Joint Replacement Patient Forum
maliedeh, welcome to BoneSmart!
I checked out primary congenital lymphedema and have discovered it to be on the NORD (National Organisation list for Rare Diseases) which means that you are most unlikely to find a hip surgeon experienced in congenital lymphedema. I think the best kind of surgeon you could use is one who specialises in sarcoma cases.
Looks like a rather nasty condition. I wish you success in your enterprise. Do let us know how you get on.