lymphangioma in the pelvic

sarfati · #1 12-24-2008, 11:22 AM

Hello. My 2 years old daughther was diagnosed with lymphangioma in the pelvic and right thigh and buttock.
Our doctor wants to do sclerectomy.
We are looking for a specialist for that treatment and for someone who makes for us the best diagnosis.
We live in Israel but we'll go anywhere for her.
(sorry for the spelling...)
Thank you very much for any response.

momof3mn · #2 01-06-2009, 07:13 PM

Hello...I am no expert in this, we are trying to figure out what type of vascular malformation our daughter has near her spine and butt and bladder. Our doctor at the University of Minnesota said that if he were to go anywhere, he would go to Boston Children's Hospital. Maybe find their website and contact them. Or, see if anyone else knows too, just thought I would give you one place! I will pray that you find who you need to find...

sarfati · #3 01-07-2009, 04:01 PM

How old is your daughter ?
My daughter was diagnosed when she was 8 months old. One day we saw swelling in her right buttock. We did MRI and they saw a lot of cysts inside her pelvic. Since then the situation was worsen, she has pain and big swelling in her low back.
We asked some doctors here and got few opinions. We are really confused.
Some sugested to do a biopsy, some want to take all out in a big surgery and some want to do injections.
Because all this different opinions we are looking for the best center we can count on.

sweet pea · #4 01-10-2009, 07:58 PM

Boston Children's Hospital is a great place to go. They have a wonderful vascular anomalies clinic and team that you can stay with long term for all follow up care throughout the years. I would have liked to go there myself, but my family could not afford it. If you can skip the surgery and do sclerotherapy(injections) instead, I would definitely recommend trying that first. I also think having a biopsy done is a good idea just to make sure they know exactly what they are dealing with.

jmeserve · #5 02-06-2009, 06:13 PM

I would highly recommend Children's Hospital in Boston. We go there, my son has a LM in his neck. They are wonderful! The Vascular Anomolies Clinic is where you start.