H or VM

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When I was about 13 mo. old my left knee became twice as large as my right. My parents took me to a doctor and it was diagnosed as a hemagioma. They were told it wouldn't bother me or be painful for me so there was no reason to do anything about at that time. It wasn't until I was 5 years old that they decided to remove it. Then it returned. When I was 11 they removed the second one only to have another show up in the back of my knee. When I was 18 I had part of that one removed. So here I am 36 years old and I still get terrible pain in my knee. Sometimes so terrible I can hardly bend it let alone walk. Does any one have any suggestions on this or has anyone else had anything similiar to this?

hmm....

i have a VM on my left foot... w/ scattered ones up my leg and on different places. during high school cheerleading, there was a particular time when we were practicing a whole lot and i began to have pain on the back of my knee. it felt like VM pain, i don't know why.. but i checked every day to see if i had a VM coming in on the back of it. one of the veins back there was a little puffy and painful, but went away after a while.

anyway, i don't know if the pain was even related to my VM problem, and it's not a problem anymore... but i thought i'd write anyway because if it WAS related, i understand your pain. i couldn't even straighten my leg while walking... let alone do toe touches and good jumps at practice. the pain went away w/ time for me. i know this post probably isn't helpful in the slightest, but good luck w/ your pain.. you're in my prayers.

Thanks for replying. I go the Mayo Clinic tomorrow to meet with vascular doctors. Am really praying they do something. My MRI shows a huge mass behind my knee. No doctors around here will even touch it. I have been on crutches for almost 3 weeks now. It is getting to be very miserable.

Lana,

It is not a hemangioma. Hemangiomas never recur. I'm glad you'll be having an RMI. Getting the right diagnosis is essential with vascular malformations: each type of VM requires a different treatment.

Take good care.

Lise (arteriovenous malformation of the lip)

Just returned home from the Mayo. Next week I will start a series of treatments up there. They are trying to shrink it. And it is a VM. Funny how all these years I have been told that it was a hemangioma and now I find out that it is a VM. Right now I am not at risk of losing my leg but if I don't do anything that is a possibility. They are doing what they called sclerosing of the VM. Ever heard of it? Doesn't sound fun but neither is the pain of having it. It will take several treatments and then even possibly a surgery. Time will tell.

[nickbar]

Glad to hear you are getting treatment. Yes, I think many people live with the idea that they have a hemangioma...when if the doctor knew more about vascular lesions, they would realize that H. do not just sprout out at 18 months old...then come back.

Good luck with your treatment. Sorry you had to suffer for so many years.

Corinne

keep us posted on how it's going! good luck!

It has been a week now since my sclerosing. What an extremely painful procedure. Dr. was very aggresive with and tried to treat it all while I was under. He said it was about the size of a softball. That seems rather large. I am laid up for 3 weeks now with little walking. I go back to Mayo clinic June 15 for a recheck and to see where to go from here. Thanks for checking on me.

[Lisa_99]

Lana~ !
wishing you good healing !!!

who did you see at Mayo clinic??

Lisa

My vascular doctor is Dr. Shields. My vascular radiologist is Dr. McKusick. They are both excellent.
That is the most wonderful place and I feel like if anything can be done that they are the ones that can do it.