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-   -   26yrs old - Hemangioma Diagnosis...what to do? (http://birthmark.org/board/showthread.php?t=2583)

Rondosa 10-01-2007 09:43 PM

26yrs old - Hemangioma Diagnosis...what to do?
 
2 Attachment(s)
Hi Everyone,
I'm glad I found this forum, it seems like a great resource full of friendly people.

I'm 26, going on 27, female and quite active in my day to day life. Earlier this year I was diagnosed with a hemangioma on my upper right arm.

The lump is about the size of a golf ball and quite firm - but no redness. It's tough to see in the pictures and varies depending on what I'm doing. The more I workout or use the arm, the bigger it gets and it gets quite hard. When it's like this, it's quite uncomfortable.

The lump appeared around 2002 and was about the size it is today. My old doctor told me it was scar tissue from my muscles. My newer doctor thought it might be fat, sent me for an ultrasound but when it came back as having blood flow, they sent me for an MRI. The radiologist, earlier this year, diagnosed it as a hemangioma. My doctor sent me to a local vascular surgeon and he said options are to cut it out, but that's through my groin which doesn't sound appealing. His advice was to leave it alone.

Being 26, you can see why this is weird for me since most info on the subject says that babies get this, it's likely on their face/head and it often goes away.

Does anyone have any advice or heard of such a case? I've emailed Dr. Martn Mihm though I am not sure if he's the person to reach.

Thanks for reading.

Kristina

mmarrari 10-02-2007 01:56 AM

Hi! It is my understanding, and I am no doctor, that hemangiomas only appear in infants. I would recommend seeing a vascular specialist to make sure you got the correct diagnosis. Treatments are different for hemangiomas versus vascular malformations, for example... When you mentioned it changes size when you work out it reminded me of other cases of people with VMs. Maybe email the expert on this site to double check? Good luck!

sweet pea 10-02-2007 01:57 AM

the term hemangioma is not exactly 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. did you ever have a biopsy done? that way they can be sure of what it is. it says that they are likely to be on the face/head, but it doesn't necessarily have to be there. they can be just about anywhere on the body. i would also try and get a second opinion.

Rondosa 10-02-2007 04:02 AM

Hi - thanks for the replies so far, what you are saying makes a lot of sense. I'm looking forward to a reply from the doctor to see what he says too, and armed with this info I'm going to keep researching.

Keep the opinions coming :)

Thanks!
Kristina

nickbar 10-02-2007 07:05 AM

Kristina, often the term Hemangioma is used generically to describe vascular lesions, when in fact true hemangiomas are present at birth or shortly after,, go thru a growth phase and then involution. Most are gone in the first two years. Malformations on the other hand can appear later and often growth is seen with the child or during puberty/pregnancy etc. I would encourage you to find a specialist with experience treating/managing vascular birthmarks. If you need help finding such a specialists, please let me know. This site has a great resource of doctors.

Corinne

LaraCanne37 11-10-2007 05:40 AM

I just wanted to reply to this thread and say that my upper lip hemangioma only became 'apparent' during my pregnancy at the age of 21. Somewhere toward the end of my pregnancy it grew pretty large and seemed to be responsive to the pregnancy hormones (which ones I have no clue!) Before my pregnancy I had no disfigurement. I have not yet come across another case such as mine, but it is certainly possible for some types of hemangiomas to develop in adults later on in life, as it did with me!

Lisa_99 11-11-2007 04:19 PM

HI Kristina --

Have you had another or test or diagnosis since your posting here? what are the results?

LIsa
Addie's mom
KT/ PWS -- 18 yrs old
Mississippi USA
em: lisa.williams99@gmail.com

hammer239 01-28-2008 10:19 PM

I have the same problem on my leg. I had surgery last year. Their called avm's but some are also hemangioma's. They surgery only got rid of them for a while then they came back. I believe they spread more. If anybody has any new info let me know.

Rondosa 01-29-2008 02:29 AM

Quote:

Originally Posted by Lisa_99 (Post 13824)
HI Kristina --

Have you had another or test or diagnosis since your posting here? what are the results?

LIsa
Addie's mom
KT/ PWS -- 18 yrs old
Mississippi USA
em: lisa.williams99@gmail.com

Hi - nothing new since posting here. The lump grows and shrinks just as before, but never growing past the size in the photos.

I don't know what to do now - with Chris' news that his came back after surgery, I feel like ther'es not much I can do. I just have to keep an eye out for new ones, but it's been about 5 years since this one just showed up so I hope that's the end of it.

It's upsetting since I'm a quite healthy person - I eat very well, I'm in shape and exercise frequently and have a generally balanced life. But yet I have mild PCO (poly cycstic ovaries) and this hemangioma/avm. :(

Anyway, any new people out there?

Kristina

Boccu4 11-07-2008 09:57 AM

Adult Hermangioma
 
Hi Kristina,....
My daughter is 21 and just called me to tell me that she noticed this red lump on her leg. She is at college and they told her it's a Hermangioma. What I have been reading is that they come at birth . It's on her calf and I expect to take her to a vascular surgeon when she comes home for Christmas.
I am glad to see that on this site I have read at least 2 cases where they develop as adults. Does anyone have any additional information.
Thanks
Mary
ER NY


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