Vascular Birthmarks Foundation Forum - View Single Post - Question about progression of CMTC
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Old 06-02-2011, 01:01 AM
abatie abatie is offline
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Join Date: Oct 2009
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I know that from what I have learned and experienced with CMTC (23 months) that it is usually clearly present at birth and may or may not lighten. In Becca's case her leg is sometimes lighter but there is always some molting clearly present. Also I wouldn't say hers has improved from birth. Also, I do know that many doctors will refer to CMTC as a vascular malformation. From what I have read about Dr. Waner he is very knowledgeable and would a great reference even though CMTC isn't his specialty. From our experience it isn't so much about CMTC but managing the associated problems that may or may not be related. The doctors will tell you that they can't really tell you that the related problems are from CMTC because it is so rare. We are facing serious heart issues with our baby but have found nobody else that has had this experience yet our doctors do believe it is probably be related. I will tell you that we have been through a lot and I am more than willing to be a reference point if you need advice. I will try to check back soon. We leave for Mayo Clinic on Monday to see Becca's cardiologist for her recheck. She is have some significant complications so it will be a stressful visit so we would appreciate all our friends on thus board to keep her in their thoughts next week. Then in another three weeks I will be leaving for brain surgery so I might not be around a lot in July.
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