Moved: nose tip hemangioma - Page 2 - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Help and Resources for Hemangiomas

Reply
 
Thread Tools Display Modes
  #11  
Old 05-07-2010, 03:06 PM
Mups Mups is offline
Junior Member
 
Join Date: May 2010
Posts: 1
Default

Quote:
Originally Posted by abirk View Post
My daughter has a small hemangioma on her nose and we did the laser treatments from the time she was six months old to twelve months old. It made the color go from a bright red to a greyish purple color but it is still there. She'll be turning three in the fall and it has not changed in a year and a half. She's schedule to have surgery in November to remove it.

We recently found out that h's on the nose (no matter the size) do not go away completely and do typically need to be removed by surgery. I feel good about our decision and wished we had the surgery when she was a year old.
Our daughter is 4 months old and has a small superficial H on her nose too. We are looking at the option of laser treatment at the moment...but I am concerned with it cause she is so small. Do you think you could email or post a photo of the before and after surgery? Thankx
Reply With Quote
  #12  
Old 05-12-2010, 05:48 PM
DevsMom DevsMom is offline
Junior Member
 
Join Date: May 2010
Posts: 23
Default

The decision for surgery is certainly not an easy one to make. I made it years ago for my son when he had benefited all he could from lasers and his nasal tip h was slowly involuting but being replaced with fatty tissue. We were always told that pulse dye laser would only help with the superficial portion. He is now 6 years old and doing very well. He has a small scar on his nose but we're happy and content with him how he is. Here are a couple pictures....I'm sure some of you who have been on this forum will recognize Devan.
Attached Images
File Type: jpg 7-2005beforeurgery.jpg (21.6 KB, 0 views)
File Type: jpg 10731_102756506404844_100000114846615_78838_7352390_n.jpg (49.1 KB, 0 views)
Reply With Quote
  #13  
Old 05-12-2010, 09:13 PM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default

Devan looks so grown up! How is it possible? Thank yo so much for the post and update.
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
  #14  
Old 05-13-2010, 02:48 AM
DevsMom DevsMom is offline
Junior Member
 
Join Date: May 2010
Posts: 23
Default

Quote:
Originally Posted by nickbar View Post
Devan looks so grown up! How is it possible? Thank yo so much for the post and update.
Hi, Corrine. I've been bad and haven't been on here in a long long time. It's nice to see you're still here doing such a great job. Yes, Devan is all grown up (or thinks he is anyway) and I'm sure all of your boys are too. Funny how the time flies.
Reply With Quote
  #15  
Old 05-14-2010, 09:45 PM
bumfuzzle bumfuzzle is offline
Member
 
Join Date: Jan 2010
Posts: 37
Default Pulsed Dye Laser

Hi,

In case you haven't seen it, here is a thread we've had going on regarding our daughter's nasal tip hemangioma and the pulsed dye laser treatments we've been performing on it. We're happy with the results, but I think more because we caught it so early. We use Dr. Delfanian in Minnesota. His information is on this board. E-mail him pictures and he'll give you an opinion immediately.

http://174.120.2.174/board/showthread.php?t=3666

Pat
Reply With Quote
  #16  
Old 05-17-2010, 08:43 AM
ongsyen ongsyen is offline
Member
 
Join Date: Dec 2009
Posts: 39
Default

Hi Mups

I am Malaysian(Asian) and most of the doctors here not familiar with H and advise for wait and observe.
When I look back,for 6 months, I was so anxious, worry and did searching all the time.Now my daughter is 7 months old and lastly we decide to bring her to Manila next month for surgery by Dr Marcelo Hochman even this decision is disagreed by our family doctor at Malaysia.
Now I start feeling a big stress cos the surgery day is come closer and somemore it is not supported by doctor here. But, this is for goodfaith of my daughter, I told myself to be confident with my right decision.

