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Lymphangioma in Infants
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Lymphangioma in Infants

My 4 month old has yet to be diagnosed with Lymphnagioma, but that is what the pediatric surgeon is lean towards. Can anyone tell me about what exactly I'm about to deal with? Especially if surgery should become involved. Thank you!
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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 ***@****
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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?
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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?

                                                                   hotmom73
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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.
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Avatar_n_tn
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.
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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?
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Avatar_m_tn
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.

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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.  
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Avatar_f_tn
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.
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support groups: lmsupport on yahoo groups, national organization of vascular anomalies, the vascular birthmark foundation, vascular birthmark support on msn groups.
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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
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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.
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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
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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.
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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. :)
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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?
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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.
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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
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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.***@****
Appreciate it.
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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
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Hi Nikstar,
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!
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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?
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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.
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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
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My son is 13 months and he has a lymphangioma in his left eye socket.  He does not have an eye ball in that socket.  The orbital plastic surgeon has never seen this in a child so young and without an eye ball.  The upper lid is so swollen that the inside of the lid is exposed to the elements.  He has already been treated with oral antibiotics twice in less than 6 weeks.  We are going to see the Vascular Surgeons this week.  Hopefully they can do something for my son's eye.
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My five year old daughter was diagnosed with a macrocystic lymphangioma in 2007. One day she had a slight cold the next she had a knot the size of a golf ball coming out of her neck just below her right ear. I immediately took her to the ENT and the doctor said he never saw anything like this before and referred us to his colleague in his office who was wonderful.  He knew exactly what it was on sight and was experienced in OK-432. We were referred to The Children's Hospital of the King's Daughters in Norfolk, VA with Dr. Craig S. Derkay. She was eligible for the study to recieve the injections. Due to constant prayer, by the time the appointment was made the swelling had decreased.  We went to Virginia to see Dr. Derkay and made a summer vacation out of the visit. Fortunately she did not need the shot and we returned home.

We monitor her constantely.  She is now five and will start Kindergarten in the fall.  She had a cold a few weeks ago and the swelling is back but never as large as the original golf ball. We will consult with a new ENT within the week, we moved to another state and are awaiting the name of someone here who is knowledgable of her condition.
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My baby is now 10 days old and after all the bad news I was given he was born without any complications, he has swelling on the left side and a PWS but did not need to go to the NICU and all his organs are doing perfect so far. We do have to go into the vascular clinic but right now I am happy I did not terminate the pregnancy... he is a beautiful baby...
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My son has a large multiloculated cystic mass and it is occupying the pelvis and most of the abdominal cavity.in 2009 it measured12.4 +12.+.8in cm in diameter and he was only 7yrs old.His kidneys are displaced by the mass and the bladder cannot be identified separatly to the mass.i am looking at trying to set some kind off help group up internet bassed and hopfully in the futuresome charity work due to there not being enough knowledge out the ie my docter is not up to date with the condition witch leads me into having to take a trip to my local hospital sometimes to make sure evey thing is ok if anyone fancys a chat my e-mail is michelle_shorthouse***@****
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Hi, my 18 year old daughter has just been diagnosed with retrorectal lymphangioma. Have you got any further with help for your daughter. What type of treatment are her doctors suggesting?

From Elizabeth7272
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Hi,

What country do you live in? Has your son received any treatment for the lymphangioma? My daughter has a fairly large lymphangioma in the retrorectal space. At the moment it is just being monitored, but I am worried that something should be done to remove or treat it.
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My son was born with a medium size lymphangioma above his eye/brow.  They operated on him at the age of about ten months. (Which was a good age because he was strong but, still very baby-ish - easy to pacify.  We had patched his good eye as much as possible, as his other eye was badly occluded.

The operatation took around 8 hrs, and all the doctors involved looked shattered, he lost his brow muscle, but luckily his facial nerves seem unaffected.  If you don't know - Lymphangioma have a nasty way of affecting the area they surround like a tree grows roots.  We were told after his first MRI that the Lymphangioma did go back towards his optic nerve, and that they would leave this untouched, but remove as much as possible to free the vision of his eye.  

