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-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   My daughter's orbital/face LM (http://birthmark.org/board/showthread.php?t=3953)

dmcgrew 07-09-2010 02:26 AM

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,
Denna
Mom to Jenna

missy 07-09-2010 02:03 PM

Hi and welcome!

I have no advice to give on this, really, except to say that I know of other people who have developed more lesions not connected with their first, so that is not terribly uncommon. I will also say that you are in the BEST hands in the world as far as care goes.

If others do not come around and post (the LM forum is slower than others) then I will get in touch with someone who can come and talk to you.

Missy

dmcgrew 07-09-2010 03:01 PM

Thank you, Missy.

Aolmstead 07-14-2010 03:28 AM

hello-wanted to give you my prayers
 
Hello,

I'm a mother of a 13month baby girl with LM on her left neck. (you can read about our situation on various postings under Aolmstead). I totally understand your concerns for your little girl. My husband and I are also was very surprised to see our daughter at 6months develop a swelling on her left neck. We did not expect this to be genetic/dormant when she was born. Anyhow, I periodically get on this site to read about other postings from parents. My daughter will have another MRI next week to see how the cyst has developed in her chest and left lung area. Then another MRI the following week. Depending on her results, would we drive to UCLA Ronald Reagan and see a radiologist to perhaps perform a percutaneious embolization procedure. In the meantime, we are just observing and watching our daughter closely and simply can not do anything at the moment. Poor thing; she doesn't even realize it's in her neck. Anyhow, I do wish you all the best and if anything helps...know that you are NOT alone and I will be praying for you family.....your little girl sounds like she is a fighter!! hang in there and God Bless....


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