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-   -   large avm on back (http://birthmark.org/board/showthread.php?t=1038)

5filk 11-11-2004 10:47 PM

large avm on back
 
My daughter was born with a dark area on her back, that I noticed as soon as she was held up. At first I was told it was nothing and then a hemangioma. She say an M.D. before discharge the next a.m., at my request and h. was confirmed. This was 1990, before the internet, unfortunately! Over the years continued to be told it's a h., by multiple docs, even had an MRI in '97 which confirmed it and said it was subcutaneous, no spinal involvement. Oct. 9, '04, we saw Dr. Rabinowitz, who is wonderful, who promptly told us it is an avm. I was an ICU RN, married to an orthopaedist, so I thought we were fairly savvy, medically. I thought wrong. And as a nurse, my experience with avm's (of course all in the icu) has not been great. This lesion measures about 15cm X 7cm, no small lesion. We have just sent pictures and mri's to Dr. Berenstein in NYC. The new mri shows that the avm is fed by several large arteries off the aorta, bilaterally, as well as several lateral arteries and the venous drainage consists of several enlarged veins, also bilaterally. The mass has enlarged over the last 2 yrs, though I think each of us thought, oh it can't be, it's a h., they don't grow. But, she's going through puberty and that is probably what has stimulated it. She's not finished yet, so perhaps that's a good thing. Beyond beating myself up and then moving on to the radiologist who read the mri in 1997...Has anyone had any similar experiences? Are they able to remove the mass after the embolization of the vessels? Are the vessels able to be all done at once? And does it depend on the size of the lesion? I haven't sent anything to Waner, but I mentioned consulting with him to Berenstein. He called me right after he spoke with Dr. Rabinowitz and did not feel it was as emergent of a situation as Dr. Rabinowitz did, but we'll see what he decides after he sees the films, pics, and history. Any information that can be offered to me would be greatly appreciated. Thank you and best of luck to everyone else.
Kate


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