Looking for answers (Lymphangioma) - Vascular Birthmarks Foundation Forum
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Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Lymphatic Malformations (also known as cystic hygroma and lymphangioma)

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Old 11-05-2009, 09:56 PM
Sequenzia Sequenzia is offline
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Join Date: Nov 2009
Posts: 4
Default Looking for answers (Lymphangioma)

Hi All,

I am very glad I found this form. I have already emailed this same question to Dr Edmunds who is listed as an expert on Lymphatic Malformations but I wanted to put it out here on this form to see if I can get some feedback.

2 weeks ago a pretty large mass showed up in the temporal area of my daughter's head/face. My daughter Scarlett is 27 months old and appears perfectly healthy.

We immediately brought her into to see her pediatrician and he ordered a CT Scan. All the CT scan really showed was that her brain is fine and she has a mass in her left temporal area. So the pediatrician recommended we speak to a pediatric neurologist which we immediately did. The neurologist looked at the CT scans and recommended that we speak to a plastic surgeon because of the location of the mass. We met with a plastic surgeon the next day and he ordered a MRI. Today we got the MRI results and met with the plastic surgeon. The MRI report stated that it appears to be completely benign and the closest the radiologist and the plastic surgeon can come to a diagnosis is Lymphangioma but they cannot give us a hard diagnosis. At this point the plastic surgeon wants us to bring her back in 4 weeks to see if it changes. He also said if we want we can see a pediatric oncologist just to be certain it is benign. We have already made a appointment with he oncologist for Tuesday.

My question to you is how can we get a concrete diagnosis? I really am not comfortable waiting 4 weeks to just see if it grows when they cannot tell us for sure what it is. As parents what should we do? Is there a better specialist we should be seeing other than a plastic surgeon? Should they be able to give us a firm diagnosis based on just the MRI?

Any help that you could give us would be greatly appreciated. We will do whatever we need to make sure she is healthy we just need to know what we should be doing.

Thanks in advance for any help.

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