Hello all, my name is stefi
and I haven't been on here in a while. I am very
excited to see that the boards are starting to be
more active. I have something very similar to AVM.
I have CVM which means that the malformation
is in the capillaries instead of the arteries. I was told
until I was eighteen years old that it was hemangioma.
I took it upon myself to research and go to Boston's
Children's hospital. The problem is, The CVM is on
my entire right leg all the way up to my waist. Because to the CVM, my right leg was growing much faster than
the left so I had surgery when I was a child
to help slow it down. It worked thankfully, because I would have had one lef a foot longer than the other.
That is all of the surgery that I have had and I am
a little overwelmed with things to research what can be done. I am in a lot of pain especially when it is cold and
I just can't take it anymore. I don't want to take tylonol all my life or wear stockings that don't work. I don't know if anything can be done for me because the birthmark is so large. Doctors are overwelmed with it and tell me there is nothing they can do. Someday I will get it fixed though. I am 21 years old with a 14 month old baby and going to nursing school. I hope someday I will be able to sit down and get this done and talk to the right people. I still have a lot of hope. I am just a little impatient. :