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  #1  
Old 06-16-2015, 04:33 PM
HenrysMom HenrysMom is offline
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Default Thoughts/experience with surgical removal?

I'm hoping others might be willing to share any feedback about their decisions to go forward with surgical removal. My son is almost 14 months old and has a raised and red compound hemangioma square in the center of his forehead. We've seen a number of dermatologists, but unfortunately didn't see the right people in time to try propanolol. Several months of topical timolol did nothing. According to our surgeon, he's a perfect candidate; his surgery should be quick and straightforward. The surgeon will attempt a pursestring closure, and scarring should be fairly minimal. Apparently the nature of his hemangioma indicates that he'd eventually need surgery after involution to remove the "ruined" skin that would be left behind, even if we left it alone to involute on its own. He's scheduled for surgery in a few weeks, but my husband and I keep going back and forth about the decision.

Our biggest concerns are with the anesthesia, though we know the risks are low. We'd like to do this sooner rather than later, because the stares, questions and even pokes (!) from everyone who sees him will surely start to affect his psychosocial development as he becomes more aware. However, we want to make the right decision, so I'd welcome any thoughts from others who've been through this...thank you in advance!!
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Old 06-17-2015, 04:13 AM
smurph smurph is offline
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Hi there! I just wanted to let you know that I was also very nervous heading into my daughter's surgery...especially because of the anesthesia. We always wonder if we are doing the "right" thing. It seems like you have put in quite a bit of thought and energy to get to this point and I bet you can trust your instincts that this is probably a helpful route for your son. I'm sure he would be fine either way, but as you mentioned, it is in a very noticeable location. You are taking his welfare (physical, emotional, etc.) into account and trying to do what you think will be best for him. I know it is so hard though! Before you know it, the surgery and recovery will be in the past and you can breathe a sigh of relief! Good luck and keep us posted. Where will he be having the surgery?
Shannon
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Old 06-17-2015, 04:16 AM
smurph smurph is offline
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Also, my daughter's surgery was at a Children's Hospital. I was able to go into the OR with her and be there with her until she was asleep. The nurses were awesome and explained the whole thing. You can ask if you would be able to do the same.
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Old 06-17-2015, 01:28 PM
missy missy is offline
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I'm sorry.... people POKE him? That's strange.

Please keep us updated on your decision! Let us know how things turn out.

Missy
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Old 06-17-2015, 07:51 PM
HenrysMom HenrysMom is offline
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Shannon and Missy, thank you so much for your responses! Shannon, his surgery will happen at Mass General; we had a consultation at Children's in Boston, but apparently they don't consider surgery on children under 3. How old was your daughter when she had surgery? Were you/are you happy with the outcome? I'm relieved to hear that you were able to accompany her into the OR; I'm hoping that'll be the case for us, too.

Missy, I know!! He's been poked by a few little kids on the playground/at my older son's preschool before I had a chance to intervene. Genuine and harmless curiosity, but still. Adults mostly stare and occasionally make bizarre comments. We're leaning towards surgery to spare him more of this, but would love to hear about others' experiences! Thanks again
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Old 06-18-2015, 02:16 AM
smurph smurph is offline
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Hi! Actually, my daughter's surgery was done at Children's in Boston! She was 5 at the time though. Her doctor recommended it at that point for her particular situation. We were very happy with the outcome. Here's her album-
https://www.facebook.com/shannon.hoh...02383&t ype=3

You can see if Mass General has a Child Life Specialist. I spoke with the one on the phone at Childrens before Faith's surgery and she "walked" me through what to expect and met us at the hospital too in the pre-op area. You can probably find out if they will let you in the OR so you will know what to expect.

Where do you live? We are in NH. Good luck with the surgery! Keep us posted!
Shannon
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Old 06-18-2015, 08:58 PM
HenrysMom HenrysMom is offline
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Thank you, Shannon! Was her surgery done by Dr. Mulligan? I looked at Faith's album - what an amazing difference. You must be thrilled. I will definitely ask about a Child Life Specialist at MGH - having our hands held would be invaluable! Thanks again!
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Old 06-19-2015, 02:55 AM
smurph smurph is offline
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Yes, Dr. Mulliken did it. Let me know how things go. When is the surgery again? I am supposed to be bringing my mom to Mass General for her chemo soon...maybe I will be there on the same day?
Shannon
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Old 06-19-2015, 06:09 PM
HenrysMom HenrysMom is offline
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Hi Shannon, I've heard that Dr. Mulliken is THE guy for these surgeries. We're scheduled for 7/1 - let me know if you'll be there!
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Old 06-20-2015, 02:43 AM
smurph smurph is offline
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Bummer- I will be there on the 9th. Good luck! I will be thinking of you. Keep us posted!
Shannon
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