Vascular Birthmarks Foundation Forum

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-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (
-   -   Daughter just been dignosed with Lymphangioma (

ksturrill 12-23-2009 04:04 PM

Daughter just been dignosed with Lymphangioma
My six year old daughter has just been diagnosed with Lymphangioma in her neck, it has taken 4 months to get this far and we've just been told they cannot operate to remove it as the risk of some facial paralysis is too high. We live in the UK and am really glad I've found this site as I'm struggling to get information. We've been told the best to do is leave her until puberty and see how much it's changed and as she will have grown in maybe easier to operate on then. Has anyone had a similiar situation or is this the standard route taken. She has been tired with it and not her general happy self, we were told this was because they think she had a bleed within the lump and this will happen sometimes. She also suffers with circumscriptum on her tongue, which makes her tongue bleed. She's had that for about 4 years but doctors never diagnosed it and we've now been told it's connected.

nickbar 12-23-2009 04:18 PM

I would highly recommend emailing Dr. Berenstein (and he can consult with Dr. Waner) about possible options for you daughter. Dr. Berenstein is able to monitor the facial nerve during surgery. Dr. Waner travels to Germany 3 or 4 times per year, so it might be possible to see him in person for another opinion. If you need help, please let me know.

ksturrill 12-23-2009 04:23 PM

Thank you, I will send him a message. How do I change my user name, I would rather it wasn't my email.

nickbar 12-23-2009 11:50 PM

Missy can help you with this. Missy :)

missy 12-24-2009 12:04 AM

Um. Well, I can take the username out completely, but it might not let you sign up again using the same email address. If you'd like to try that, let me know.


missy 12-24-2009 12:06 AM


I just changed your username to be everything before the @. Your password should be the same.


ksturrill 12-24-2009 09:57 AM

Thank you Missy, I appreciate that.

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