Right There with Ya - Northbrook, IL
- updated 5 months ago
I am 20 years old and also have a bathing trunk...
- 21 Jul 2013
- 27 days post
I am 20 years old and also have a bathing trunk giant congenital nevus like yours. I am currently going through the process of skin expansion to remove the nevus. How it works is that they put large silicon skin expanders under the healthy skin. Over the course of 3 months, my mom and I inject saline solution into the expanders to fill them and, consequently, stretch the skin. It hasn't been easy. My skin doesn't stretch well so I have some stretch marks from the procedure. It is also a long process. I had one set of expansion surgeries done last fall and I am in the middle of expanding again right now. I will have the expanders taken out in the middle of September. I am going to have to have a few more surgeries before the majority of my nevus is gone. Not all of a bathing trunk nevus can be removed because of it's location, but most of it can as long as you have enough healthy skin surrounding it. There are scars, but heck, they are better than the nevus. Other cons: I have no feeling in the skin where the expanders have been. Also, it is really inconvenient to put life on hold for three months at a time to have bulky expanders in. For example, since I had surgery a month ago, I have gone from having a 26 inch waist to a 38 inch waist. I went from a size 4 dress to a size 18 dress in month!! Not really something I like to brag about. It really might be worth it for you to check it out though. If you are anything like me, I couldn't handle life with the birthmark. I'll take the cons, even though they suck. I travel across the country to go to Dr. Bruce Bauer in Chicago. He is the leading expert in the world for our type of nevus and the skin expanders that he uses. He usually works with little babies though. I am the oldest patient with a bathing trunk nevus that he has worked on. That being said, he is absolutely wonderful. I wouldn't even consider anyone else. EVER. The cost depends mostly on your insurance company, but mine has covered 80% of the costs. After what insurance covered, each surgery has cost me about $3,000. Which tells you that insurance has covered a TON! The cost of traveling to and from Chicago is also kind of pricey though. I hope this helps you. There aren't very many of us out there who have this condition so we need to help each other out. I wish you all of the luck in the world. I am probably one of the few people in the world who know exactly what you are going through. :) I'll follow this thread in case you have any more questions.
I forgot to add...
- 22 Jul 2013
- 28 days post
Also, just so you don't waste your money... using lasers on this type of nevus doesn't work. The nevus will just come back, sometimes even darker. It is rooted too deep. Also, it is unknown whether the use of lasers on this type of nevus increases the risk of the development of cancer. There have been plenty of documented cases of this happening. This is a deep rooted mole, not a surface pigmented birthmark (which would respond much better to laser treatment). Save yourself the money for something that actually works.
This is NOT an infection
- 22 Jul 2013
- 28 days post
I also want to add that you aren't "infected" with this like you would be by some microbial disease. For a long time, we had no idea what caused giant congenital nevi. Recently, researchers have found that a body protein called the hepatocyte growth factor/scatter factor (aka HGF/SF) is responsible for these giant nevi and the satellite nevi that often accompany them . You can check out nevusnetwork.org for more information about it this new research.