Vascular Birthmarks Foundation Forum - View Single Post - Multi-focal Venous Malformation
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Old 11-07-2003, 02:10 PM
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Default Re:Multi-focal Venous Malformation

Dr. Waner said that the laser would shrink but not get rid of the VM. I will always have it and there is a possibility that it can start getting larger again, but if it does he can manage it with laser treatment. He has told me that he thought it would never need further treatment after his initial treatments. Mine is noticible from outside of my face by a slight bulging along and under my jawline, and also by the abnormal vein pattern showing on my face. Most of my condition is inside my mouth, where it can be hidden from public scrutiny. My tongue has one large almost "vericose vein -looking " almost covering the entire tongue, on top and underneath. My inside cheek has areas dotted with the same blue to purple colored lesions that range from the size of a quarter to pea size. Since mine is considered multi-focal it would be hard to remove all of the areas, which is what would have to be done in order to completely get rid of it. If it had been confined to one area they could have removed it. I think that you need to get a correct diagnosis before you let anyone do anything to you. I am so glad that you are taking an aggressive approach to your own medical health, after all it is your body. I bought the book that is on this website and have gained a lot of knowledge from it. There are pictures of children with lesions that include deep and superficial components, which is what you have described to me. Some were treated with sclerotherapy for their "slow-flow" malformations. I don't want you to get confused about treatments until you are correctly diagnosed, don't settle for a diagnosis you feel is wrong. When I finally took control of my diagnosis is when I finally found help. Most Doctors aren't very well informed on the latest technologies used to treat these anomolies. There doesn't even seem to be a standardized way to even classify these lesions, so it is very important that you get a correct diagnosis. The treatment of a VM is different from that of a hemangioma. A correct diagnosis should be your first step. There was a fire-fighter in Little Rock for treatment when I was there with the same thing you described. I saw him but didn't talk to him. Now I wish I had, I could let you know what he was having done. Keep your chin up, there is a solution to your problem without scarring. The social stigma is enormous with this because you do feel so alone, just know that you are not alone. You don't see people with this because they don't go out. It is too embarrassing. But there a lot of people out there like us who are still searching for a cure. Good luck!
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