Multi-focal Venous Malformation - Vascular Birthmarks Foundation Forum
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Old 05-13-2003, 08:30 PM
Gayle
 
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Default Multi-focal Venous Malformation

I am 48 Years old and was born with a venous malformation of the tongue and cheek. I was mis-diagnosed as a child and until 1988 had no real diagnosis, the doctors that I saw had no answers as to what my condition was. In 1988 I was misdiagnosed as having a hemangioma of the tongue and cheek. The plastic surgeon I saw did an angiogram on me. I was told that the technology needed to help me had not been developed yet. I never knew that there were others with my condition until recently. My malformation grew as I did, and seemed to be hormonally related. As a teenager there was only a small area on my tongue that was noticable, with each childbirth I noticed a marked increase in the size and extent of the abnormality. When I went through menapause and a then a hysterectomy, and was prescribed hormone replacement, I had a very fast growth reaction in my tongue and cheek. Little did I know that my throat was also being invaded by the malformation. There is total obstruction of one of my sinus cavities, and my tongue, now invaded all the way down to the back of my throat, has progressed into the vocal cords and larynx. Thanks to this web-site I have finally found Doctors to help with my situation. When I was born little was known of this condition, but with the recent technologies the children that are born today have a wonderful chance to get this taken care of before it becomes life threatening or disfiguring. I have an appointment to see Dr. Waner in July for my first consultation and I am very hopeful that his diagnosis for me will offer a future free of this venous malformation. Good Luck to all of you.
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