The operation went very well by all accounts, what was to follow was a (bit of) nightmere. They opened above his hair line and thru his eye lid, but after the op his skin refused to bond back down, it would fill with fluid, preventing the skin layers bonding, add to that all that was removed and we were fighting a losing battle.  They put a drain in for a week, removed it and the fluid came back.  Taking measurements of the fluid coming from his head was more than a little stressfull.  1 week with the drain in, 1 week with a pressure patch covering the whole area, then un wrap and the fluid just filled back up and his little face would swell!! another op to reinsert the drain and back to square 1.  This went on for weeks- months.  We decided to fly home with the drain in, after insisting to the doctor we would be ok monitoring it.  Our local Dr's unwittingly broke the cycle... They agreed that the drain should stay IN dispite the risk of infection.  We had a couple of good weeks without trouble then we were ordered by the surgeons to remove the drain, our local ENT removed it and we pressure patched as usual (a little too tight).  Two days we decided to check the dressing, to our horror we found a patch of necrousis, and it begain to swell instantly... this was on his first birthday.  His temp shot thru the roof, over a hundred, and an infection set it.  We rush back to the hospital, in I.C.U hes was put on I.V antibotics (again).  This turned out to be a blessing (kinda) as with all the extra white blood vessels his little body went into over drive and finally start to bond, (regardless of the big black patch in the middle - this is still scarring but he's young.  His eyelid is swollen a little, more sometime when he's ill or teething... but i really worried about whats going on behind, and how well his eye is doing...
I read on here, all you can do is give your kid as much love as possible... good advice, do that and hope for the best.  I could always be worse, and to those who are at the worst, there are friends, family and neighbours that are there for you.... and many strangers like me, i'm sure.  Enjoy your kids, and try to enjoy your time, as best you can.
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My son was diagnosed with Lyphangioma on his penis at one month old. We live near Vanderbilt University Hospital. He has a dermatologist there. He s now 14 and theyre bleeding, getting much worse. The last time I spoke to the doc he didnt want to do surgery. However, Ive read of 13 case studies and the surgery worked in that area. Does anyone know of a different doc or treatment that Im in the dark about?
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I have a 9 month old twin daughter that was born with a very large area of Lymphangioma to her neck area from ears around down to about chest area, and has had 3 surgeries, and more than 10 Sclerotherapies, has been hospitalized the first few months of her life and home at that time for very shirt periods, after the first 3 weeks. As she get older the stays are less except with the procedures every 6 weeks, the worse part about that is that she has to be intubated ( tube down throat to keep airway open, and put to sleep) for MRI guided Sclerotherapy. Anyone with questions, or similar experiences, see my blog at Lymphangiomafamilysupport.blogspot
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Hi,
I have a three year old with a lymphangioma sounding much like your little girl, only the left arm. I am interested to hear the type of surgery she had when she was younger and whether it was beneficial. We have no surgeon in our state prepared to work on her, so hoping Sydney might be an option for us. Wondering if your little girl's lymphangioma is painful when it ruptures (bleeds into itself). We have frequent bouts every few months where it enlarges, hardens and is very painful sometimes for a couple of months then returns to a more 'spongy' less painful state in a continuous cycle.

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Hello, my twelve year old son was diagnosed with a lymphangioma a few months ago after living with a lump on the right side if his neck which started as the size of a pea behind his ear. It is now the size of a tennis ball and half of that growth literally happened two nights ago when he complained of pain and woke up with it twice the size. He was already a patient of Great Ormond Street Childrens Hospital following his diagnosis and they have now decided to take it out with surgery. They have explained the risk of nerve damage etc but failed to explain what the risks are with him having an infection which is what they think induced the acute growth. No one else I know has ever heard of my sons condition and I cant seem to find any support here in the UK. It would be good to talk to others who have or are experiencing the same thing as my son and I. Please feel free to email me at ***@****
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Hello, my twelve year old son was diagnosed with a lymphangioma a few months ago after living with a lump on the right side if his neck which started as the size of a pea behind his ear. It is now the size of a tennis ball and half of that growth literally happened two nights ago when he complained of pain and woke up with it twice the size. He was already a patient of Great Ormond Street Childrens Hospital following his diagnosis and they have now decided to take it out with surgery. They have explained the risk of nerve damage etc but failed to explain what the risks are with him having an infection which is what they think induced the acute growth. No one else I know has ever heard of my sons condition and I cant seem to find any support here in the UK. It would be good to talk to others who have or are experiencing the same thing as my son and I. Please feel free to email me at ***@****
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Avatar_n_tn
Olá,
Somos portugueses também e está-nos a acontecer um caso semelhante. Faltam 2 semanas para o parto e apenas foi detectado o linfangioma á semana 32. É enorme, vai desde a órbita direita até ao queixo, passando pelo lábio superior. Se for possível, agradeciamos a partilha de alguma informação útil. Somos do Porto, os médicos mostram-se algo passivos, nós estamos aterrorizados.
Os nossos contactos: telmo.ferreira.***@****  ;  gorete.***@****.

