Vascular Birthmarks Foundation Forum

Vascular Birthmarks Foundation Forum (http://birthmark.org/board/index.php)
-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   lymaphatic malformations on tongue, neck, cheeks attaching to muscle and bone (http://birthmark.org/board/showthread.php?t=2916)

sunsheyen69 06-07-2008 12:31 AM

lymaphatic malformations on tongue, neck, cheeks attaching to muscle and bone
 
Hi. I'm new to this group and glad to finally find some other people
that may have problems like my son. I have a 2 1/2 year old son that
was diagnosed with cystic hygroma in his cheeks when he was almost 1.
He recently had a new MRI and it is also in his upper neck and tongue
now. The doctors also said that the cheeks tissue is attaching itself
to his muscle and bone in his face. We are trying to find adequate
treatment for him because it changes everything now with it being in
his neck and mouth. Does anyone have any similar experience with this
and have you ever heard of it attaching to the muscle and bone? Just
hoping someone could shed some light on the subject. He's being seen
at St. Louis Hospital right now. We're up on the MO/IA border. Thanks
Sarah

linda6969 08-07-2008 04:30 PM

My daughter has the same thing
 
Hey,
My daughter was diagnosed with it when she was born. She was born with a large cyst on the right side of her neck. She outgrew that, she's 2 now, until about a week ago, a new large one appeared overnight on the left side, on her cheek and neck. It sucks. I'm afraid she will be disfigured. That scares me about it attaching to the bone.
I'm in the process of getting a referral to go to the childrens hospital in Cincinnatti, and see what they say.
Sucks.
I feel for you.

sweet pea 09-03-2008 01:03 AM

I have always been told by the doctors I have seen that it cannot and will not attach itself to any surrounding structure(bone, muscle, organ, etc). It may push against it or try to move it, but it won't attach to anything.

tessamom 09-03-2008 03:30 AM

There are other up in the st louis area We live in wisconsin; and yes it is possible that the LM has invaded the other tissue at Lymphatic tissue is in almost every body part/ however there is great ways to manage LM. Tessa has one wraped around her facial nerve it hard to tell them apart, want to chat anytime email me at wibearmom@yahoo.com

ebu 11-09-2008 05:27 PM

Hey there

My son has lived with LM ind his mouth and tongue since he was born...we have seen it grow and change - even though they said it probably would not do so.

We are quite sure thar his LM is in other parts of his body as well - even though the doctors seem to be unaware ore unwilling to accept this fact.

To us it seems like the doctors dont have to much experience and knowledge, maybe because there is so very few of these patients world wide.

I am sure that this group will help spreading the knowledge and the sharing of experience will be of importance in the development of new types of medication and surgery.

Keep up the spirit -

Eva


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