Looking for lymphangioma or hemangiolymphangioma specialists and treatment - Page 2 - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Lymphatic Malformations (also known as cystic hygroma and lymphangioma)

Reply
 
Thread Tools Display Modes
  #11  
Old 01-18-2008, 03:26 AM
rinah22 rinah22 is offline
Junior Member
 
Join Date: Jan 2008
Posts: 1
Default

Hi,

What you are describing sounds like Carpal Tunnel Syndrome. I don't know if there is a connection between Carpal Tunnel and Lymphangioma, or if this is what you are experiencing. I have had Carpal Tunnel on and off since my first pregnancy (for about 7 years), so that's my experience with it. Your hands and arms get numb at night and you experience lots of tingling in the hands doing fine motor activities.
Hope you find some help!

Rinah
Reply With Quote
  #12  
Old 01-24-2008, 03:46 AM
nregazzi nregazzi is offline
Junior Member
 
Join Date: Jan 2008
Posts: 2
Default

Rinah,

Thanks for the reply. I saw a Dr. today who discarded that possibility and referred me to a vascular doctor. He believes the lymphagioma increased in size and is compressing a nerve.

Nathalia
Reply With Quote
  #13  
Old 02-05-2008, 02:52 PM
Lorelei Lorelei is offline
Junior Member
 
Join Date: Feb 2008
Posts: 1
Default other recommendations in the Western Kentucky/Tennessee area?

I saw Charlotte's earlier post about the doc in Nashville. By any chance, do you know of anyone in western Kentucky? Either way, do you recommend anyone else within 2 hours or so of western Kentucky area? Southern Indiana, Tennessee? Interested in particular in someone knowledgable about nonsurgical options -- i.e., the shots.
Reply With Quote
  #14  
Old 10-13-2009, 01:32 AM
aj aj is offline
Junior Member
 
Join Date: Aug 2009
Posts: 1
Default

my son is 16 and has lymphmalformation on his cheek, neck and tongue, he is having flare ups on his cheek the past two months, has anyone had surgery on the cheek we saw Dr. Faye and he is suggesting that. to cut from his ear to his jaw and open up his cheek and take some of it out. anyone know of this, thanks for any comments,aj
Reply With Quote
  #15  
Old 10-13-2009, 10:23 AM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,724
Default

I would trust Dr. Faye's opinion. I would get a second opinion before I let anyone operate on my child, but I would give Dr. Faye's suggestion a lot of weight.

When your son has flare ups, what happens? swelling and pain both or just one or the other?

Missy
Reply With Quote
  #16  
Old 01-27-2010, 04:21 AM
jorantex jorantex is offline
Junior Member
 
Join Date: Jan 2010
Posts: 2
Default Lymphatoc malform of the tongue 4 yr old son

My son is 4.5 yrs old and was diagnosed with lymphatic malformation of the tongue and is also on the floor of his mouth. He has undergone 7 laser treatments since the age of 19 months..
Dr. Waner in new york and his team are the best...they did the first 3.. we have since been going to Dr. buckmiller in Little rock, Arkansas.. Dr. waner helped start this vascular anomolies center at the childrens hopsital. She is amazing. Since its closer to Texas we have been going there for the last 4 surgeries. I would suggest contacting either one of these...They really care as they have kids of their own with these conditions..
Reply With Quote
  #17  
Old 05-04-2012, 03:01 PM
Hlynn143 Hlynn143 is offline
Junior Member
 
Join Date: May 2012
Posts: 1
Default You're not alone

Quote:
Originally Posted by nregazzi View Post
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.
I hope I am replying to this correctly. Hi, my name is Hannah. My fiance has this same condition. He too has this on his arm which has extended down to his hand and back up which we are now finding the lumps behind and under his armpits. He has had to live with this condition as he was told it was a rarer case and doctors were unfamiliar with it and did not have better solutions than amputation. I am in seek of a specialist for this now. Im mostly getting Ears, nose, and throat specialist coming up when I google. One ENT informed me to seek a dermatologist. He goes thru the numbness and the pain too.
Reply With Quote
  #18  
Old 09-04-2012, 09:16 PM
nadiaamaaian nadiaamaaian is offline
Junior Member
 
Join Date: Sep 2012
Posts: 1
Default

Hola.
Soy De Mexico. Y A Mi Bebe De 7 Meses Le Han Detectado Un "probable" Hemangioma En La Mejilla Derecha No Es Roja Pero Es Una Bolita. Estamos Buscando Otra Opinion. En Mexico Hay Algun Especialista?
Reply With Quote
  #19  
Old 09-04-2012, 10:56 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,724
Default

Hi,

Try here: http://birthmark.org/node/47#mexico

Thanks,

Missy
Reply With Quote
  #20  
Old 09-22-2012, 05:56 AM
rashmiranjan rashmiranjan is offline
Junior Member
 
Join Date: Sep 2012
Posts: 1
Default

Hi Dear,

My 1.6 years daughter is suffering with Lymphangioma on her right thigh which we came to know during the vaccination on her right thigh.
This was there from her birth but we were advised by doctor that it was only thickness which will go out once the baby will start walking. As there was no pain in the same part so we could nít recognize it. But after 4 days of vaccination she felt pain as well as fever and that part also swelled little more than before. She is OK now with mild pain. I have shown to best surgeon in orissa (BBSR) and they are advising to go for surgery which I donít want for baby as they are not giving 100% accuracy. It may reoccur in life.
Can anybody please guide me where can i get the best pediatric surgeon India or anywhere in the world who can help us to get my baby well or more about the injection like OK 432 which i just came across in the internet.


If anybody knows then please send me the mail or reply me on the same forum.

my mail ID: Rashmim58@gmail.com
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
successful propranolol treatment! ruthiesmom Help and Resources for Hemangiomas 15 12-18-2013 12:23 PM
My son's first laser treatment - advice needed please? MelissaP Port Wine Stain Help and Resources 5 02-27-2008 11:05 PM
PWS Treatment Specialists in VA/DC? Gusto Port Wine Stain Help and Resources 0 09-04-2003 12:08 AM