Hemangioma on nasal tip help - Vascular Birthmarks Foundation Forum
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  #1  
Old 03-06-2011, 08:48 PM
heaend heaend is offline
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Default Hemangioma on nasal tip help

Just found this forum and have been reading like crazy through old posts. I live in Sweden and have a 9 week old that was born with a hemangioma on her nose, nasal tip to be more exact and even on the area between the nostrils. It is not as big as some that I've seen on the net. It definately has grown since birth but it is not huge (not yet anyway). It doesn't appear to be fast growing. It has mostly raised up a bit and become more red. We've been to a specialist this week and found out that the hemangioma has both a superficial and a deep component. She says she won't treat it with laser because it won't do any good and they'd have to put my baby to sleep with GA to do it and that it isn't big enough to treat with propranolol. My argument was to treat it now before it had a chance to get big to prevent a more complicated treament later on. She didn't think it was necessary but did add that it will more than likely grow and get bigger before it regresses. I'm wondering what others would do in this situation. When do you just wait and see and when do you treat? It is in the middle of her face! And if treatment can speed up the process why not do it?? Why are people so against treating these things? I don't understand it. I would love to post a pic but am unsure how.
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Old 03-06-2011, 10:29 PM
smurph smurph is offline
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Welcome! That must be so incredibly frustrating! Maybe you can send a photo to one of the doctors here on the "Ask the experts" page and they can tell you their opinion to see if they agree with your doctor or not. It will give you something else to go on. I hope everything works out! Keep us posted!
Shannon
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Old 03-06-2011, 10:35 PM
missy missy is offline
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You can send a photo to contact@birthmark.org and I'll post it to this thread in the morning.

And, welcome!


Missy
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  #4  
Old 03-06-2011, 10:37 PM
missy missy is offline
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Can you get in touch with:

Associate Professsor Agneta Troilius, MD, PhD
Laser & Vascular Anomaly Section
Dep of Dermatology
Skane University Hospital
205 02 Malmoe
Sweden
+46 40 33 65 18 tel
+46 40 33 12 11 fax

I'm afraid I do not have an email address or website listing for this, but this is the only listing we have in Sweden. It is my *opinion* that you need to see a specialist with this type of hemangioma.

Missy
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  #5  
Old 03-07-2011, 11:06 AM
heaend heaend is offline
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I am trying to contact Agneta Troilius in Malmo. I've e-mailed her. I've heard good things about her. I'll let you know what she says when I talk to her.
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Old 03-07-2011, 11:42 AM
missy missy is offline
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Oh, good. Let us know what happens!!

Missy
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Old 03-08-2011, 05:12 AM
bumfuzzle bumfuzzle is offline
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Hi,

I'm not sure if you've read our story about our daughter's nasal tip H, but if not here is the link. http://174.120.2.174/board/showthread.php?t=3666

We had great success with laser, despite the fact that we had both superficial and deep H as well. Also, our daughter never received any anasthesia. There is some pain, but it is over literally within seconds, and does not linger. Her total time out of our arms was ten minutes, the treatment was less than one minute, and by the time they gave her back to us she was usually not even crying.

We really highly recommend the laser, especially early on. That is the key for the laser. It stopped our daughters H from growing any further. She had her first treatment at eight weeks, and had a total of nine over the next eleven months. She's fifteen months soon and hasn't had one for over two months. We're hopeful she's done. Her nose looks great.

Anyway, best of luck to you. I hope you get the treatment that you want.

Pat
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Old 03-08-2011, 08:32 PM
heaend heaend is offline
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Thanks bumfuzzle for replying. I did read your story and had that in mind when I met with the specialist. Sweden is very conservative in treating small children. I am looking for someone that will treat her with laser while she's small and before it grows anymore. May I ask what kind of laser and what strength? I understand that it is the pulse dye laser (is that the same as IPL?) but are there different strengths to that? I want to know what I should ask for.
Thanks,
Heather
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  #9  
Old 03-13-2011, 05:43 AM
bumfuzzle bumfuzzle is offline
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Hi Heather,

To be honest I don't really know much of the technical stuff regarding the lasers. Like you said, it is the pulsed dye laser. As for the different strengths, that is controlled by our doctor. He judges the strength needed based on how the nose looks at that moment and can vary it accordingly for different areas. Our last two or three treatments he "turned down the power" quite a bit as Ouest's nose was looking pretty good already.

Sorry I can't give you more precise answers. I'd suggest contacting Dr. Delfanian. He is very good at answering questions like this.

Good luck with everything.

Pat
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Old 03-14-2011, 01:57 AM
nickbar nickbar is offline
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If you have any trouble getting replies from ask the expert, let me know and I will try to send them a direct email as well.
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