Looking for lymphangioma or hemangiolymphangioma specialists and treatment

[rinah22]

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

[nregazzi]

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

[Lorelei]

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.

[aj]

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

[missy]

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

[jorantex]

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..

[Hlynn143]

Originally Posted by nregazzi

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.

[nadiaamaaian]

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?

[missy]

Hi,

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

Thanks,

Missy

[rashmiranjan]

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 n’t 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 don’t 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