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-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   Suggestions and Insight (http://birthmark.org/board/showthread.php?t=6248)

Mommy Of 3 Boys 01-26-2013 07:05 PM

Suggestions and Insight
 
Hey to all,

I have a 2 1/2 year old that was born with both macrocysts and microcysts around his right ear and neck. Recently, they have grown causing some minor issues. We are being told that he will have to undergo sclerotherapy or surgery. Can anyone give me the pros and cons for both if you have experienced either for your little one? My husband and I are thinking surgery so our son only has to go through one procedure and can be a done deal for a while. Has anyone opted for the surgery? If so, how did your little one deal with a long, extensive surgery like this? Thank you all.

yu 02-03-2013 03:53 PM

Did it
 
Hello,
my girl was born with LM, and yes I almost did the surgery. Thank god I didn't. the problem with the surgery that is not 100 present success. I found a great doctor that recommend me to do the injections. I was in snider hospital in long island. the name of the doctor is

Stephen Elliot Dolgin, MD
CCMC - Dept. of Pediatrics/Pediatric Surgery
269-01 76th Avenue
New Hyde Park, NY 11040
Office Phone:(718) 470-3636

He recommend me to try the injection, did it twice with radiology department, when she was 3 and 5 months. thank god nothing left. today she is 3.

Good luck:)

Ballroomann 03-20-2013 04:43 AM

Surgery route
 
This reply is probably too late to help you make your decision, but I would love to hear what direction you went and how you feel it is going.
I am the mother of 4 boys :) my youngest was just diagnosed with LM in his neck. We did surgery, not because we chose it over schlerotherapy, but because he was misdiagnosed with a branchial cleft cycst. It was only after the surgery was performed that it was again misdiagnosed as an AVM. Just last week we went to an Interventional Radiologist who confirmed my suspicions that it was lymphatic malformation, macrocystic. The IR was really impressed with how my son looked, especially after having surgery by a dr who didn't know what he was removing. We did an ultrasound and found 3 more small lymph cysts that we will have to keep an eye on but if they do expand like the first one I will probably opt for schlerotherapy. My son did great with surgery (no downtime at all!), but from everything I've read it is rare that surgery produces such great results that it is gone with just 1 procedure. And I'd never let anyone but a specialist in this area touch my child's neck again, as our IR told us most dr. just make a mess of things and it is 10x worse after surgery. It has only been 2 1/2 months since my sons surgery, so I am keeping a close eye on him, but so far so good--I consider ourselves very lucky!


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