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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=2594)

onetwothree 10-08-2007 07:41 AM

lymphangioma circumscriptum
 
Anyone else out there with this? What kinds of treatments have you tried? I've had laser treatments several times and am thinking about looking into saline sclerotherapy. Any comments would be useful. :)

sweet pea 10-09-2007 03:34 AM

Hello and welcome to the group. I have lymphangioma and have tried just about all the treatments they offer. I've had many surgeries, done laser, and tried sclerotherapy last week. The sclerotherapy didn't really work for me, but every one is different. I know others who have done it with fantastic results. Surgical excision(well partial) has worked the best for me.

Jodi T. 02-26-2008 05:11 PM

Lymphangioma Circumscriptum on my daughter
 
My daughter was just diagnosed with Lymphangioma Circumscriptum. She is 6. She has had it for as long as i can remember, but we have always just thought that it was a very small dry patch of skin that looked irritated sometimes. I guess her doctor never made a big deal out of it because she has always had very bumpy dry skin all over her back.

It has only been within the last year or so that it has started to really spread. It is on her lower back and moving around her waste fast. it cycles every week going from an eczema looking patch to clear blisters, to blood filled blisters, to black blisters. Then they dry out, peel off and then it starts all over again.

IS there anyone who also has it in this area? Will it continue to spread all over her body? And if it just grows back after surgery, should I really put my child through that or try other methods until she is old enough to decide for herself? Any help would be greatly appreciated.
Jodi

sweet pea 03-02-2008 07:29 PM

Mine is on my right hip area, so it is kind of close to that region. It can continue to spread, though I find it unlikely. It will most likely stay in that location. Unfortunately Lymphangioma Circumscriptum doesn't have too many options when it comes to treatment. You can try doing laser treatment, but there is a very high chance of regrowth. Surgery would be your best option for treatment in my opinion. I know that it has been just about the only treatment that has really worked for me. Good luck.

leighburnett 03-12-2008 11:28 PM

I have lympangioma circumscriptum on my left side, all the way from my shoulder blade to down near my belly button. When I was a small child (I'm 25 now), a doctor in Birmingham, Alabama did laser surgery on my side, but it didn't help - all it did was create LOTS of scar tissue. Around the time I was 10 or 11, my mom and grandmother found out about a doctor in Los Angeles, Dr. John Reinisch. We flew out that summer and I had surgery. He actually removed a huge portion of skin. Since then, I have been out to LA for several surgeries, and all have gone quite well. While the doctor has not been able to remove all of the lymphangioma circumscriptum, it is very minimal now. I would recommend contacting the doctor. If you want, I can give you his contact information. He is the best I know of when it comes to this.

Lynette1971 10-09-2012 11:03 AM

Lymphangioma circumscriptum
 
Hello, this is my first post. I am 42 years old and have lived with lymphangioma circumscriptum on my right side all my life. My first treatment started when I was about 5 years old. I've had it lazered several times, frozen, injected with liquid nitrogen (i think) and various other experiments. It was still quite rare when I was little and so surgeons were keen to try a number of different methods in the hope of a cure, but nothing worked! When I reached 18 I finally decided that the only option left was to have it 'cut out'. I found a fantastic surgeon who had the brilliant idea to put a balloon under my normal skin above my lymphangioma and stretch it so that when I finally had it 'cut out' the stretched skin went over the area so no skin graft was needed. It was the best decision I made and wished I had done it when I was younger as it had spread significantly by the time I was 18. I has come back in patches were it could not be fully removed but is manageable. On a happy note, I meet a wonderful man, got married and have two beautiful kids without lymphangioma xx

nmbf123 09-06-2014 01:33 PM

My Daughter Is 4 And Has It On Her Neck. And It Looks Like A Couple Spots Are.Starting On Her BacK. Did Any Treatment For Your Daughter Work Jodi? Did It Cintinue To Grow?


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