Vascular Birthmarks Foundation Forum - View Single Post - Frustrated with Dr
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Old 02-20-2013, 03:32 AM
jennr11 jennr11 is offline
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Join Date: May 2012
Posts: 14
Default Frustrated with Dr

My daughter (now 11months) has a large hemangioma on her forearm/wrist/thumb. We've been seeing a dermatologist and have been on propranolol for 9 months now. At our last dermatology visit he thought we would be ready to come off the medicine soon and we were ready to at least start seeing a plastic surgeon for future planning for laser treatment. The propranolol did help her hemangioma, but by the time she was started on it had already grown so much and she had multiple ulcerations. She now has scars from her ulcerations and the hemangioma is smaller, but still very visible.
We had the plastic surgeon visit today and I have NEVER left a drs office with such a bad feeling in my heart. We waited over an hour past our appointment time (I know this happens, no big deal) to see him and he literally spent 5-7 mins with us before walking out of the room. He instantly starts talking about excision with multiple skin grafts and multiple surgeries when she's a bit older. He repeatedly told me "her arm will never look normal no matter what i do" and never once spoke to her or looked her in the eye. He repeatedly cut me off when I tried to speak and didn't listen when I did speak. His only "plan" for now was to stay on the propranolol until the prescription runs out (next month) and then if it starts to grow again he would be willing to do steroid injections on her. I'm sorry but from all that I've read is that not a backwards approach to treatment at this point? When I was finally able to get a word in I just said "Im sorry but we were told we were being referred to talk about laser treatment." His answer was that "some" drs might do that but the laser will burn her skin and do more damage. He then said "You can come back in 3 months and I'll look at it again." He will never lay a finger on my daughter again. If he can't take the time to actually listen to me in the office then I would hate to think how he is in surgery. His credentials claim specialty in hemangiomas and hand surgery. I saw none of that.
I understand we don't always get what we expect from drs or life in general, but when you've been hoping for this appointment for almost a year now you can't help but feel defeated. I plan on calling her dermatologist tomorrow and telling his nurse everything that happened and asking for a different referral.
Sorry I really needed that vent with someone who can understand.
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