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-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   Lymphangioma Circumscriptum (http://birthmark.org/board/showthread.php?t=6314)

e.shadows 04-02-2013 03:18 AM

Lymphangioma Circumscriptum
 
I know it's best to directly contact the doctors for specific questions about conditions, but I just wanted to ask if there's anyone out there who's gone through any of the various treatments for Lymphangioma Circumscriptum. I understand this condition is very rare, but it's what I have.

As I mentioned in the other post I have, I'm beginning to seriously research this condition and plan to soon seek treatment, but I just wanted to see if anyone had any first hand experience with any treatments. I'd like to avoid sugery if possible, but I will if it looks like it will be the option with the highest likelihood of success.

Thanks.

missy 04-02-2013 12:10 PM

Hi and welcome again!

I don't have advice for you, just wanted to say hi. Do get in touch with one of the experts, if you haven't already. Http://birthmark.org/experts.php

Missy

leah_c 04-11-2013 01:49 AM

I'm 26 and I have Lymphangioma Circumscriptum. I've had laser surgeries since I was young and I've found that they are the best option. I've had about 20-25 surgeries so far and I'm actually having another one tomorrow. I don't get them all the time, just when it acts up and starts to spread.

Mine are on the abdomen area, right side and have been spreading slowly out in all directions unfortunately. My area is too large for removal (cutting it out), but if your area is small enough and not in a dangerous area, it could be an option for you. I did try Sclerotherapy a couple times, but it seemed to not work and I didn't really like needles repeatedly being stuck in my stomach.

My advice is to do some research, check with the website that Missy posted, and also look into doctors that specialize in dermatology, especially in the university level. I'm not sure where you live, but I had great doctors at the University of Minnesota who helped me with both laser and Sclerotherapy surgeries.

Hope this helps. Good luck! :)

e.shadows 04-25-2013 03:03 AM

Leah, thank you for sharing your experience. I am 32 and my condition affects my abdomen as well, but on the lower left side. As I'm sure you can appreciate, this condition makes some aspects of life difficult and akward, but it takes a lot of courage to even come forward on a forum and share your story, so thank you again so much.

From the research I've done, I think that the real answer is that different treatments can have different effects for different individuals. But something has to be tried, else nothing is gained/learned.

I'm very busy with my work and personal life, but I've made it a goal of mine to make an appointment with a physician and see what the options are by the end of the year. If I do decide on a course of treatment, I will provide updates here regarding the type and success.

And I just want everyone to know that while I do have this condition, I am happily married and have an amazing life. I hope anyone who reads this and has this or a similar affliction understands that while it might seem like you are alone and/or you might feel like people would not accept you for having this condition, that this simply isn't the case. This condition is not your identity; it's just a small part of your life. You life doesn't have to be any less than that of anyone else's. Please know that... it is the truth.

Thanks again.

- Eric


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