16 yr old daughter diagnosed with hemangioma - Vascular Birthmarks Foundation Forum
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Old 09-19-2006, 04:22 AM
kmn9053
 
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Default 16 yr old daughter diagnosed with hemangioma

I am new to the forum. My daughter was just diagnosed with a hemangioma in the muscles of her pelvis. She had an MRI due to pelvic and back pain.They first had to rule out a soft tissue malignancy such as sarcoma. Then,thought it was a venous malformation. Now they're saying it's a hemangioma in the obturator muscle, although it doesn't have some of the typical characteristics. I'm confused and worried. They say the treatment for this is to sclerose it with alcohol, but there are some bad side effects. I get the impression that they're not even sure of the diagnosis, although they say that the Fine Needle Aspiration biopsy confirmed it. Does anyone have any experience like this? Can you have a hemangioma that only shows up on a scan?
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Old 09-19-2006, 04:44 AM
juliemn juliemn is offline
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Since they seemed a bit unsure, I would definitely suggest showing the images and results to a vascular malformation specialist. Hemangioma's are not generally still present at the age of 16. They are something that infants have. A doctor that sees this type of thing everyday can give you an accurate diagnosis. What type of testing did they do to come to this diagnosis? Some doctors will call many different types of malformations a hemangioma. They use it as a generic term.

If you could tell us where you are located, someone may have a good suggestion of a doctor for a second opinion. Especially if they're suggesting schlerotherapy.....please let a doctor experienced in malformations handle this type of treatment if you opt to have it done.

There are also specialists listed on the front page of this website. Many of them are fairly quick to respond to emails.

In the meantime, if you have any questions...feel free to ask.

Welcome!

Julie
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Old 09-19-2006, 02:11 PM
hankbartenbach hankbartenbach is offline
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Hi,

First of all welcome to the group.

I completely agree with Julie, you should diffently find a doctor that correctly diagnose your daughter. I was told I had hemangiomas for the longest time before correctly diagnosed with PWS.

Like Julie said the doctors on the front page are great. I would strongly suggest at least emailing Dr. Livinten the "Ask the Surgeon" He would probably be able to give you more of an opinion about what type of malformation your daughter has. One of his daughters had a hemangioma removed by a doctor, now his partner Dr. Waner who is also my plastic surgeon. Dr. Waner would diffently be willing to see your daughter in NYC.

Also, if you are interested in getting an opinion in your area under the resource section above you might be able to find a doctor in your area. If not someone on the group might know of someone who is not on the list. Dr. Waners contact info is on that list under the NY section if you are intersted in his opinion.

Hope this helps.

Hank
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Old 09-20-2006, 09:11 PM
nickbar nickbar is offline
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Please email Dr. Rosen from the "ask the expert". He is an interventional radiologist who is an expert with lesions such as your daughters. There are a handful of doctors that do have a lot of experience with vascular malformations and Sclerotheropy.

If you need any help, let me know.
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