You may find my daughter pic before surgery
http://174.120.2.174/board/showthread.php?t=3824

will attach the pic after June 2010 surgery

Laser treatment for nasal tip H is applicable at very very earlier stage (few days) like BUMFUZZLE" case on top , most of the experience parents advise "no".

http://www.vbftexas.com/board/showthread.php?t=3261

http://archfaci.ama-assn.org/content/10/5/329.full

You may read this article, I decide not to bring my baby for laser therapy at Bangkok or Kuala Lumpur after reading.
http://www.ibufamily.org/comments/com50.html

I did contact Iisa Halmineva through facebook and she said her daughter H is same as my baby and she advise me go for surgery too and dont wait.

Hope this will help.
Reply With Quote
  #17  
Old 05-17-2010, 08:51 AM
ongsyen ongsyen is offline
Member
 
Join Date: Dec 2009
Posts: 39
Default

I would like to paste the article written by Iisa Halmineva(Finland) and do hope it will help those mum who have "hard" feeling as me.

http://www.ibufamily.org/comments/com50.html

My Birthmark Story
by Iisa Halmineva

I'd like to share with you the story of my daughter and her birthmark, and maybe offer some words of reassurance and the experience I've gathered during the first two years of her life, now that we've overcome our worst nightmares.

Little Mari was born in September 1998 in Finland, a perfect baby girl. A few weeks later the tip of her nose started turning blue/purple, and people started asking if she'd been too long out in the cold (winter approaching). I was worried sick, but the doctor told us it's just a birthmark called hemangioma, nothing to worry about, and nothing we could or should do about; it'll go away later.

Mari was three months old when we moved to KL, and around then her nose started growing quite fast, the colour turning dark red/purple, especially when she was crying.

Birthmarks are quite common in babies. It's estimated that every fifth baby has one, small or big, but you wouldn't usually notice them under clothing.

Having one right in the middle of your face, and a big one, is quite rare. At eight months the nose was already obstructing her eyesight, and the comments were getting more and more frequent: "What happened with the nose?", "What a big, fat, red nose!" and "What did you eat when you were pregnant?".

It's not what I did or ate. There is no explanation, birthmarks just happen. But obviously it was now time for something else than waiting and seeing.

We went through a GP, a paediatrician, then an Ear, Nose & Throat specialist in Gleneagles and were finally referred to a doctor at the General Hospital. Mari remained his patient for almost a year. First we tried a six-week course of steroids. The nose did get smaller temporarily (sometimes it helps permanently), but the side effects were awful: crankiness, crying, a huge never-ending appetite followed by what's called a moon-face. Though we were offered more steroids later, in the form of injections, I declined.

In the summer of 1999 we consulted a plastic surgeon in Finland, who recommended an operation, and were put on a waiting list for our next trip.

Then we tried laser treatments to improve the colour and reduce the size of the hemangioma. After nine treatments, all under general anesthesia every three weeks or so, I started questioning even this approach. The colour had improved a lot, but it was still the same big fat nose. Why, I didn't understand yet.

This Spring I started getting some second opinions. A local plastic surgeon said the worst option would be an operation: she would never look normal, we'd just create a big, life-long scar. We're trying too hard, he said, we must accept it as it is and wait and ignore the social and emotional pressure. He also felt the laser treatments were useless.

Another Ear, Nose & Throat specialist felt it'd be OK to operate, and until then continue the laser treatments. He added that the lesion could have been taken care of once it appeared, before its growth! Our doctor at the General Hospital was scheduling the next treatments, but couldn't tell us how many more would still be needed. Our Finnish surgeon had scheduled Mari's operation for June. Friends and relatives also had many different opinions.

At this point I was totally confused. As a parent and with no medical training I was nevertheless to make the final decisions about her treatment, right or wrong.

Mari was in the meantime growing and becoming more and more conscious about what was going on, the treatments, doctors, hospitals, and recovering from the general anesthesia became more difficult each time. Although she didn't speak yet or understand the thoughtless comments of total strangers, she must have wondered why people suddenly stopped smiling when looking at her, some looking quite appalled.

