Vascular Birthmarks Foundation Forum - View Single Post - Flair up on the neck-so worried-LM macro
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Old 11-09-2010, 05:38 AM
Aolmstead Aolmstead is offline
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Join Date: Mar 2010
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Thank you sweetpea for your many responses....i really appreciate for those who reply or share their feedback...it means alot to get the support and learn from others experiences....miley is doing well but ultimately needs to get a procedure done to 'kill' the macro deep down her chest bone area....our recent MRI shows that it's massive (macro) and now there are multiple locations....I'm so upset that when they first identitfied it at 6months and had MRI at 13months old, doctors did not intervene. ....they said 'wait and observe'....till she got bigger....now miley is at 17months and her swelling around her neck was the biggest I've ever seen.....we did 2nd sclerotherapy w/doxycycline immediately..(thought wanted to take her to the Dr. shiels and Dr. Levintin but time was the essence and couldn't travel that far...besides our HMO would take forever to approve)....we used our local resources to treat her swelling ASAP....three weeks later she is recovering but waiting to consult with interventional radiologist....I'm soooooo looking forward to seeing what he has to say......I have all my notes and 'thanks' to your advice....I will ask him those questions.....
wish us luck......hope she will be in the right hands of an experienced physician...xoxo
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