Vascular Birthmarks Foundation Forum

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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   Hemangioma on tongue (http://birthmark.org/board/showthread.php?t=2755)

lannaf 02-06-2008 05:54 PM

Hemangioma on tongue
 
Prior to first discovering your web site i was laying in bed trying to imagine a life without a purple bump on my tongue. Many hours later still in visioning this it came to 3:30 in the morning. I decided to take action and research online a "mangeoma" on the tongue. To no surprise nothing came up. At this point I'm thinking I may be the only one. Until I discovered that "spelling it out" is only useful to a 3rd grader. Now knowing that what I had was a "Hemangioma" things began looking brighter. I've had this problem since birth, and for the past 18 years I have adapted to this "thing" on my tongue. By talking without opening my mouth too wide, never sticking my tongue out for pictures, and avoiding heavy kissing. I had managed to have a minimum amount of people being aware of my difformity. It was until that one person finds out that has no soul for you to truly realize your not like everybody else. Names like "testicle tounge" began circling my school. I would spend nights in tears wondering "why me?" Why am I the one out of billions to have this problem? There really is no explanation for why one can not be what is considered normal. I might consider myself lucky that I am a healthy girl and have led what is considered a normal life. But I am not happy. I wish getting rid of this problem on my tongue could be as easy as my imaginations. Like coming across a genie bottle and having three wishes. Of course I would wish for health for my family and a sum of money. But above all would be for a normal, lump less, pink tongue. My family doesn't have a lot of money to play around with but if found a way to rid of my bump they would bend. If anybody has heard of treatments or somebody I could talk to or anything for hemangioma on the tongue please let me know. There is no such thing as distance at this point in my life, I am willing to travel the world. Thank you.

missy 02-06-2008 07:30 PM

Where are you located? We may be able to point you to a physician that can help you!

Missy

lannaf 02-07-2008 01:17 AM

i currently live in florida

nickbar 02-07-2008 05:21 AM

Hello,

You aren't alone and there are options for you. I am sorry you have felt this way so long and had to deal with cruel people. Though all of us have something we were teased about or felt insecure about....it never is easy to overcome. I have a feeling from just reading your brief introduction that you are very bright and wonderful individual.

I would recommend seeking an opinion from an experienced specialist. You can look over the physician's list on this site and/or contact me via email and I can help you get in touch with experts in the field. Also, take advantage of the ask the expert area on the main page of this site. The gift these specialists give our families is invaluable. If you have any trouble let me know.

Welcome to VBF

mvarice 02-08-2008 05:36 PM

you are not alone....
 
my daughter also had what was thought to be a hemangioma on her tongue. What we have found out is that Kayla has a venous malformation on her tongue. We are currently seeking treatment for her.

You are not alone there are others out there with this very problem. I have emailed and spoken with at least 5 other persons. The first thing that you need to do is find a vascular birthmark center with experience in treating this problem. There may be complications that you are not aware of....we contacted specialists listed on the nova website.

www.novanews.org there is also a message board there. I have found this website very helpful.

Please don't let what others say about you affect you. I can tell by your post that you are very special person. No body is "normal", this thing on your tongue is the thing that makes you different from everyone else.

Please let me know if you need anything.

melissa_varice@yahoo.com

sb9558 11-14-2010 02:10 AM

Quote:

Originally Posted by lannaf (Post 14349)
Prior to first discovering your web site i was laying in bed trying to imagine a life without a purple bump on my tongue. Many hours later still in visioning this it came to 3:30 in the morning. I decided to take action and research online a "mangeoma" on the tongue. To no surprise nothing came up. At this point I'm thinking I may be the only one. Until I discovered that "spelling it out" is only useful to a 3rd grader. Now knowing that what I had was a "Hemangioma" things began looking brighter. I've had this problem since birth, and for the past 18 years I have adapted to this "thing" on my tongue. By talking without opening my mouth too wide, never sticking my tongue out for pictures, and avoiding heavy kissing. I had managed to have a minimum amount of people being aware of my difformity. It was until that one person finds out that has no soul for you to truly realize your not like everybody else. Names like "testicle tounge" began circling my school. I would spend nights in tears wondering "why me?" Why am I the one out of billions to have this problem? There really is no explanation for why one can not be what is considered normal. I might consider myself lucky that I am a healthy girl and have led what is considered a normal life. But I am not happy. I wish getting rid of this problem on my tongue could be as easy as my imaginations. Like coming across a genie bottle and having three wishes. Of course I would wish for health for my family and a sum of money. But above all would be for a normal, lump less, pink tongue. My family doesn't have a lot of money to play around with but if found a way to rid of my bump they would bend. If anybody has heard of treatments or somebody I could talk to or anything for hemangioma on the tongue please let me know. There is no such thing as distance at this point in my life, I am willing to travel the world. Thank you.

WOW Im a 19 year old male who has EXACTLY the same thing I found out like 6 years ago when I bit my tongue playing football (soccer, Im from London!) mine is at the back of my tongue, and I know how you feel, also I open my mouth sometimes and I think oops can't open that wide lol. I noticed today it seems to maybe have got a little bit bigger and so maybe I should have it checked out! I thought I was really unique! Obviously not :D x

dianita 12-13-2011 04:16 PM

WoW !!!! Im 47 yrs old who had a hemangioma since birth and thought i was an only one ! lol, It effected my whole life..It was on my tounge and grew with me,,it was effected by my hormones also and would cycle with me.With swelling and bleeding every month. And stay that way with pregnancies.Ive had more than one surgery over the yrs and now have a reconstructed tounge ..its small but works. I can speek without slurring my words .There is hope,it may be complicated and a bit painful.There was more than one step in my surgeries,but its been 18 yrs now since the last and no one would ever know.If i can be of any help my email is dianita.a.butler@gmail.com

nickbar 12-20-2011 07:00 PM

Dianita. You likely do not have a true hemangioma. Unfortunately the term hemangioma is used incorrectly to describe all vascular lesions. True hemangiomas grow, are stable then go through involution. Vascular malformations grow with you and never go through involution and do get worse with hormonal changes.

JaCkMarTIn 01-06-2012 10:15 AM

I would recommend seeking an opinion from an experienced specialist. You can look over the physician's list on this site and/or contact me via email and I can help you get in touch with experts in the field. Also, take advantage of the ask the expert area on the main page of this site. The gift these specialists give our families is invaluable. If you have any trouble let me know.


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