My daughter's orbital/face LM
Hello, I'm hoping for some feedback. My daughter, Jenna, was diagnosed with orbital LM in her right eye and face; the swelling in her eye socket started in 2006 when she was three months old. The LM was surgically resected two times - the last by Dr. Waner and Dr. Fay in November, 2007. She also had a steroid injection into the site in December 2007. Since that time, she has not had any major swelling, although the site has always been swollen a little.
Jenna is now a very verbal three year old and will turn four next month. Over the last few months, the swelling has been more pronounced, and she has been complaining of pain/burning in the site. Tonight, we found a new site on the inside of her lip which appears to be another LM, along with a place on her right thigh which looks like "lymphangioma circumscriptum".
My question is, how common is it for children with LM's to have several sites? What is her prognosis? I've contacted Dr. Shiels for a consult and we are considering traveling to Ohio soon (we live in Louisiana). Dr. Waner does think that we should consult with Dr. Shiels to determine if his less invasive, nonsurgical approach might work for Jenna. The LM in her eye socket is very difficult as it wraps around her optical nerve. We've been told that more surgeries in that spot increase the chance of scar tissue impeding the movement of her eye.
On an emotional note, my husband and I are feeling very sad to have discovered what appear to be new lesions in these locations which are not connected to the origional site. I'm sure that many of you feel emotionally overwhelmed at times too.
Any comments are greatly appreciated. Also, for those of you who are older, can you please tell me how painful is your LM? I can hardly stand the thought of my sweet daughter in chronic pain.
God bless all of you,
Mom to Jenna