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Nicolefila 09-25-2007 04:45 AM

A little help
Hey everyone. I am a 21 y/o female w/ a large venous malformation (hemangioma) that goes from my lower left leg, into my hip and has recently begun to make it's way through my stomach. I am just looking for some people to talk to that are going through the same thing as I am. I know this is a very rare medical condition which is why sometimes it may be even harder to deal with then something like cancer. I guess I shouldn't say that because I don't know what it's like to have cancer but at least with cancer people know what their options are and what can and cannot be done about it. I mean there are some options for people with what I have but for me, either they don't work, they are too risky or they end up causing other problems (such as the sciatic nerve in my left leg being damaged during one of my alcohol ethenol procedures) wasn't it bad anough to have this humongous tumor growing in my leg? Nope i guess not. Now due to the fact that I have no feeling in my leg due to nerve damage, it's very weak and so I have broken it 3 times in 3 different places. unfortunately for me although I do not have feeling in it to the touch, I could definately fel it when it broke. So needless to say, I haven't given up hope yet so I hope everybody else doesn't either but my advice is if you have a baby born w/ a hemangioma, start getting information on it ASAP because the quicker you catch it, the more easily it may be able to be removed. Mine just got way to big for anything to be done about it.

sweet pea 09-26-2007 02:03 AM

has anyone every thought about doing sclerotherapy to help? i can sympathize with you when you say its a pretty rare condition. i have Lymphangioma and have only met one other person with it like me.

Nicolefila 09-26-2007 06:01 AM

is sclerotherapy alcohol ethenol injections?

Lisa_99 09-26-2007 05:42 PM

Nicole --

There are newer procedures called

Endovascular Laser Venous Surgery.

The article below is written from Emory ( Atlanta GA area) where Dr ChamShuddin is the head of this dept

These are more articles and information

keep in mind -- different approaches work for different people.

The young lady I know who has had this procedure a few times is having great results!!

let me find more info from her mom and i will post it here :)

Addies' mom

Nicolefila 10-12-2007 01:59 AM

hey thank you so much for the information. I just had an angiogram today and they are suggesting different methods of treatment that are possible. I will print those articles out and read them over, and if it seems like an option, I will suggest it to my doc. I have skimmed over it and it seems like a great deal of very useful information. You're one of the first ones on here who has actually tried to help me so THANKS for that. I GREATLY appreciate it.
-Nicole in Tucson

Lisa_99 10-12-2007 04:06 AM

hi there!

well I am glad I could help!
Keep in touch! I am anxious to know how things work out for you!


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