Obrigado
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My daughter was diagnosed with Cystic lymphangioma at 6 months she has this on her left breast has anyone gone threw this with there baby she is now 17 months old and still has this please can anyone help thanks
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My son is two and half years old, diagnose with lymphangioma on his neck. It's getting bigger and there is hardening at one part. Dr advised for surgery. Can anyone please advise or share your experience how to manage the child during pre and post surgery? As a mother whom is pregnant for second child now really appreciate to get feedback on how to cope. Thanks
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my new born has been diagnosed with lymphangioma and he has it in his chest as well as both arms.  I am feeling very helpless.  They have done a bleomycin injection as they say the one in the chest is also to entertwinned. Do you know of any specialits we could talk to as we in africa and no one really knows what is going on here.
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my new born has been diagnosed with lymphangioma and he has it in his chest as well as both arms.  I am feeling very helpless.  They have done a bleomycin injection as they say the one in the chest is also to entertwinned. Do you know of any specialits we could talk to as we in africa and no one really knows what is going on here.
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Hi there.  My new born also has it in his left arm and hand.  he also has it in his right arm as well as in his chest.  How was your surgery.  I am terrified of whats to come in the future as no one really knows how to help here.  I am from Zimbabwe and none of the doctors here have seen it.

Do you know of any specialits I could talk to or email

Thanks

Nikki

My email is nikki.***@****
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My daughter was born w lymphangioma on the floor of her mouth. I was refered to the ENT Specialist. And so they diagnosed her w lymphangioma. That was when she was about 1mth old. When she turned 2mth they said we needed to buy abit time to see whats realy going on,so they put a tracky on her. They promised within tt mth they would proceed to remove it. As time drew nearer to the OP date they kept delaying reason being there were children tt needed the surgery more then my daughter did.. Nt long after tt they say it wasnt good for my daughter to stay in the hospital for long. While waiting for the right time we had to go in and out the hsptl for checkups once every 2 wks. And it went on till now she is almost turning 1 and confremed for OP on the 16th sept 12. My concern is i just read up about this 9yr old girl who has the same prob as my daughter. And she hadany complications! And the Dr did amphasize tt there risk involve as in droopy eyes due to nerves damaged. Droopy lips.. Is there any way to realy avoid this?? Im very streesed due to this issue!! Please help!!
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My son will be 7 years old next April and he was diagnose with hemangioma since born for his right arm & fingers with some still unknown, sometimes visible sometime not lump under skin around his chest. We've been seing doctors regularly mainly for Dermatologist. After 3 and half years, he start complaining for irregular pain around his wrist as lump as big as a peanut started appear. The dermatologist refer us to surgery department and for the first time we do MRI. From the MRI, the radiologist suspected it was an AVM. As no specialist for extremities available near where we live, he refer us to one specialist unit for hands about 100miles away from us. Start from early this year the hospital where the specialist unit located has been our second home. They have diagnose him with lymphangio-venous malformation. We have done 2 surgery but it was far from enough. The doctors there are very open about the prospect of surgery. But here in Malaysia, we have only excision option as all drugs that I've read develop in US are not in used here. But I'm really feel blessed for what we have now. I just hope my son can go on as normal as possible.  
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I also heard same feedback from my son doctors. His lymphangioma was at his extremities. When they open the area it was swelling so bad. Once they remove the things, to patch-up his skin was very hard.
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I have lymphangioma on my left leg, now i have 23 years,I have been suffering this problem from by birth.  at the age of 14 months remove the lyphms on one side and at the age of 14 some doctors do the shunt operation for that.
No one was not give best treatment for that if anybody knows the best treatment for this please give your suggestion to me, i know it does not never cure but I can take care on this i relief from that pain    
