my 16 month old just had surgery on her left hand and forarm. She had a lymphangioma partialy removed but it was to entangled in her bone and blood vessals so they couldnt compleatly remove it so it will start to regrow. To slow the groth they compress it with a compression garmet she will wear one for the rest of her life. Goodluck and if you ever need to talk my email is ***@****
My 18 month old daughter has a lymphangioma in her eye socket, which can't be removed entirely. About a month ago she had an operation to remove as much of it as possible because she could no longer open her eye. Her eye looks really good now but it's only a matter of time before it grows back. Has anyone else experienced (or know someone who has experiened) something like this?
I've recently been given a differential diagnosis of lymphangioma of my left eye. At 34 years old, I was experiencing excrutiating headaches and my eye appeared to be bulging. CT Scan and MRI showed a tumor--eye specialists say it's too risky to biopsy as it surrounds the optic nerve. My vision is 20/20 in that eye. They want to monitor it every 3 months with MRI to monitor changes in it's growth, consistency, etc. As a young child my eyelid appeared to very weak--ptosis. Any advice?
I have a Lymphangioma on my left arm. For 26 years it was nothing but an aesthetic component. I was a kid like any other and just had a "different" arm. I had to go through a reduction on my fingers when I was about 14 months old which did not go well and I ended up losing one of them. Now I have compression issues on my ulnar neurovascular bundle which means my life of surgeries is about to start as at this point it is too ingrained to be removed completely. For those with kids with macrocystic lymphangioma on face/neck hope has arrived in the form of a new medication called OK-432 which was originally developed in Japan and is now in phase 2/3 for FDA approval. There's a website for the University of Iowa with a whole lot more of information if you would like to take a look
But the best thing you can offer to a kid with lymphangioma is unconditional love and support. They will - like any other different kid - be picked in school, have their self-esteem tested and will need strong parents to re-assure them of who they are.
I am a mother from Northern Canada (remote isolated community) of a seven (will be 8 in May) years old daughter who has been diagnosed with lymphangioma of her left arm, it around her left side of chest and up the back side... to date the only treatment she has is an injections to lymp nodes. we have not discuss any surgery with the doctors at Sick Kids Hospital, she has been hospitalized to due infections at least 3 to 4 times a year since she's been borned, she was born like this. I am hoping there is a treatment out that works, our docs did not suggest surgery at this time, of all the available materials regrading this is limited. My email is ***@**** if you have more questions.
My daughter was diagnosed with a lymphangioma on her left butt cheek when she was only one month old. She is scheduled to have surgery when she is three months old, which will be the first week of September. I do not know that much about lymphangiomas and I am scared for her. Do you know of any support groups?
I am a father with a 6 yr old girl that born with lymphangioma on her hand and axila. On her first 2 years my wife and me suffer a lot visiting a lot of doctors and made studies to know why she has 2 gross fingers and a rare ball on her axila. All that I know today is that she has a malformation on her lymphatic system on those parts and it has been grown exactly at the same size of all her body so it has the same proportion than when she borns. Most of the time nobody notice this problem, she lives normal, plays normal and we all are happy.
I still don´t know how to treat her here in Mexico but I will continue investigating. The only doctor that seems to know about lymphangiomas said to us that we should wait until she grows and just in case that her gross fingers are not usable think on a stetic cirugy. He told that her problem is not a cancer, it´s just the fluids that she can´t process what grosses her hand.
I will continue seen if OK-432 is usable on her case and if I can do it here in Mexico. Hope someone knows about this in Mexico.
My son was born with lymphnangioma on his neck. It was monitored for a few years and when he was 3 it had growm quite a lot and surgery was advised. We went ahead and all is good. He will be 10 in two months time and his only evidence of his lymphangioma is a very small scar just on his hairline.
Lymphangioma is usually very hard to get rid of completely and requires multiple treatments. It doesn't always have to be surgery. If it is macrosystic, you can try sclerotherapy or the OK-432 injections. It unfortunately doesn't work as well with microsystic lesions. Surgery is one of the most used form of treating the lymphangioma, but I would try the other forms of treatment first. And just because your child has lymphangioma does not mean that they will not live a great life. They can do anything everyone else does.
support groups: lmsupport on yahoo groups, national organization of vascular anomalies, the vascular birthmark foundation, vascular birthmark support on msn groups.
My son is now 6 years old but from the time he was 2 months old till about 3 and a half he had about one dozen surgeries due to lymphangioma and the complications due to the lymphangioma. the key to this is first of all get a surgeon you completely trust and let him do his job. I had Dr. Vaughn out of Cooks Childrens Hospital in Fort Worth, Tx and he was amazing. Be strong for your child and for yourself and remember nothing happens without a reason. There will be a light at the end of the tunnel if you just wait for it you will see
Hi, I am a mother of three beautiful boys and my youngest ( 5 now) was born with a leg slightly larger. He had always gotten his immunizations regularly until one office visit changed his life. Little did we know he had abnormal lymphatic tissues, because our Doc at the time advised not to do anything about our son's abnormal leg unless we encounter problems. Well at my son's 1 1/2 yr immunizations, the needle apparently hit an abnormal tissue and my son developed a HUGE painful grapefruit sized infected hemetomah! We rushed him back to the Doctor because this thing developed so quickly and became HOT to the touch and hard as a rock! I was so scared and everyone at the doctor office was scared. We rushed him to the hospital where we stayed for 1 week, my son had 105 fever and had been on Vancomyisin, going under scans and such with no results. We were very frighteneed we were going to lose our little boy. I asked to be transferred to Phoenix Childrens Hospital where immediatley that hour upon arriving, the surgeon knew what it was and did surgery next A.M. During that scarey time, our son had been through so much with going under to try to find what it was. The docs at the first hospital came up with sooo many possible things.... I'm sorry, but when your child is sitting there with 105 fever for a week and no cure, something's wrong! Please do research on immunizations and realize this is an ongoing thing, he has never gotten another immunization and he is fine. The doc had to cut 10 cm. of his leg and rear. He does have a scar and his left rear is a little less than, but he plays fine. The doc did say it may come back if he falls really hard on it though. I found God in that period of time and I am so thankful he is alright. I am not trying to scare anyone, just people need to understand, because we had no clue what happened, no one did forever it seemed. God Bless.
