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  #1  
Old 10-11-2004, 12:04 PM
CindyJ
 
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Default Getting a Diagnosis

When I was 20 weeks pregnant, I had my first ultrasound. The doctor told my husband and me there was a mass on the back of my baby's head. We were told lots of scary things but on subsequent ultrasounds it was determined to be a hemangioma. I had ultrasounds each month until the 7th month of my pregnanct. The mass did not grow in utero and the doctors felt more ultrasounds were unnecessary. When he was born, the pediatricians examined him and could not find the lesion and told us is must have been absorbed.
However, 2 weeks later I noticed this swollen area on the back of my son, Colin's, head. It was not red, just the color of his skin and soft like a pillow.
After a vascular ultrasound, an MRI, meeting with a neurosurgeon and a pediatric surgeon we were told it is either a hemangioma, lymphangioma or a vascular malformation. There is a question as to whether the mass is communicating with the blood vessels within the skull. The pediatric surgeon wants to take a wait and see approach. How can you determine the course of action if the problem has not been diagnosed? Is this a common thing to happen??? Thanks, Cindy
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  #2  
Old 10-11-2004, 04:55 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re:Getting a Diagnosis

cindy where are you located? I would encourage you to contact a vascular birthmark specialist...one that has a lot of experience and can diagnosis this correctly. Proper diagnosis is critical....and waiting is not always the best option. Treatment can not go forwared until the correct diagnosis is made. I feel strongly that only a handful of doctors in the u.S. can diagnosis malformations correctly.

Please email me if you wish. I can give you more information on doctors.
Corinne
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  #3  
Old 10-11-2004, 08:45 PM
CindyJ
 
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Default Re:Getting a Diagnosis

I can't thank you enough for your reply Corinne. I emailed you my information.
Cindy
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