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  #1  
Old 10-19-2010, 04:28 PM
simkel simkel is offline
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Default Hemangioma on nose

I have recently found out my 9 week old daughter has a deep hemangioma on the tip of her nose. We saw a specialist in our area (Spokane, WA) on Friday and he said to wait and come back in 6 weeks to see how it's growing. He said that most topical creams and steroids wouldn't help her due to the type of hemangioma and location. He also said that we would need to wait until she is 2 to do surgery to remove it. I'm so scared on how big it will get in two years and I'm not sure what I should do from here. This is our first baby so as you can imagine my husband and I are very sad and scared. Thank you for any input you might have to help me through this.
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  #2  
Old 10-19-2010, 10:03 PM
nickbar nickbar is offline
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Hello, I live in WA state and my son was treated by Dr. Perkins in Seattle. Spokane does not have known specialists. Please let me know if you need any help!
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  #3  
Old 10-20-2010, 04:17 AM
ongsyen ongsyen is offline
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Hi

I am from Malaysia and no expert here, 8 doctors told me wait and see and suggest the surgery after 4 years.Their approach is totally different from what I read from internet and forum.I never give up, I pray a lot and lastly Dr Marcelo Hochman had given my little princess a little pretty cute nose.Wooow....all the worry and anxious gone away.

I faced your situation before, but please believe no need to wait until 2, it will be hard time for both of u and baby.Why not go for pranalol and surgery earlier, find the right speacilist to help you.
Do found my baby progress at facebook nosehemangioma@gmail.com or look for nose hemangioma.Below is the reply from 2 expert surgeon.

Please do not worry - the timing for your baby's surgery is perfect for this type of hemangioma. Remember that our goals are the same - to do the best for your child.
I look forward to seeing you in Manila.
DrHochman


Dear Mrs. Yen ,
Thank you for your email and please accept my apology for not answering sooner. In general, hemangiomas such as your son's should be surgically removed at about 10 months of age. In the meantime, he should be treated with a drug called propranolol. This will shrink the hemangioma and probably make the surgery easier. If you wish to talk with me personally, I could arrange a telephone call in the next few days. My website at www.vbiny.org
Milton Waner
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  #4  
Old 10-22-2010, 01:38 PM
Mrs S Mrs S is offline
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Default Hemangioma on Nose

My daughter was also born with a Hemangioma growing inside the tip of her nose. She also had one growing externally on the little bit of skin between the nostrils. She has on on her knee, her shoulder blade and tiny ones on either side of her waist. She was put on Propranolol at about 9 weeks old and her birthmarks have not grown since. In fact they have all shrunk in size and have become lilac in colour and are flat. The one in her nose is not as blue as it was and you can't really see it. She was on Propranolol until she was 1yr old. She is now 17months and none of Hemangiomas have started growing again. Propranolol only works during the growing phase of the H. My daughter had no side effects at all. It's a fantastic discovery and I think you should insist your baby gets this treatment. It is a drug that has been used to treat heart conditions in children in the UK for over 50 years. It's wonderfull!!
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  #5  
Old 10-29-2010, 10:42 PM
simkel simkel is offline
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Quote:
Originally Posted by nickbar View Post
Hello, I live in WA state and my son was treated by Dr. Perkins in Seattle. Spokane does not have known specialists. Please let me know if you need any help!
Thank you for your response. I found Dr. Perkins off of this website and we just went over to Children's and had an appointment with Dr. Manning. However they can't start the medication for 3 more weeks due to scheduling. So it's a little stressful just watching this grow in the meantime. What kind of process did your son go through?
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  #6  
Old 10-29-2010, 10:44 PM
simkel simkel is offline
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Quote:
Originally Posted by ongsyen View Post
Hi

I am from Malaysia and no expert here, 8 doctors told me wait and see and suggest the surgery after 4 years.Their approach is totally different from what I read from internet and forum.I never give up, I pray a lot and lastly Dr Marcelo Hochman had given my little princess a little pretty cute nose.Wooow....all the worry and anxious gone away.

