Vascular Birthmarks Foundation Forum - View Single Post - Surgery or no surgery
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Old 02-25-2014, 03:15 AM
smurph smurph is offline
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Join Date: Jan 2007
Posts: 457

Hi there! First of all, I will say that I am not an expert in this at all. All I can share is my own experience and thoughts. I read through a little bit of your blog to get some more background information. My 8 year old daughter has a lip hemangioma which which she had surgery on when she was 5. At that point they said, that it probably wouldn't go away much more on its own, although it still might somewhat-but she was getting ready to go to Kindergarten and like you, we always had in the back of our minds that this might be coming. Basically, it would just remove some of the hemangioma that was left, some of the fatty tissue and smooth things our to make her lip look more symmetrical. She also had some leftover redness about her lip leading up to her nose which she had 2 laser treatments on a year or 2 after the surgery.

So, I guess I'm thinking that in my daughter's case, it wasn't just all fatty tissue left, probably some hemangioma too and the surgery went very well. The hemangioma was actually "one" with her lip, so I'm sure there was some "vascular" element to it, which may have made it more complicated but it was definitely doable. I would expect most surgeons would anticipate this to be a possibility in any surgery to remove a hemangioma.

Here's a photo album of her journery. I know that your daughter's is in a different location, but maybe it will be helpful. I also AGONIZED about the surgery...about whether we should do it or not, when, why, what it???? and then her surgery got delayed a few times because she kept getting colds right beforehand. It was torture for me because I was still a little unsure and it just kept dragging out. Our pediatrician put me at ease, saying that there really was not one right decision to be made. We just had to go with what we thought would help and she would be fine either way, no matter what.

I would also suggest that you email Dr. Levitin on the "Ask the Experts" page here if you haven't already. He might be able to give you his opinion and help to put your mind at ease, especially since it seems like it's an unusual case (it's so unusual that it seems to be growing????) I think when there are questions-you are doing the right thing to search for more answers before making your final decision...again so you can be more at peace with it.

You probably won't feel entirely settled about it until it's over though!!! That's how I felt anyway. I remember saying to my daughter's doctor at her 1 week post-op visit that I thought it still looked really puffy and maybe we should have just left it alone......he kind of laughed and was like, "It's only been a week!!!" I guess I was looking for that reassurance that I had done the right thing. But sure enough, weeks to months later, it looked great and that chapter was behind us. You will get there too.

Here's her album: ype=3

By the way, I think it's a great thing you have kept your blog. It really does help in looking back on things and documenting everything. I am soooo happy I did it. And even Faith will look back at it now and is curious about all the stuff she doesn't really remember.

Best of luck! I have a feeling things are going to work out just fine!

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