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-   -   Adult Hemangioma (http://birthmark.org/board/showthread.php?t=2032)

anda 08-17-2006 04:05 AM

Adult Hemangioma
 
Hello. I'm a 22-year-old woman in relatively good health. About a month ago, a growth appeared on my neck, suddenly. It's bright red and (now) about the size of a vitamin pill. I thought it was a mole of some kind and wasn't too worried. It remained the same size for about 20 days, then grew noticably. My mother urged me to see a doctor, but I am uninsured and put it off. 3 days ago, I nicked it with my fingernail while scratching my neck. It bled uncontrollably, and I ended up in the ER. The doctor who treated me advised me to have my "mole" biopsied. I met with a surgeon today who told me it is a hemangioma. She wants to remove it to prevent any more bleeding incidents.

There seems to be very little information on adult appearance of hemangiomas that are not located on an internal organ. Are they that rare? Does anyone know why it didn't express shortly after birth? Is it possible that it is a symptom of a larger problem? (My surgeon wants to send it to pathology)

So far, the only source I've found that mentions adult hemangiomas says that they appear after age 40, are small and concentrated on the trunk, are usually not treated, and are unexplained. The pictures don't look like mine, and I don't fit that profile. Any more information anyone can offer would be greatly appreciated. Thank you!

missy 08-17-2006 12:20 PM

Very technically, the term hemangioma is not correct here. Vascular malformation might be the correct term to use. Doctors tend to use the term for adults, but hemangiomas are a childhood-only birthmark. Rather than research hemangioma, look up the terms "vascular malformation," "arterio venous malformation," or "AVM."

So far, though, the treatment seems correct. Are they going to remove it?

Missy

anda 08-17-2006 01:28 PM

Thank you, Missy. My surgeon wants to remove it as soon as possible, and to send it to pathology to be sure it's benign. (This concerned me when I read about hemangiomas in children, that they are not removed unless they cause other problems, and that they are benign.)

I may have to pay for the entire procedure out of pocket, and she wasn't able to tell me how much the operating room and hospital costs will be. Her fee will be $400-$500. I have been saving for my wedding next April, and I have a few thousand that I can spend. But, not knowing the cost of the OR makes me nervous. I've only had a LEAP done over a year ago, so I have no idea what it could be, even a ballpark figure. My surgeon advised me to fill out assistance paperwork with the hospital and call her when I'm ready to proceed. (She said she can't do the procedure in her office, which would be cheaper, because it's on my neck and has bled uncontrollably before. There's too much risk.)

I have been looking at articles on AVM. Almost all of them describe a lesion in the brain. (That's a little scary, considering one listed the possible side-effects as stroke, before it stated specifically that it was for AVM in the brain!) <sigh> I wish there were something that described a lesion on the skin, the risks and possible contributing factors, that occur in adulthood. I'm feeling more and more like a freak.

hankbartenbach 08-17-2006 04:03 PM

Hi,

I am a 24 year old with a vascular birthmark.

I would suggest maybe get another opinion from one of the doctors listed in your area that are in the resource section at the top of this page, or email Dr. Levintin who is the Ask the sergeon doctor on the home page of this website. He works with my plastic sergeon Dr. Waner. They both treat AVMs, AM, and mostly hemangiomas. I take pictures and email them to him in your email asking him what he thinks you should do.

My personal opinion would be to get it removed. But the question is could it come back and that really depends on what exactly it is.

Hope this helps.

Hank

Rondosa 10-01-2007 08:57 PM

Hi Anda - this is a great thread, although it's older so I'm not sure if you still check this site.

I'm in a similar situation as you. Here's my thread and photo:

http://www.birthmark.org/board/showt...3484#post13484
I'd love to hear any updates from you

Kristina


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