. The initial laser doctor we saw (who ended up not taking our insurance) often refers patients to Dr. Waner. We looked into surgery all on our own. Not that it changes any outcome, just that it was a pain in the ass driving into NYC that much.
If we elect surgery, it would be an hour-long, outpatient procedure and after 24 hours Andra would not know the difference (as in, the recovery is minimal).
The best time to do the surgery is now up to 18 months (June) because the tumors (and/or the babies, I was confused) have more stem cells then and that will minimize any scarring (which would be minimal anyway).
We have to wait about 30 days to hear from our insurance company whether or not they will pre-authorize the procedure. Even if they do, that doesn't actually mean they will end up paying. But, supposedly the hospital is in network and they would pay the hosiptal costs, just not the doctor's fee, which is $8500. So presumably $8500 would be the maximum we would have to pay, 20%of that would be the minumum. Cheaper than we'd expected, not so expensive that money will factor into our decision.
Our decision is likely to go ahead and do the surgery. As early as late September, they said. We could have gone ahead and scheduled it...I needed time to just process for a few days. As much as I don't want Andra teased, etc., it's part of her and I will miss it, it will be gone so suddenly.
We liked the doctor. He has done a lot for kids disfigured by vascular birthmarks and doesn't turn anyone away if they can't pay.
Andra will be the same smiley kid with or without the hemangioma.
A quote from an article that kind of reinforces our decision that it's the right thing to do: "If you came to me with a big juicy red thing in the middle of your face and I slapped you on the back and said, 'Don't worry, come back in five years,' how would you feel?" asked Dr. Milton Waner, co-director of the Vascular Birthmarks Institute of New York, at Beth Israel, which this month was host of a meeting of physicians on treatment and research. "How can you talk to a child that way?"