Vascular Birthmarks Foundation Forum - View Single Post - New to Lymphagioma-9month old baby girl-advice please?
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Old 03-17-2010, 03:01 PM
Lianne Mary Chase Lianne Mary Chase is offline
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Join Date: Mar 2010
Posts: 3
Default Lianne Chase

My son,Cody, had a LM removed from his right hand. It was the size and color of a plum and bleeding out by the time we finally found the VBF after years of local MD's telling us to be patient and see if it would just go away on it's own. In our case it was not life threatening thank God. I was at my wits end when I met Linda. I was referred to Martin Mihms in Boston who then referred me to the finest extremity doctor to have the LM removed surgically. In our case the LM was both Lymphatic and had veins entangled. Local doctors wanted nothing to do with surgery until he was older. Waiting 10 years was not an option we wanted to take, nor was trying smaller treatments in the meantime. We wanted it gone and for Cody to move on to a normal childhood.
He had his surgery in 01/2005 at the age of 6. He has had no regrowth, wears a baseball glove on his hand and plays all sports with out any problems.
What I learned from the experience was to be an advocate for my family. Ask for the best treatment and get it. The VBF has a wonderful network of doctors that work together for the best treatment for the patient. No egos, just the finest doctors in the field keeping up to date with new technologies in their field and sharing that information.
You mention that the LM is on your child's neck. You want the best in face and neck to take care of your child whether you opt for therapy or surgery. We live in Albany, NY. The best for us was Boston. It is definately worth the travel to California if that is where Dr. Levitintin and Dr. Linda suggest the best would be for you.
Now for the serious answers to the questions I can give you as a parent. There is always the chance that Cody's LM could grow back. LM's & VM's act as filters when my boys get infections and colds. They flare up. Cody's has not, because his was surgically removed. My other son, Casey, has small LM's on his neck that we had laser surgery for. They still enlarge when he gets sick. We are waiting to see what happens to them through his teen years before seeking to have them surgically removed or ablated. Best advice I can give is get to the best Dr. in the field. Both of my boys live very active lives. I will keep you in my prayers.
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