What would you do?

tawnyacooke · #1 04-16-2010, 07:32 PM

One of my DD's has an upper lip hemangioma (I'm attempting to put a pic on, its not the best pic of the H, but its the best pic I have at work) and one under the skin on her nose - it looks like a bruise in the picture. Around 4 months we were finally able to get into a pedi derm. We tried propranol w/ no results. We weaned off the meds w/ doctor supervision and didn't experience any regrowth. The pedi derm sent us to a pedi plastic surgeon as she felt that even if the H shrank on its own she's going to have residual skin left and surgery would be in her future at some point in time. Having an older daughter as well, I thought it would be better to have the surgery when she is little and doesn't realize what is happening. We went to the plastic surgeon and he said he couldn't do the surgery as its into her mouth and the corner of her lip which is one of the hardest things to recreat. Does that sound accurate? Should I get a second opinion from an actual H specialist? Where would you recommend? I'm in MO. Is there anyone that you could send pictures to and they would tell you if they could do anything to help. The plastic surgeon wanted to try a steroid injection. So we did that, and it's been 3 weeks now and there hasn't been a change. I don't want to continue w/ steroids b/c of the possible side effects. If I just have to wait this out I will, but she already smiles lopsided b/c of the H on her lip. I'm really leaning towards a 2nd opinion, but I'm not sure how to go about finding someone to do that.

I'm going to attempt a picture. If it doesn't work, I apologize in advance. [IMG]

[/IMG]

tawnyacooke · #2 04-16-2010, 07:46 PM

Better picture I think.
[IMG]

[/IMG]

smurph · #3 04-16-2010, 09:34 PM

Hi there. Your daughter is so cute!!! My daughter, who is 5 now, has an upper lip hemangioma with some of it going up towards her nose. I would definitely get a second opinion. My daughter was on oral steroids from 10 weeks-10 months of age. I know that some kids experience bad side effects from steroids, but my daughter actually did very well. She finished the steroids right before she turned one and we have been watching it involute on its own since then. Her doctor has said all along that she would probably have surgery when she was about 5. We were scheduled in Feb. but it got cancelled because she got a cold...and then the same thing happened in March (but that's a whole other story!) I have heard that lip hemangiomas sometimes leave the fatty tissue or extra skin and need some help to look normal.

She has seen a vascular anomaly specialist in Boston since she was very little so I would suggest seeing someone who really specializes in hemangiomas, etc. Or you could email one of the doctors on this website with a photo and they will email you back their ideas. I have found this very helpful. If you would like, email me hohen13@comcast.net and I will send you a link to some pictures of my daughter. Hers looks a bit different from your daughter's but the experience has been similar and you get an idea of how hers has progressed over time.

Good luck!
Shannon

abirk · #4 04-19-2010, 04:32 AM

Hi,

We live in Missouri, too. We have a ped. derm. in St. Louis that done laser treatments for my daughter but after two years it is still there (more of a pinkish gray color but same size). I heard great things about Dr. Buckmiller in Arkansas and I sent her pictures and they responded the next day recommending surgery. We emailed back and forth and her and her nurses answered all of our questions. We are schedule to have surgery in the fall (could have done it sooner but I didn't want to deal with the summer sun affecting the scar). The website is birthmarks.org and you can check out before and after photos on their site. Also, you can contact them through the website.

mjwrw · #5 05-04-2010, 12:42 AM

Hi!
My daughter is now almost four but had surgery to remove a fairly large, superficial hemangioma on her forehead when she was 13 months old. We sought an opinion from a local plastic surgeon but then I also emailed and called others all over the country for other opinions. I was able to email pictures of my daughter and they happily gave me on opinion over the phone or email. I would definitely try it if you are not near other specialists. We ended up flying from Idaho to Los Angeles to have our daughter's surgery done by Dr. Reinisch in Beverly Hills. We have absolutely no regrets.
Good luck!!
Rory

mrssuperspy · #6 05-05-2010, 06:04 PM

Hi there. My daughter's heman is basically in the same spot as your. My girl also has a sweet crooked smile! LOL We are pursuing surgery. This is because of her lopsided lip and the scars left from the ulceration.

mkrzarmomma2 · #7 05-08-2010, 05:29 PM

I would get a second opion. I highly reccomend Dr. Joesph Conlon in Springfield IL. He has extensive experience with H, and also has a good plastic surgeon to refer you to. My daughter is having surgery on 5/10. She is only five months. I agree with you that it is best to do it while they are little. It is also very important to know that there is a timeline in which they can do surgery. Dr. Conlon said that if we would have waitied a few months to see him, that surgery would not be possible then.