i am a 19yr old girl from england who suffers from haemangioma and lymphangioma the pain is very hard 2 live with but its something i have to deal with i was under great ormond street hospital and had many ops but it will never go away because its in my main facial nerves and it has grown back after half was removed and it will continue to grow back because that what tumors do they grow if not completely taken out
My 21 month old son has lymphangiomas in his neck. We began noticing it when he was three months old. We have been doing surgery after surgery just to sustain it because it presses against his throat lining which makes it difficult to eat, breath, etc when the tumors begin to enlarge. Anytime he gets any infection in his body the lymphangiomas tend to increase in size. Now, we have noticed that he has a decent sized lump on his back, and an even larger one on his buttox. The lymphatic tumors in his neck also make his left side of his face seem much larger than the right side, but since the surgeries it has gotten a little better. Good luck to everyone that has to go through this. I wish this was just a cosmetic issue like lymphangiomas normally are, but this issue continues to test my son's immune system simply because it is in a bad location. It affects his entire sinus system, ears, and normall drainage in the facial/neck region.
I am 27 years old and I was diagnosed with lymphangiomas and hemangiomas when I was 3 years old. (It is on my side from my shoulder blade down to almost my belly button.) We did not know it at the time, but this was a misdiagnosis. The doctor performed several laser surgeries which did absolutely nothing except create a large amount of scar tissue that the lymphangiomas came out on top of. When I was 11, I was diagnosed with lymphangioma circumscriptum. That doctor chose to excise the area and that is the only type of treatment that has ever worked for me. I've had so many surgeries that I've lost count; the lymphangiomas always come back. However, these surgeries have allowed me to live a mostly normal life. My last surgery was in the summer of 2000, and I will probably have to have another surgery next year. Good luck to you all and if you need support, then please contact me. I'll be glad to help in any way that I can. :)
My 21 mth old son has just under gone the OK-432 injection in his lymphangioma on his neck (diagnosed at birth and got very large this summer, sixe of 2 soft balls just under his chin) The swelling with ok-432 looks pretty bad right now, we are on day 4. I am just wondering if anyone has under gone this procedures and knows on average when will the fever and swelling go down?
My son was born with what they believe is a lymphangioma on his right elbow. I have just recently been to Sydney for an opinion by a team of specialist doctors. My baby is only 8 and a half months old. I have been given the choice that they just take a biopsy or they take the whole mass. I think taking the whole mass would be better if it can be done. Has anyone else had one on their elbow? Have you had it removed? Do these often grow back? I would like to hear other peoples experience and if anyone in Australia can share info I would appreciate it.
hi my girl born with Lymphangioma in the whole neck and of bass of the language, it was already operated once to the right side and they removed a mass of the size of an orange now she state in recovery and it began to grow in the left side and they already noticed that what had removed of the first grew already again, dont know the one that medicate specialist have of appealing for my daughter to be good now its the 3rd month everydays going to the hospital its sow tiring im from portugal
My son has orbital lymphangioma on his right eye. I am seriously seeking help to treat my small boy. Now he is at 3 yrs old. My email is c.***@****
Hi I am 22 weeks pregnant. I was told last week that Lymphangioma has been found in the thigh in the abdominal wall and right kidney. The offer of termination has been given or to fight on with a possible awful outcome of the baby dying or relentless surgery and disability for the child. It is a awful situation for my partner and I. At present all the organs are functioning normally. We have been seen at kings hospital in London by the best. Where the Lymph is in our situation makes it a very rare case. Has anyone had it in these places. thank you
I live in Melbourne Australia and have a daughter with lymphangioma of her right arm. She had many surgeries as a baby when she lived in an orphanage in Thailand. She is 10 years old now and doing well, she occasionally has bleeding into the tissue but no infections so far. She will need further surgery which we hope will not cause loss of function in her arm. Please let me know if you would like to chat further as we are a rare breed in Aus!
My 31 year old daughter has been diagnosed with lymphangioma in the retro peritoneum.
Can anyone help us to locate an expert to consult - hopefully in Australia !
Is there anyone else out there sharing this condition whom she could contact?
I am 34 weeks pregnant now and my fetus was diagnosed with left thigh, cutaneous and subcutaneous abdomen, and kidney just like yours... I understand what your going thru and I just praying my baby does well.
My daughter was diagnosed with lymphangioma 18 months ago, on hewr neck. She has ok432 treatmnet and so far successful, her lump keeps coming up and down at the moment and is sometimes very painful. She is 13 years old and is now monitored every 3 months to see what it is going to keep doing. Would love to chat to someone dealing with same things. We live in New Zealand