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mncmlc 03-16-2011 12:24 AM

My life with hemangioma
When I was born the doctors told my parents that I had a birthmark on my right leg, it goes from the top all the way down to my foot. When I was 9 my knee started swelling up and I couldnt walk. My parents took me everywhere to figure out what was going on with my knee and after a couple of years a doctor finally diagnosed me with hemangioma and the reason for the swelling was because the veins that lies right under my skin, which they say is hemangioma, made 3 tumors in my knee. The doctors wouldnt take them out until i was 15, so until i could have them removed all i could do was elevate, ice pack, and tylenol. If was hard for me when i was young, i was very active in sports, but eventually my knee got the best of me had to quit it all. One tumor was so big that they took all of the muscle out with it...It was a hard road but im tough. the doctors said the hemangioma cant be removed and that i had a 10% chance that no more tumors will form..Well, its been 15 years and I have 4 more tumors, 3 of them dont really bother me, so the doctor said leave them alone, but just found another one and it is a problem, its behind my kneecap. I was going to get it removed last year, but I didnt have my 20% to put down. Now I'm having to go back for the past month it has hurt me everyday and every other day i will be stuck in the bed, dont know if it has gotten bigger or what is going on with it..I dont know what Im going to do with having to pay them, hopefully they will work with me...I could sit here and say my life was horrible because of it, but it wasnt..I love my life and I know God made me this way for reason and he knows I can handle it...The one thing that I do wonder about is, I havent seen anyone else with the type that I have..Thats the one thing that puzzles me

missy 03-16-2011 10:55 AM

Hi and welcome!

First of all, hemangioma refers to something that babies have. I suspect you have something similar to

So, when you are doing your research, you might get better answers if you look for others who have Arteriovenous Malformations rather than hemangioma. Doctors used to use the term hemangioma to describe them both, but there is a difference.

I know you've written to an expert, but I don't know where you are located, so I don't know what your insurance system is like.

And, welcome!!!


mncmlc 03-16-2011 12:52 PM

1 Attachment(s)
Thanks missy..I'm going to check them out...I posted an attachment and its of my leg....My leg looks like it has spider veins, but my docs said they are a different type of veins and that I have two sets in my leg, normal veins and then these,which they r right below the surface..and these veins that u can see r the ones that nest up and cause tumors..So, I dont know to think, been told that it was hemagioma all my life, but I cant find no info thats similar to me. I know u asked about where I live...I live in Nashville, Ga....

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