I would definitely agree with Missy in terms of sending an email/photo to Dr. Levitin explaining what you have posted here. That would probably be a good start.
Also, where are you located? We might be able to help you find other specialists in your area that might be of some help. I would probably try to find a different doctor than the ones you have already seen, if possible. If you just can't, I would go back to one of the originals and tell them about your questions and concerns and what you have found out in researching it a bit more and see what they say??? It's ok to be persistent. It is safe to say it is not a hemangioma or portwine stain. Although, I have heard that some doctors do refer to all vascular lesions as "hemangiomas" even though that they are not truly hemangiomas. So I'm wondering if that might be the case here?? Nevertheless, I think it is important to get a correct diagnosis so that you can find out if treatment is necessary and so you will be able to have peace of mind (of knowing if it is a vascular lesion or something else.) I think it is hard not to worry, when you have lots of questions remaining.
Good luck and keep us posted!
VBF Hemangioma Forum Moderator