Lymphangioma of the leg - Page 2 - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Lymphatic Malformations (also known as cystic hygroma and lymphangioma)

Reply
 
Thread Tools Display Modes
  #11  
Old 04-13-2011, 05:17 AM
jmills jmills is offline
Junior Member
 
Join Date: Feb 2010
Posts: 10
Default Dr. William Shiels

Quote:
Originally Posted by crctmom View Post
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
My daughter has an LM on her neck and is being treated by Dr. Shiels in Ohio.
I am pretty sure he treats and has experience with extremeties. He may be able to help. My research that I did a year ago convinced me that Dr. Shiels has the highest documented success rate that is peer reviewed, of anyone else I could find and LM's are one of his specialties. Click this link to read about his work, http://174.120.2.17/pdf/LymphaticMal...nTreatment.pdf
Reply With Quote
  #12  
Old 04-13-2011, 01:38 PM
sarfati sarfati is offline
Junior Member
 
Join Date: Dec 2008
Posts: 4
Default i have a daughter with lymphangioma in her pelvic

My 4 years old daughter was diagnosed with lymphangioma in the pelvic and right thigh and buttock.when she was 8 months old.she had a big surgery when she was 2 years old.
we had quit 2 years and 2 week ago suddenly she felt pain and the area became big, red and hot. Our doctor open the area and put drain in her buttock. now she wants to do sclerectomy.

we don't know how it will affect her. is it hard treatment?
how she will fill after?
here they inject alcohol. do anyone has experience with it?
Reply With Quote
  #13  
Old 05-12-2011, 01:27 AM
sweet pea sweet pea is offline
Senior Member
 
Join Date: Jul 2006
Location: Southern California
Posts: 111
Default

Quote:
Originally Posted by sarfati View Post
My 4 years old daughter was diagnosed with lymphangioma in the pelvic and right thigh and buttock.when she was 8 months old.she had a big surgery when she was 2 years old.
we had quit 2 years and 2 week ago suddenly she felt pain and the area became big, red and hot. Our doctor open the area and put drain in her buttock. now she wants to do sclerectomy.

we don't know how it will affect her. is it hard treatment?
how she will fill after?
here they inject alcohol. do anyone has experience with it?
Sclerotherapy is a good option. Everyone's body is different, so each person will react differently to treatment. It may be tender and a bit inflamed after the treatment, but will slowly shrink down if the treatment works. It is a less invasive procedure compared to surgery and the recovery time is a lot less. It's the same treatment they use for varicose veins, so you can look up how that all works and that is basically what they will be doing for your daughter. I hope it all goes well!
__________________
what makes you different, makes you beautiful
Reply With Quote
  #14  
Old 05-20-2011, 08:26 AM
sarfati sarfati is offline
Junior Member
 
Join Date: Dec 2008
Posts: 4
Default

Thank you. We are still searching for the best doctor to do this treatment. In our country there isn't a lot of experience doing that kind of treatments.
Reply With Quote
  #15  
Old 12-03-2011, 01:25 AM
Sammi Sammi is offline
Junior Member
 
Join Date: Dec 2011
Posts: 1
Smile Right Flank Hemangioma

Hi my name is Samantha, I have a 7yr old son with a vasular birthmark growing on his right hip we did not detect this lump till he was nearly 1yr old. Took him to see the doctor they did not no what it was till we was send to the hospital for a MRI. Results showed that there was somethink there and they gave my son 2 names for it but didnt no which 1 it was. Doctors explained that my son had a strawberry bithmark instead of it growing on the outside its growing on the inside all up against his tissues which would be hard to remove but they did assure me that when he is in his teen years they can start treatment ( shrinking the bloodclots with alcohol) yes shrinking but not removing it because of the dangers. Doctors have told me if he rupters his hip he could bleed and there wasnt anythink they could do to stop it. So far we have been sent home with paracetamol to ease the pain at the moment its a size of a big apple and its been bigger than that and bruises they someone has beaten his hip but was told that when it bruises more clots are appearing...So me writing this i would love to hear anyone with a simular story as mine....Thanks Sorry its alil long i could have kept typing lol
Reply With Quote
  #16  
Old 12-08-2011, 11:11 PM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
Default

Sammi, where are you located? I am concerned they didn't do any testing o get proper diagnosis and just want to wait on treatment. I would highly recommend getting a second opinion from an expert in the field. You can write to our experts on the front page of the vbf website.
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
  #17  
Old 09-18-2012, 08:07 PM
joefromtheblock joefromtheblock is offline
Junior Member
 
Join Date: Sep 2012
Posts: 1
Default

One of my twin daughters was born with lymphangioma of the right leg and she has been treated 16 times with sclerotherapy. The size of her upper thigh has been reduced in size, but the bottom part of her leg and her knee are still very big. The sclerotherapy can no longer be performed as the lympnodes are now in vein like form and the needles used for injections cause her veins to collapse, therefore her treatment is at a stand still until she reaches the age 12. She can then opt to have plastic surgery to have the rest of lumps removed.
Reply With Quote
  #18  
Old 12-14-2012, 04:55 PM
fdschatz fdschatz is offline
Junior Member
 
Join Date: Dec 2012
Posts: 1
Default Lympgangioma on legs

I just found this site. My grandson will be 4 in March. He is undergoing surgery today in Brazil for the second time. He has lymphangioma behind the right knee. The first surgery removed a lymphangioma on the upper left thigh. The operation today is being performed because he cannot walk and has pain. The doctor would like to use the drug OK-432 (Picibanil), but it is not available in Brazil. We live in Arizona and would like to help. Any ideas?
Reply With Quote
  #19  
Old 04-12-2013, 08:20 PM
TReynolds TReynolds is offline
Junior Member
 
Join Date: Apr 2013
Posts: 1
Default

Hello! I am 24 weeks pregnant and the doctor's think son has a lymphangioma on his butt that runs down his leg. I'm desperately trying to find information about this as it is seems to be rare in in the leg area. My questions are for those of you with children/babies, were your babies able to sit up, crawl and walk like "normal"?
Reply With Quote
  #20  
Old 05-08-2013, 04:59 PM
JMR00 JMR00 is offline
Junior Member
 
Join Date: Aug 2010
Posts: 4
Default

Are you part of a Facebook group for LM? They are pretty active and people (parents and people with LM) have lots of good advice. Search for 'Lymphatic Malformation Awareness Group'. There is another 'secret' group which does not show up in a search - if you post on the one above someone will be able to add to you to it.
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump