Originally Posted by Aolmstead
Is there a checklist we can refer to when finding a specialist to treat lyphantic malformations? What are the 'must have' experiences when finding one?
Through research, it looks like Dr. Levitin or Dr. Shiels would be my choice for my daughters (16 mth) LM macro on left neck, but our HMO does NOT allow 'out of network' and wants us to seek local medical resources FIRST.
We do have an interventional radiologist in Las Vegas (highly recommended by our ENT dr. who did the sclerotherapy on her neck) but needed to ask him 'specific' key questions with his approach on LM.
Can anyone tell me what I should be asking.....(other than the obvious ie. doctors experience, how many LM cases they've treated etc..)
I would definitely ask about experience(#1 thing to ask) and also maybe ask to see before and after pictures, if they have any. I heard you are moving to SF, and UCSF tends to have a good team that you can use. I was going to use them before I found the specialist I use, though I live in Southern California. Not sure if you want to travel that far. If you really want to use a certain specialist, you may end up having to repeal the insurance company. Many LM families have to do this to get the right treatment for their child or for themselves. I know I have a few times in the past. If you have facebook, we have a whole network of LM individuals and parents. You can try to network through them. I think there is a girl who is in the SF area with LM, and she can tell you who she uses. You can search for the LM group, Lymphatic Malformation Awareness Group.