Originally Posted by SueEliz100
My 18 year old daughter has been diagnosed with a Retrorectal/presacral lymphangioma. This is internal apart from a small skin lesion on the buttock.
When she was 10 years old, she developed a small subcutaneous lump on her buttock. She was referred to our local hospital, who removed it. They told it it was just a nondescript benign lump, and we thought no more about it. Then, three years later, she got a really painful and strange looking blistery growth on the scar. That was also removed by the hospital, and they said it was a hemangioma. Ten months later it came back again in two places and she had a wide local excision. Again they said it was a hemangioma and nothing at all to worry about. Last March it came back again on the scar. This time the hospital decided to MRI scan her. It was really alarming as they found a huge growth inside her with a narrow channel of growth leading to the external skin lesion. The growths did not enhance with dye. Eventually the tissue samples from the operations were looked at again and it was decided that it was lymphangioma not hemangioma, and that was also what the MRI scan looked like.
We are to have this monitored by yearly MRI scans, but are really worried that leaving the growth untreated will lead to serious problems. It is very near the base of her spine, and she is terrified that it might grow into it. Do you know if it can? And do you think it could grow into her bowel or bladder, which are also close? We have also read that lympangioma gets worse with hormones, and we are worried what might happen when she starts to have a family. We are also worried about going abroad on holiday in case it gets infected because we wouldn't know what to do.
Do you know of anyone who could help us?
Depending on the location of the LM, sometimes it is better to leave it be, since the risks may outweigh the benefits. I don't know of any LMs growing into bone, but it might be possible. Though it is very rare, if it can at all. It can attach to certain areas, which can cause problems, though I don't think it grows into anything. It more pushes things to the side. LMs can get worse with hormones, but that is not always the case. It's usually on a case by case basis, that you can tell if she will have problems or not. I never had problems with my LM when I went through puberty. Though I did have problems when I tried to use the birth control pill(the pill is 'fake' hormones). I have met a couple people who have families and they have LM. They didn't have problems with it at all. I myself want to have a family and have been told it should not be a problem. I would find it to be rare for your daughter to get an infection. She just needs to make sure that she keeps clean, just shower daily and she'll be fine. I have LM in a very similar location, on my right hip/thigh/butt. I have only had one infection in my life and that was when I was 2 years old after having sat down in a dirty lake(my dad wasn't watching me so closely. haha).
I'm not sure about doctors in the UK. I only know of the doctors in the US who are well known for LM treatment. Dr Waner and Dr. Fishman in New York are very well known and good surgeons. Dr. Levitin, Dr Reinish, and Dr Lewin in Los Angeles are good, too. Some of them travel to other countries, doing surgeries there. I don't know their schedules though. I think there is a page on here, with a list of doctors that you can possibly use. You can search by location.