Parkes weber? AVM on buttock and leg
I am the mother of an three years old fantastic girl from Malmoe, Sweden. When she was born she had an big red spot on her right buttock and the dr did tell us that it would be gone of itself. As she was four weeks the tissue under the spot started growing and today the buttock is three times biger than the left buttock. It is warm (hot) we can se that it is growing down to the knee (just the tissue, not the spot). Her right leg is about 1 cm longer than the other, and her heart has been growing. Besides this she is a very vitaly and happy girl and she has no pain or bleeding yet.
She has done MR, ultrasound doppler and angiography: She has an big ball of fistulas with arterys and vessels. An high flow AVM.
The swedish dr says that they never has seen something like this before, and we have no diagnose. But after reeding studies and here on birthmark.org I understand this can be a Parkes Weber syndrome.
Because of hear hearts growing we have to start any treatment. They discuss to treat wit embolotheraphy with glue or sclerotherapy with alcohol. They says she will have 10 sclerotheraphys in the beginning, one every other month... I know the risks about the treatment but I think we have no choice.
I has a lot of questions about this and wonder if there is someone who has experience of something like this?
If we decides to treat with sclerotheraphy, dr Yakes from Colorado is comming to Malmoe in may and treat her. Maybe someone has expeirence of him?
I would be very glad for answer.
Best wishes to you all.
Magdalena Cruce, mother of Smilla