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-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   Lymphangioma of the leg (http://birthmark.org/board/showthread.php?t=3807)

crctmom 04-24-2010 08:37 PM

Lymphangioma of the leg
 
I just found this site and am excited for the info I've read but am wondering if there's anyone out there with a child that has Lymphangioma in the leg? My son was born with a lump in his right calf which was surgically removed and then diagnosed as Lymphangioma. He is now 5 1/2 years old and a new lump and bruising has appeared in the same location. The lump is larger this time.
I'm trying to be prepared for our visit to the oncologist next week. I believe it was classified as macro as it was all inside and cavernous, I believe. An orthorpedic surgeon did his 1st surgery but I don't believe had any experience with Lymphangioma but we didn't know the dx until after surgery.
From what I'm reading, sclerotherapy is the treatment to go with but then I'm finding it eventually leads to another surgery perhaps.
Does anyone else have experience with the extremities? I'd love to gather as much info as possible to make informed decisions once oncology gives their suggestions.
Thank you!
Debbie

missy 04-24-2010 11:24 PM

Right off the top of my head, I can't think of anyone who has dealt with Lymphangioma in that location. I can think of two parents who had children with lymphangioma in the neck.

I'll ask around, though.

Also, hi and welcome!

If sclerotherapy is the suggested treatment and might lead to another surgery anyway, will you push for surgery rather than sclerotherapy? I'm curious to know why you didn't return to the orthopeidc surgeon this time as well (just curious, not questioning your decision!!).

Missy

crctmom 04-25-2010 12:26 AM

Missy,

Thanks for your reply. The only reason I'm thinking that sclerotherapy will be the recommendation is because of the internet research that I've done. The research also tells me what I didn't know 5 years ago...surgery is almost never successful in getting all of the Lymphangioma. I'm assuming that's why we have a recurrence?! Plus, the orthopedic surgeon didn't have any experience in the area of Lymphangioma so I'm thinking it would be better to find someone that does if we had to go that route. But I keep digging and finding sclerotherapy to be the better option. I did do the "ask the expert" on here before I read about so many recommending Dr. Levitin so I emailed Dr. Edmonds and gave him my son's history...he recommended sclerotherapy also.
I have no idea if there's anyone in my area that does this...I'm hoping the oncologists will know on Wed. I'm in southwest Florida, in Fort Myers.

Thank you!
Debbie

missy 04-25-2010 01:48 PM

Most of the listings we have for florida... well, the closest for you would be Miami, I think, and I'm not sure if those docs deal with Lymphangioma

http://birthmark.org/node/47#florida

Wasn't questioning your judgement at all, just not familiar as I ought to be with this particular treatment. I do know that if you don't get every CELL of the lesion, it does have a good chance of coming back.

Let us know how things go with oncology this week!

Missy

missy 04-25-2010 01:59 PM

Write to Dr. Linda and see if she can help you find someone qualified to answer your questions:

http://birthmark.org/node/46

She will get back in touch and give the best advice for you!

Missy

crctmom 04-28-2010 07:52 PM

Thanks so much!!!

Miss Mummy 05-02-2010 01:41 AM

HI I am from Australia and my little girl has a cystic hygroma (lymphatic Malformation) in her leg too hers is in her pelvis thigh and vagina it is a huge mass that is purely macrocystic and she has receieved 4 lots of sclerotherapy which have not worked. We are now undergoing more tests as she has become incontinent and has lymphodema back again :( As far as I was aware we are the only ones with it in the lower limbs :) please to meet you

sweet pea 05-28-2010 07:26 PM

Hi. I have LM of the right hip/thigh area myself. Though mine is microcystic. I would definitely recommend finding a doctor with experience, as that is a big part of getting the right treatment. Many pediatric surgeons have experience with the condition. I'd be a little hesitant to go with an oncologist, but that's just my opinion. If you can do sclerotherapy, I definitely recommend it! Surgery is never fun and no matter what, it will be difficult to fully remove the lymphatic malformation. I'm 20 and still have some still there. Sadly, it's pretty much a life long thing, but he won't have constant surgeries. It's a lot in the beginning stages, but then it slows down considerably. If you have any questions or anything, don't hesitate to ask. good luck!

curtisjan 07-09-2010 06:38 PM

Hi -
I also have a lymphangioma of the right hip and thigh. I am 42 and even though Drs. said that I would never have children, my children are 6, almost 4, and 22 months. I had surgery to remove the tumor when I was 8 months (they removed 10lbs) and then again when I was 22 years old. Both times the tumor grew back within 3-6 months. When I was 22 they tried sclerotherapy, but it did nothing that I could tell. Blader problems were fixed when I was 3 or 4 : the dr went in and stretched my blader. I still have some incontenance. The tumor, though uncomfortable and ugly, causes no major problems. I get tired easily if I walk or stand too much. And it realy swells when I am pregnant or drink too much caffeene.
Hope this helps someone.

krmc 03-23-2011 10:13 PM

Debbie,
My son had a lymphangioma removed from the inside of his left calf when he was 5mos. old. He just turned six and we have discovered a new lump in the same area it is also very tender to touch. He had an ultrasound yesterday (and a mass was confirmed) and will most likely need an MRI. We are meeting with the surgeon next week. I am curious as to how you made out with you son.
Thanks
Alyson


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