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-   -   Looking for Information (http://birthmark.org/board/showthread.php?t=6700)

Emma1 01-31-2014 08:02 PM

Looking for Information
 
Hello Everyone,

I am new to this site, and I am looking for some information. Our daughter was just diagnosed with a Vascular Venus Malformation on the hand. It was originally treated as a Hematoma, and we think the VVM came out as a result of her injuring her hand. We are waiting for ultrasound, and MRI.

I would like to know what the chances are that it is just localized to the hand, or do most people with this have it in other areas of the body? Also, she has a lot of puffiness under her eyes, which we have mentioned to the doctor. She has had her eyes checked, and everything looks good, but she has this puffiness all the time. I am just wondering if anyone else has this problem?

How well does sclerotherapy work?

Thank you.

Emma1

missy 02-01-2014 01:34 PM

Hi and welcome!

A good percentage of the vascular malformations I've heard about are localized. Unless she is having problems in other areas, I wouldn't worry too much.

How old is your daughter? Did she have puffy eyes before she was diagnosed with a vascular birthmark? When you say they checked her eyes, how?

Missy

Emma1 02-02-2014 05:57 PM

Hello
 
Hello Missy,

Thank you for your post. She is 11. She had her eyes checked at the Optometrist. He said she didn't have any blood under her eyes where the puffiness is, but said it was lymphatic fluid. She constantly has the puffiness all the time. It never seems to go away. They also checked her with a specialized test where they can go 80% behind the eye, and the Optic Nerve looked good in both eyes.

They are also sending her to a Hematologist because she had some blood work done, and her numbers were all over the place. They want to re-test her for Von Willebrand which is a blood disorder. Her platelets are good, but she always looks pale as well.

So, most people with this just have it in one area, but it can occur in the rest of the body as well?

Thank you for your help.

Emma1

Emma1 02-02-2014 06:00 PM

Missy, they are also looking at doing sclerotherapy on her hand. Do they usually do it with a local or general anaesthetic?

missy 02-02-2014 11:21 PM

It can occur anywhere in the body, yes.

I don't know if her doctor would choose to do a local or general... I think that would depend on depth. It might be better to go with general, given her age.

Glad her eyes are ok. Let us know what the hemotologist says.

Missy

Emma1 02-03-2014 01:32 AM

Hello
 
Hello Missy,

Thank you very much for the information. Yes, I will update as soon as we know more.

Emma1


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