vascular (venous)malformation long term outlook for women - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo
1994 - 2015
Celebrating 21 years with
80,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Individuals Living with Birthmarks > Adults Living with Birthmarks

Thread Tools Display Modes
Old 04-12-2007, 06:03 PM
mvarice mvarice is offline
Junior Member
Join Date: Apr 2007
Location: South Bend Indiana
Posts: 3
Question vascular (venous)malformation long term outlook for women

Hello my name is Melissa. I have a daughter that is 7 yrs old. She has what we thought was a "hemangioma" on her tongue. After looking on this website and others I think that she may have been misdiagnosed. Her bump as we like to call it has not gone away, in fact I think it is bigger. We are going to the NOVA conference this weekend to see what we can find out. Hopefully we can get some direction for treatment.

What I am curious about is long term. My daughters "bump" is not much bigger than a nickle. It does not bother her, she has never complained about it. I have seen some posts on here saying that as they went through puberty and related hormone changes that they experienced some growth. I am curious to know how much?I am curious for the future of my daughter with it being on her tongue, this could mean some very scary things. I don't know if I am worrying to much or just being a good advocate. I think at this point knowledge is power and I am hoping that someone out there can give me some more power.

Please any informatin that you could give would be great.
Reply With Quote
Old 04-17-2007, 05:18 AM
hankbartenbach hankbartenbach is offline
Senior Member
Join Date: Oct 2002
Location: Nebraska
Posts: 533

Hi mvarice,

First of all welcome to the group.

I think going to the conference will hopefully calm you down alittle bit. Getting it properly diagnosed is what you should be focuseing on. If it is going to grow it is not going to grow over night it will be a gradual.

If you do not think it is a hemagioma it could also be an AVM. Do some research on that and see if it sounds more like what she might have.

I hope this helps.

Reply With Quote
Old 10-28-2008, 09:59 PM
PattiDallhoff PattiDallhoff is offline
Junior Member
Join Date: Oct 2008
Location: Dallas Tx
Posts: 2

Hi Mvarice,

It sounds like your daughter and I have something in common. I realize its been a long time since you have been on here but I want to help you if I can.

I am 27 and VERY active. At 6 or 7 my parents decided to take me to Children's Medical Center in Dallas. With a "humangioma" on my tongue, they were afraid it would impare me some how, so they decided to have surgery on it. A peice under my tongue was taken out and I still had a little dime size left on the top of my tongue.

Now after 20 years I am ready to start my own family so I am going to seek treatment to reduce it in size. It never grew to much but there are several spots on my tongue and its a little annoying. Nothing painful.

If you have any questions or concerns that I could help you with, please e-mail. Back in the 80's they thought that it would cause me speech problems or I would hemorage but it never did.

Now after having done research I am sure its a vascular malformation and I am seeking treatment at the Swedish Medical Center in Denver, CO. I am scheduled for the beginning of Dec.

Best Wishes,
Patti Dallhoff
Reply With Quote

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