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)
-   -   Looking for lymphangioma or hemangiolymphangioma specialists and treatment (http://birthmark.org/board/showthread.php?t=1969)

Jeanette 06-26-2006 09:28 PM

Looking for lymphangioma or hemangiolymphangioma specialists and treatment
 
Our 13 week old daughter has preliminarily been diagnosed with a hemangioma or lymphangioma or combination of both, under her tongue. We live in Hawaii and have seen the best pediatic ENT on the islands, who has only treated a few of these types of malformations in her carreer. We are looking for the leading experts in the field to get a second opinion and hence find out about treatment options. We are willing to travel anywhere in the nation in order to get the best treatment. Can anyone give us suggestions on which specialists we should start with. I'd really appreciate the help.
Jeanette:)

nickbar 06-26-2006 10:20 PM

COntact Dr. Edmonds on the ask the expert on this site.
ALso, the msn vb support group has a few members with LM and one I believe is from Hawaii.

Corinne
http://groups.msn.com/vascularbirthm..._whatsnew.msnw

Joshua'smom 08-16-2006 09:00 PM

Lymphangioma/hemangioma specialist
 
Jeanette,
My 8 year old son has a microcystic lymphangioma that affects the right side of his neck and cheek, his whole tongue and the roof of his mouth. We are from Nasville, TN. We were lucky that there is an excellent specialist associated with the Vanderbilt Children's Hospital. His Name is Jay Werkhaven. Joshua was initially diagnosed at 18 months and had the lymphangioma in his neck excised(surgically removed). Dr. Werkhaven was not in Nashville at the time. 4 or 5 years later it recurred and we were referred to him. He is wonderful with Joshua and with us. Dr. WErkhaven has had to laser Joshua's tongue once and is very cautious with any needed treatment and explains everything every step of the way. His contact information is:
Vanderbilt Bill Wilkerson Center for Otolaryngology and Communication Sciences
Dept. of Otolarygology
7209 Medical Center East, South Tower
1215 21st Ave. South
Nashville, TN 37232-8605
615-322-6180 fax-615-343-9556

My name is Charlotte Chavous. Feel free to tell him I passed his name to you.
My e-mail is mcchavous@comcast.net

WiTJmom 08-31-2006 07:40 PM

There is a very good treatment option for Macro-cystic lymphatic malformation though the U of Iowa. Most child who never had surgery do very well and it about 95% effected. My daughter had this treatment and she has been swelling free for over four months now. If you would like more info on OK-432 email me at wibearmom@yahoo.com. Lora

aly2007 09-05-2007 05:54 PM

Treatment options
 
Hello, Jeanette!

My name is Amy and I am 23. I have congenital lymphangiom and hemangioma on my tongue. I have the combination of the two. My parents took me to a specialist in Houston, Texas. His name is Dr. Kevin Pireria. He deals with pediatrics of oncology and hematology. Mine is on my tongue, but it was spreading to the floor of my mouth, and that is when I had to have surgery. I was 18 when I started having the complications. If you would like to talk about the condition or talk about what it feels like to her I would be happy to help. I've never met anyone with the same thing. It would be great to be able to help out a family. My parents had to read and learn with first hand experience. You may contact me at amylyager@gmail.com

cyndy57 09-28-2007 10:26 PM

hi jeanette

my name is Cyndy and I am 50. I have Lymphangioma on my tongue also. I have been seeing specialists on and off since I was 14 years old. I had it on the right side of my tongue. This started as a small lump and grew progressively bigger until at 14 a specialist advised me to have it removed. 4 operations and 3 laser treatments later the top of my tongue looks almost flat but the underneath I think is growing back slowly. I have recently bitten it and it has reacted in a very big way. This site is quite inspirational in as much that I now know I am not the only one in the world with this condition, but it sure has felt like it over the last 50 years!!! I would be interested to hear from you and help in any way I can.

Kind regards Cyndy Russell

Cederløv 12-30-2007 09:21 AM

Hey..
I"m new here too.
I have a son how has LM. he has it on his ceek,sholder,neck,down to his longs.
He have no track, but he have a C_pap when he sleep. He is only 2 years Old, and he has been 1/3 off his life on a hospital. there is a good doctor who is helping him, but we feel we need more help. But we live in Norway (5 million people) so there is noet so many off this LM here. Is there some place neer Norway hos is expert on this LM?
Best Regards Fam Cederløv

missy 12-30-2007 01:05 PM

While he may not be our expert in LM, contact this man anyway:

http://www.birthmark.org/expert/ask_the_cmtc.php

He is in Norway and may know which physician you should seek.

Best of luck and keep us posted with your progress!

Missy

Cederløv 12-30-2007 03:40 PM

Thanks :-)
Good to now there is people how care for Us,
Many thanks From: Fam Cederløv

nregazzi 01-18-2008 12:13 AM

I have a question. I was born with Lymphangioma on my left arm extending all the way to the armpits. I never had had an issue with it before until very recently I have been having tingling sensations on my fingers and some nights numbness to the point of completely losing control of the arm. Does anybody else go through it? Has anyone gone to a doctor to it? I am looking for one specialized on the area as I have already had a medical mistake that cost me a finger done when I was younger.


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