Multiple hemangiomas on the nose - Vascular Birthmarks Foundation Forum
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  #1  
Old 05-18-2010, 01:01 AM
sydjune2010 sydjune2010 is offline
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Default Multiple hemangiomas on the nose

I am curious if anyone else on here knows or has this problem of the nose. My 4 month old has newly been diagnosed. She has 4 unraised red spots down the bridge of her nose and the tip of her nose has one of its own. And underneath the red spots is a bulging blue area. I haven't found any information about having more than one in an area. We haven't been to the doctor yet.. I am just wondering as it will be awhile before we get in to see the specialist. Is it all part of one or is it really that many of them forming ... I am a little traumatized right now as this is very new information to me and help would be appreciated as I said there isn't anything I can find about there be so many.
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  #2  
Old 05-18-2010, 04:25 AM
ongsyen ongsyen is offline
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Hi
I was traumatized for 7 months time and I can understand your feeling.
Better to bring baby to a good specialist fast.

u may read bumfuzzle baby with nose tip H, they have done very well.
http://174.120.2.174/board/showthread.php?t=3666

My baby pic with nasal/nose tip H
http://174.120.2.174/board/showthread.php?t=3788

http://www.hemangiomatreatment.org/B...and-After.html
http://www.vbiny.org/
http://www.youtube.com/watch?v=C2kwHrd9p7s&NR=1

Hope this will help
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  #3  
Old 05-18-2010, 07:19 PM
sydjune2010 sydjune2010 is offline
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They actually got her scheduled for next Monday!! I am ecstatic about this as we won't have to wait to find out about this. Very surprised though.. makes me wonder if it is serious. Anyways, I need to make a post and attach a photo because my babies doesn't look like the photos I have seen. Thanks for the info!
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Old 05-18-2010, 08:23 PM
nickbar nickbar is offline
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If you need any help just let me know
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  #5  
Old 05-18-2010, 11:28 PM
missy missy is offline
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If you have trouble attaching photos, email them to contact@birthmark.org and I'll put them on your thread for you.

Glad to hear about your appointment... hope you hear good news!

Missy
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Old 05-19-2010, 06:20 PM
DevsMom DevsMom is offline
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So glad to hear that you're getting your baby in to see a doctor. What you describe sounds like a compound hemangioma with the superficial portion in different areas? The blue or dark color you see sounds like a deep hemangioma and the red areas are superficial.

Anyway, good luck and please let us know how the appointment goes.
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Old 05-20-2010, 02:28 PM
sydjune2010 sydjune2010 is offline
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Thank you DevsMom that gives me somewhere to start reading up on about it! I greatly appreciate it

* I did some investigating and this is definitely what she has .. both superficial and deep on the bridge and the tip .. which is greatly unfortunate for her. But it is good we caught it early ... it hasn't gotten too swollen yet.. just now becoming noticeable swelling.

Last edited by sydjune2010 : 05-20-2010 at 02:49 PM. Reason: addition ..
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Old 05-20-2010, 05:09 PM
DevsMom DevsMom is offline
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There are wonderful and very effective treatments available now. The best thing is that you are aware and have an early jump on things. My son is now 6 years old and he has a beautiful little nose There is definitely a light at the end of this long dark tunnel. The unfortunate thing about deep nasal hemangiomas is that most of them involute but leave behind fatty tissue, so even after involution you have a bulbous nose. Surgery can correct this. Lasers really do work wonderfully on the superficial portion to lessen the redness. I'll attach a few pics of my son along the way and what he looks like now. If you have any questions that I may be able to help you with please don't hesitate to contact me.
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  #9  
Old 05-23-2010, 03:42 AM
ongsyen ongsyen is offline
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hi DevsMOM

I saw your reply on my thread "Anyone know DR Marcelo Hochman" and thank you.What make you decide to let your son go for surgery at 2 yo and not earlier?

My baby will go surgery on her 8 months old, I am start feeling stress and scare and worry.....not easy
Hv u seen small baby at age 8 months went surgery on nose?
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Old 05-24-2010, 04:08 PM
DevsMom DevsMom is offline
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Quote:
Originally Posted by ongsyen View Post
hi DevsMOM

I saw your reply on my thread "Anyone know DR Marcelo Hochman" and thank you.What make you decide to let your son go for surgery at 2 yo and not earlier?

My baby will go surgery on her 8 months old, I am start feeling stress and scare and worry.....not easy
Hv u seen small baby at age 8 months went surgery on nose?
I have absolutely seen babies that young go in for surgery. It's all very much a personal choice. My son had a superficial portion also which we chose to have a series of pulse dye lasers done for. He was also on oral steroids for about seven months in his first year. Once we had exhausted the possibilities locally and still felt we needed more options we then decided to go out of state for treatment. My son had an MRI at 6 months and again at 18 months...we knew for a fact that his h was involuting but leaving behind fatty tissue as nasal tip hemangiomas tend to do. We had the option to either leave him with a bulbous nose or have the deep portion removed. We ended up have treatment with Dr. Waner. Some doctors prefer surgery sooner than others. The only down side to early surgery is that if it's done very early when the h is still growing they have to make certain to remove it all or risk regrowth. We could have had surgery done sooner but decided to give him (and ourselves) a break from doctors appointments and also let him get thru Christmas and his birthday which is in January....then we went for it. I feel the only down side to having surgery later is that the child is then walking and risks falling,,,which my son did do. He fell a few days after surgery and broke open some sutures but all & all no harm was done. To this day he does not remember going to NYC for surgery.

I very well remember how stressful it was to make the decisions I made for my son...and the millions of questions that go racing thru your mind. If there is anything I can do to help...answer questions, give you more info on our experience please contact me. Best of luck to you.
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