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mvarice 04-12-2007 06:03 PM

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.

hankbartenbach 04-17-2007 05:18 AM

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.


PattiDallhoff 10-28-2008 09:59 PM

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

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