I faced your situation before, but please believe no need to wait until 2, it will be hard time for both of u and baby.Why not go for pranalol and surgery earlier, find the right speacilist to help you.
Do found my baby progress at facebook nosehemangioma@gmail.com or look for nose hemangioma.Below is the reply from 2 expert surgeon.

Please do not worry - the timing for your baby's surgery is perfect for this type of hemangioma. Remember that our goals are the same - to do the best for your child.
I look forward to seeing you in Manila.
DrHochman


Dear Mrs. Yen ,
Thank you for your email and please accept my apology for not answering sooner. In general, hemangiomas such as your son's should be surgically removed at about 10 months of age. In the meantime, he should be treated with a drug called propranolol. This will shrink the hemangioma and probably make the surgery easier. If you wish to talk with me personally, I could arrange a telephone call in the next few days. My website at www.vbiny.org
Milton Waner
Thank you for sharing. I'm hoping we are on the right track now that we have found a specialist in our state.
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  #7  
Old 10-30-2010, 12:15 AM
simkel simkel is offline
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Quote:
Originally Posted by Mrs S View Post
My daughter was also born with a Hemangioma growing inside the tip of her nose. She also had one growing externally on the little bit of skin between the nostrils. She has on on her knee, her shoulder blade and tiny ones on either side of her waist. She was put on Propranolol at about 9 weeks old and her birthmarks have not grown since. In fact they have all shrunk in size and have become lilac in colour and are flat. The one in her nose is not as blue as it was and you can't really see it. She was on Propranolol until she was 1yr old. She is now 17months and none of Hemangiomas have started growing again. Propranolol only works during the growing phase of the H. My daughter had no side effects at all. It's a fantastic discovery and I think you should insist your baby gets this treatment. It is a drug that has been used to treat heart conditions in children in the UK for over 50 years. It's wonderfull!!
Thank you so much for sharing your story. Would you mind sending me before and after pictures of your daughters nose(simkel@hotmail.com)? I would really like to see the stages with the use of propranolol. After seeing the specialist I'm feeling confident that we will be able to avoid the large growth that I was originally so fearful of. Now I'm starting to feel guilty about putting my baby on medication. Did anyone feel these feelings before staring propranolol? Did you see any changes in your childrens behavior? Kara will have a EKG and start taking Zantac before starting the propranolol is this what you experience also? It is so nice to receive some feedback thank you so much!!
Kelly
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  #8  
Old 11-03-2010, 02:00 PM
mommy2 mommy2 is offline
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Kelly -
It's absolutely normal to have these feelings about putting your child on medication. My son, Devan was on oral steroids for about 7 months and I felt the same way. He did eventually have surgical excision but the steroids did help to slow or stop the growth. It sounds like your on the right path to getting your daughter the help she needs. Best of luck to you.

Sarah
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  #9  
Old 11-03-2010, 06:05 PM
simkel simkel is offline
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Thanks, Sarah. It's a scary process and feels like a lot of responsibility.....I guess that's being a parent
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  #10  
Old 11-18-2010, 08:42 PM
vmarie40 vmarie40 is offline
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My daughter was diagnosed at 9 weeks with a nasal tip hemangioma. We noticed a "bruise" on the tip of her nose at about 6 weeks and thought nothing of it until it did not go away. When she was diagnosed her doctor wanted to do the "wait and see" method, and I allowed it for one month.

My daughters was a deep hemangioma, we never got the dark red appearance, just a blue-ish tint and it stared to grow. After a month of waiting (and growth) we went back to the doctor determined to get some kind of treatment. From all I read I really wanted to try propanalol. When we arrived the doctor said in that month he had gone to a conference and saw amazing results on some children with the use of propanalol. We were excited and scared but very optimistic to try it.

We are extremely happy with our decision, the "swelling" stopped immediately and the color improved. After just a couple of weeks we no longer had people ask, "did she bump her nose?", and she is a happy wonderful baby.

She is now 9 months old and you can barely see it. I think I only notice because I am looking for it. She will be on the medication through the growth phase I assume and will probably come off at the end of spring or early summer. Currently she is 17 pounds and takes 1.25ml of propanalol 3x a day.

I just wanted to share and hopefully give a ray of hope to other parents.
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