New Here

Hello, I am new here. My name is Lori. I am 39 next month. I am a mother to three boys ages 9, 7, and 4. I never so much as heard as a malformation my entire life until this past January. I had a surprise pregnancy. This time I was carrying a girl and I felt "different" from the start. A friend noticed a bump on my face (lower left mandible between chin and ear). I began with a trip to an ENT. This followed with trips to a maxiofacial surgeon, radiologists (for ultrasounds), more ENT's, a vascular surgeon and then another vascular surgeon who specializes in vascular birthmarks of the head and neck. I live in North New Jersey and always thought the NYC area was loaded with some of the best doctors in the world. Well, as it turns out, most of those "best doctors" take NO in network health insurance. How lucky that I currently have no out of network. I went last week to Dr. Gregory Levitin. He feels I have a lymphatic malformation, possibly part venous. As it has been explained to me, my risks are nerve damage and the threat of this growing back, more than double. Yet, I've also been told if I do nothing at all, it can double anyway. As it stands right now, it's not SO obvious and I just cannot decide what to do. I am a member of many forums on Facebook (some of you may know me from there) and I fall apart into pieces when I see all of the mixed opinions about sclerotherapy vs. excision. I just want to get to a place where I truly believe what I'm choosing is the best option for me. I'm scaling the globe for someone who has a malformation similar to mine and better yet, who has overcome it. Even better if this person is a former patient of Dr. Levitin. Thanks for taking the time to read this.


Lori, We had an HMO Kaiser when we started this journey. We are near one of the best hospitals in the country but their vascular team were a bit perplexed with my sons facial avm, since it wasn't typical to ones they've seen. Because of their doubt they supported us in seeking opinions from doctors we chose. Because of their support, we were able to get our HMO to cover us out of state. We went to AR from MD. We accomplished this by asking them to send of a letter to give to the insurance for approval. It took a couple of months but it was approves at first try. If you want more info let me know. The most important thing first is to gain that support from the doctor. I hope you find good answers and start on the road of being avm free.

I agree with Connie! We had to get a referral from our pcp here in Scranton pa. It has taken around 3-4 months but we got approval and our PPO said that it would follow us where we needed to go. It seems like a ton of work but Arkansas was very supportative. Good luck!