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  #1  
Old 02-24-2014, 04:59 PM
momof3inpa2009 momof3inpa2009 is offline
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Location: PA USA
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Default Surgery or no surgery

I would love to hear from those of you who have had surgery on their little ones to remove a hemangioma. We have given my daughter's plenty of time and it's just not going away on it's own. You can read her story by checking out my blog but anyway she has surgery scheduled for April and I'm still dragging my feet wondering if it's the right decision. She is going to be 5 in August. I'm just wondering about the effects of the small scar. It will be right in her eyebrow. A part of me wants to wait longer to see if the hemangioma finally goes away on its own or not but I've been told that some hemangiomas are the types that do NOT go away on their own. I'm just guessing hers' IS this type. I've been told that if she gets it done now at her age, etc. that the scar will be barely noticeable. Just still dragging my feet on this and any advice would be great. Thanks!
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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- 19 months old Did Timolol gel for awhile, stopped, & back on - 4 years old. Off of Timolol -doesn't seem to be doing anything. Surgery was a success!!! April 2014
http://lexihemangiomapropanolol.blog...roduction.html
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  #2  
Old 02-25-2014, 03:15 AM
smurph smurph is offline
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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:
https://www.facebook.com/shannon.hoh...02383&t 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!

Shannon
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  #3  
Old 02-25-2014, 03:19 AM
smurph smurph is offline
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I forgot to mention that I noticed some redness on my daughter's gums recently that I hadn't remembered being there before. I sent an email (and photo)to her doctor in Boston and also to Dr. Levitin, and they both said that it was residual hemangioma...and that it wasn't a big deal at all and not to worry about it. I trust their judgement in our case. That's why I think it might be a good idea to touch base with Dr. Levitin or even Dr. Fay (eye specialist)...you can ask Missy, the site manager, on here for help with that if you need it.
Shannon
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Last edited by smurph : 02-25-2014 at 03:35 AM.
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  #4  
Old 02-25-2014, 11:59 AM
momof3inpa2009 momof3inpa2009 is offline
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Location: PA USA
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My daughters is a deep hemangioma and I don't think shes ever had the red on the outside but used to have the blue. I just wonder how a scar would heal and agonize about a visible scar on her face. Thank you for your reply and sharing your pics your daughter is gorgeous and from the pics I did not see any scars! I will check into contacting Dr. L when I get on the pc I am currently on my phone. And btw my daughter's is still a hemangioma not left over skin, etc. they did an ultrasound and it showed. It gets puffy from time to time when she is upset but they don't think its growing. Thanks again. :-)
__________________
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- 19 months old Did Timolol gel for awhile, stopped, & back on - 4 years old. Off of Timolol -doesn't seem to be doing anything. Surgery was a success!!! April 2014
http://lexihemangiomapropanolol.blog...roduction.html
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  #5  
Old 06-19-2014, 07:10 PM
momof3inpa2009 momof3inpa2009 is offline
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Join Date: Dec 2009
Location: PA USA
Posts: 112
Default update

just to update. lexi had her surgery and all went well. she is healing nicely and the scar is barely noticeable. there's no doubt we made the right decision!
__________________
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- 19 months old Did Timolol gel for awhile, stopped, & back on - 4 years old. Off of Timolol -doesn't seem to be doing anything. Surgery was a success!!! April 2014
http://lexihemangiomapropanolol.blog...roduction.html
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  #6  
Old 06-20-2014, 12:32 AM
smurph smurph is offline
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Join Date: Jan 2007
Posts: 413
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Great news!!!! Thanks for updating!!
Shannon
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