What is Microcystic Lymphatic Vascular Malformation - 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 01-04-2007, 11:39 PM
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Thumbs up What is Microcystic Lymphatic Vascular Malformation

I know someone whose son has Microcystic Lymph. Vascul. Malformation. He has what appears to be red marks on his back around the shoulder area and has to wear what looks like to me a wet suit evey day. This seems to be painful to me. I would like to know what causes this disease since I can not find anything on the web. Thanks for any help possible. I also know that the insurance that this family has(we has the same since my husband works with the father and uncle) will not help pay for out of town doctor visits.
Thanks to everyone in advance. Feel free to email me at aprilone95@excite.com.
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Old 08-07-2008, 04:33 PM
linda6969 linda6969 is offline
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Thumbs down sucks

It's a birth defect that sucks, is what it is. They say it begins somewhere around the sixth week gestation. It's a genetic error in the lymph venous system.
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Old 08-07-2008, 04:34 PM
linda6969 linda6969 is offline
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My daughter has it, I'm battling it now.
never goes away neither.
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Old 09-03-2008, 12:59 AM
sweet pea sweet pea is offline
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Join Date: Jul 2006
Location: Southern California
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Micro LMs are small extra lymphatic vessels. Since it is microcystic it is harder to treat since it is almost impossible to see with the naked eye. I have micro LM myself, in the pelvic region. If the insurance won't cover it you can ALWAYS try to appeal the decision. My family had to do this quite a few times, as they wouldn't cover my treatments from doctors out of network. We'd write a letter stating why we needed to see the other doctor and have always gotten it covered in the end. Feel free to ask me any questions if you have any others.
what makes you different, makes you beautiful
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Old 04-09-2009, 12:58 AM
Joshua'smom Joshua'smom is offline
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Join Date: Aug 2006
Location: AZ
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My son has microcystic lymphangioma. It is basically tumors of the lymph vessels with teeny tiny blisters. My son's is located in his neck, cheek, tongue, roof of his mouth, and his parotid gland. The cysts form because the lymph vessels just end. They don't dump into anything except the surrounding tissues. So the lymph fluid collects. Our Dr., a Lymphangioma specialist says that the most dangerous thing is for the cysts to get infected. The infection can get into the bloodstream and cause serious problems, even death. The lymphangioma will usually increase in size with a viral infection because the lymph system helps to fight off infections and produce more lymph fluid. For my son we have to also worry about the part in his neck closing off his airway. Antibiotics and steroids are the basic treatment. I had one ENT doctor try to prescribe an Epi pen, but that would not do anything to help open his airway. That is designed to counteract histamines. He also has to have the part in his mouth lasered periodically because the cysts start to hurt him and they get large enough to interfere with talking. Plus we have to worry about them bursting and then getting infected. He is getting ready to have his 4th laser surgery. He is averaging a surgery every 2 years, but the doctor said that it may have to be done every 6 months. The need for surgery is something that can not be predicted.
I hope this info helps you out. We have been dealing with this for 10 years. We had to go to AZ for 2 years with the Army and I had to educate the doctors up there.(Which is something you may eventually have to do) I knew when we left that there wasn't a specialist in the state.
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