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My son has just been diagnosed with the same condition and he is 3 years of age. I would really like to hear your story can you send your info so I can email you please. I have limited info on this condition and would like to get support from other people who have gone through this. thankyou
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So sorry to hear of your daughters lymphangoma as I've lived with it in my right arm as well but for 52 years now. I've had 5 surgeries, the first at about 1 year and the last at age 5. They removed 3 large tumors from my upper arm beginning from my armpit to elbow, then removed 4 later from the elbow down to my wrist., which required a skin graft to cover the amount of tissue removed., at age 5. I can tell you in my case that somedays the pain from the "clots" that form can be over powering, and recently after a scratch from the Xmas tree I developed cellulitis which has now become 3 painful swollen and red clots., I see the Dr in 2 days, with I'm sure much the same result..."we don't know enough about this to help you so keep doing what you've always done". If I could offer you any advice it would be to love her and offer comfort when her pain is horrible, let her learn her limitations as she grows. About 32 years ago Dr. William Blair did a research study at the university of Iowa on this rare disease and at the time there were only 11 other known diagnosed cases in the US. Good luck to you and your daughter...btw I've got 5 beautiful grown children, and my lymphangoma did not stop my LIFE!
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Hey Angie.. I have a couple questions for you!! I've been trying to find info about lymphangiomas of the leg. Is that what your son had? I am almost 24 weeks pregnant and there is a growth on his butt that runs down his leg. We are doing a baby MRI next week but I have questions now. With your son's leg slightly larger was he still able to sit, crawl, walk, all the normal baby things? Was he still able to do all those things after treatment?
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This is my first time posting to this group. I have always been a silent observer, hoping to find an answer to my sons lymphangioma problem. Leo,was diagnosed 2 years ago with a rare for pm of lymphangioma in his lower right leg, causing extreme swelling after exercise or simply being on his feet all day. He had an invasive biopsy and MRI to determine his condition and we have now found that the most effective treatment is a compression bandage every day on the affected part of his leg. I have found an adult elbow sleeve that works well as there are no youth sleeves that are small enough for his leg. After his biopsy the healing process took 2 months as the fluid had a place to come out of his leg. Sometimes I wondered if that was better, as the swelling would not be so great. I feel now that I know more about this condition than every doctor I go to, but I would like a follow up opinion. I can travel to Salt Lake or Boise. Does anyone know of a doctor with experience in this condition?
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Hi I'm 26 weeks pregnant and my baby has just been diagnosed with lymphangioma it started in the right kidney then filled the abdemen and now its in the right leg. I've been told that it is very rare, so they can't give me any info or statistics but they say from what they have read it seems to be a high mortality rate and we should consider a termination. Can anyone offer any advice?
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Hi,

How long it will tak eto open the eyelid after a lymphangioma surgery on eyelid
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My,

My four old year son found lymphengioma on his left eye lid. Had a surgery three months back. the removed as much as the possible. But His eye is not fully opned properly. Docters saying need anothe surgery to lid open.
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I have a grandson who is now 7 yeares old. A the age of 14months he had a tumor wrapped around his heart. The doctors told us that it looked like cancer. We were devastated. They said it had to be surgicallly removed. During the surgery which took 3 and half hours, the said it looked like it was not cancer but lymphangioma. The tumor was sent off and it was lymphangioma. The doctors said they were sure that they got it all. Since then he has had respitory problems and asthma problems. He has been cleared from the doctors. They have done x-rays for several years to make sure that the tumor does not grow back. Even though he has these other problems I thank God for the speedy actions they took at Kosairs Children Hospital in Louisville, Ky.
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