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-   -   please recommend a good doctor in bay area for microcystic lymphatic malformation (

juliajiang 05-03-2013 03:27 AM

please recommend a good doctor in bay area for microcystic lymphatic malformation
I am in bay area near Stanford. My son is diagnosed of having microcystic lymphatic malformation on his upper lip. His upper lip is prominent ever since he was in my belly. He is teething now and having lots of complications with the gum and upper lip. Lots of blisters and swelling. He cried so hard. My heart is breaking. He is only 13 month old. I always wanted to postpone the surgry but now I am seeking a good doctor in bay area who can treat him. Anyone has experience? Thank you very much!

missy 05-03-2013 10:26 PM

California? See if you can go see Dr. Frieden:

Dr. Ilona Frieden
University of California at San Francisco
Box 0316
San Francisco, CA 94115
Nurse: Louise Crotwell 415-353-7823
A pediatric dermatologist who treats all birthmarks with a special interest in vascular anomalies. Office includes a multidisciplinary vascular anomalies team: dermatology, plastics, interventional radiology, and ENT.

juliajiang 05-06-2013 09:58 PM

Thank you very much, Missy! I have thought UCSF is pretty good at it but after I read the comments from another thread, I feel UCSF is probably not very experienced with microcystic lymphatic malformation. It seems UCLA is well known. For the treatment, Mcirocystic LM is so different. I definitely need to do more search for doctors specialized in it.

JMR00 05-08-2013 05:52 PM

Are you part of a Facebook group for LM? They are pretty active and people have lots of good advice, they should be able to recommend someone. Search for 'Lymphatic Malformation Awareness Group'. There is another 'secret' group which does not show up in a search - if you post on the one above someone will be able to add to you to it.

riham 12-02-2014 10:38 AM

It is important to evaluate whether the lymphatic malformation is microcystic or macrocystic or both. Rarely, in patients with extensive lymphatic malformations, abnormalities of blood clotting can be seen on blood testing and some may require treatment for this.

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