Very, very fortunately our doctor had recently attended an international conference about birthmarks in the US, and he gave me the name of Dr Milton Waner, a specialist in Arkansas. I found, ordered and immediately read a book by Shannon & Marshall with Dr Waner called "Birthmarks - A Guide to Hemangiomas and Vascular Malformations". It's not a medical textbook, but a guide dedicated to children and families connected with birthmarks.

Finally I understood quite a few things: it's really not what you or anyone did or didn't do during pregnancy. The right diagnosis is essential to determine the right treatment. Hemangiomas are one thing, and then there are many kinds of other vascular malformations, which can be difficult to tell apart, but develop differently and require different treatment.

Mari's case was quite rare: hemangiomas can be superficial or deep, but hers was compound. That's why the laser worked for the colour, ie the superficial part, but it didn't and couldn't reach the deep component. Being such a rare case I also understood those contradictory medical opinions. Hemangiomas almost always appear only a few weeks after birth (that's why the word birthmark can be confusing), grow during the first year and then start slowly involuting. Big, deep hemangiomas like Mari's can take quite a few years to disappear, or they don't disappear completely, no matter how long and hard you wait.

The part of the book I appreciated most was the chapter about emotional aspects. It even gave helpful tips about how to cope with the staring strangers. "Every child has the right to look "normal", and every doctor has the responsibility to see that everything is done to give each child this opportunity. The key to minimising the emotional trauma is early treatment and intervention".

I couldn't agree more. After a quite big, but in the end successful, first operation and the initially difficult period of healing, my punchline to other families facing a similar condition would be: don't give up and don't be discouraged. Ask for second opinions. The doctors these days can do wonders, though finding the right specialists can be tough. Go for early treatment: why wait until school age, like I was told so many times? Little ones still understand how they are looked at, even when they cannot yet express themselves. And, be proud of your beautiful, brave little ones!

Mari is now a healthy, happy almost two-year-old with a strong will bigger than herself, curly blond hair and capturing eyes people start to notice beyond her nose. And she will have a normal toddler's life until the age of four or five when she'll have the final "finishing touch" surgery.
Reply With Quote
  #18  
Old 05-17-2010, 09:46 AM
ongsyen ongsyen is offline
Member
 
Join Date: Dec 2009
Posts: 39
Default

Hi

Attached with pic of my daughter just took few days ago-7 months old.The H grow bigger now, follow her body size.

Hope this will help mum out there to see the progress nasal tip H
Attached Images
File Type: jpg DSC00482.JPG (56.1 KB, 0 views)
File Type: jpg DSC00488.JPG (49.0 KB, 0 views)
File Type: jpg DSC00476.JPG (75.3 KB, 0 views)
Reply With Quote
  #19  
Old 09-06-2010, 11:25 PM
dockanwal dockanwal is offline
Junior Member
 
Join Date: Sep 2010
Posts: 1
Default

hi
my 5 month old son has a strawberry haemangioma of the nasal tip . it appeared wen he was 6 weeks old and has been growing slowly . we have not noticed any growth in the last one month . we want to go for surgical removal . wen is the ideal time for removal .. and are there any chances of recurrence ? and wat are chances of leaving behind a scar?

please help.

Last edited by dockanwal : 09-06-2010 at 11:35 PM.
Reply With Quote
  #20  
Old 09-07-2010, 07:30 AM
ongsyen ongsyen is offline
Member
 
Join Date: Dec 2009
Posts: 39
Default

hi
My girl went surgery when she was 8 months and she played, slept and drink milk as normal after coming out from operation room.
Hers is compound H, Dr Hochman said it was the perfect time for surgery and H will not regrow.Scar is not obvious, you may go facebook -nosehemangioma@gmail.com to see before and after surgery of her H.

Or maybe you can email Helen Turnage who is assistant of Dr Marcelo Hochman and ask for Dr Marcelo advice
manager@facialsurgerycenter.com

Dr Marcelo Hochman is the founder of http://www.hemangiomatreatment.org and you may find him in youtube.
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump