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

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  #1  
Old 11-11-2010, 12:35 AM
kirkity kirkity is offline
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Default Lympangioma in leg

hi there,

my son came up with a lump in his leg that we noticed at about 10 months of age.. over time it has grown a fair bit.. so much so that the last appointment we had it was 10cm wide by 4cm long.. (or visa vera.. i can never get those two right) then when we went back 2 weeks later it had grown to 12cm long and 6cm wide..

that is the first time that is has grown significantly in such a short period of time! it also came up with a rash, and as we guess he knocked it it was also bleeding on the inside which they are now worried about.

i really dont know much about Lympahgiomas or what type he has but they are saying that that is what it is.. we have had 5 ultrasounds and are going back for one on the 29th of this month.. they also want to book him in for an MRI which is kinds scaring me as he needs a GA for it.. he is not even 2.. and then im guessing we will see where we go from there..

its just scary because there seems to be a fair amount of information out there, saying all different sorts of things but i dont know anyone going through this

ive added 2 pics.. not the greatest of pics seeing as he wont let me take them! but the first you can see the rash and bruise and the second you can see how far it comes out of his leg..

http://s1203.photobucket.com/albums/..._6484749_n.jpg

http://s1203.photobucket.com/albums/..._5113901_n.jpg

is anyone else out there going through this? or would like to share some info on what im to expect next??
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  #2  
Old 11-11-2010, 03:40 AM
sweet pea sweet pea is offline
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I would definitely go for the MRI. That is a good next step to see how extensive it is and to see what they get to work with. You want to make sure it is a lymphatic malformation vs another type of malformation. There are vascular malformations, or other tissue malformations. It looks to be cavernous, which is somewhat good as it is less likely to get infected(vs it being more on the skin). I know it can be hard to see your child going under GA(my mom gets teary eyes talking about it), but he is over the age of 1 which will lessen his possibilities for complications. There are children who go under GA at younger ages.

Who are you taking him to? Does the doctor have experience with the condition? It's important that the doctor has treated the condition before. Experience is a must. The doctor will probably book him for surgery.. or you can look into injections(sclerotherapy). I would look at other options before going for surgery. Sclerotherapy works well for macro-cystic lymphatic malformations. If it's micro-cystic, then it's harder to treat. There is also the OK-432 injection, though I'm not sure who you can go to for that.
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Old 11-11-2010, 04:06 AM
kirkity kirkity is offline
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hi there,

thank you for the reply i will definitely take him for the MRI.. which looks like it will be pretty soon after his next ultrasound. i freak myself out more being soo heavily pregnant and dealing with this (due next week)

they say that its quite deep but the thought of surgery is concerning because it does take up quite alot of his thigh like around ways.. and its quite deep.. just makes me wonder how much they will actually have to take away!

i cant seem to find anyone in the Perth, WA area that has dealt with this stuff before.. my doctor doesnt really know whats happening.. we are being refered the PMH and to see the plastics there.. but i honestly dont think they know much themselves.
we had photos taken so they could show the Vascular team and so they could have it on record for anyone else who came in with something like this so my guess is this is one of the firsts for them :/

i definitely want to look into different options before having to go for surgery
can i ask what macro-cystic lymphatic malformations are? like the difference between the cavernous is? i have done a little bit of reading and it seems to me that it is cavernous.. but im no doctor.. i guess once the MRI is done i will have a better understanding of everything.. i just wish it hadnt taken soo long for them to finally do something about it! its been about 12 months since i first took him into the ED!
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Old 11-13-2010, 06:21 AM
sweet pea sweet pea is offline
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Try not to stress too much, you need to take care of your unborn baby, too. If the lymphatic malformation takes up a lot of his thigh, there are ways of "filling it in" with tissue or something. There are some talented surgeons these days. I know they've used muscle from my leg to fill in the area where my lymphatic malformation was removed. The muscle died(supposed to do that) and filled in the area to make it look ok. I see a pediatric plastic surgeon myself(at age 21).

I looked up to see what specialist is in Washington and found one.
Jonathan Perkins, MD
4800 Sandpoint Way
Seattle, WA 98105
206-987-3468 or 2105
D irector of a multi-disciplinary team dedicated to the treatment of vascular anomalies.
Don't know your exact location, but you might be able to see him. ?

It's a rare condition, so not every doctor will know what it is. And some might claim to know what it is, too, but actually don't. That's why it's important to make sure they have experience with treating the condition, so they know what to expect and how to deal with it specifically. Macro-cystic refers to the size of the pocket of lymphatic vessels. If the lymphatic pocket is one larger one or a couple larger ones, then it's considered macro-cystic. Since they are bigger, it's easier to inject them with sclerosing chemicals to shrink it. If they are small, then they would be considered micro-cystic and are a bit harder to treat. From the pictures, it is cavernous. Though cavernous can be either one, micro or macro. They can only figure out which type by the MRI.
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Old 11-14-2010, 01:34 PM
RoseBuddyMom RoseBuddyMom is offline
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I am so sorry to hear your story and see your pictures. It sounds very much like the story of my daughter's leg. Her's is located on the inside of her upper right thigh.

She was about 1 year and a half when her leg got big, swollen and red like that. That is when she was diagnosed with a mixed venous & lymphatic (looks like a rash) malformation with thrombosis (blood clots). She was given a course of antibiotics and the swelling went away. She had an infection and that was what caused the swelling and redness.

She too was not yet 2 years old when they did the MRI under GA. I was a total basket case with worry. In the end it all worked out and she was just fine. But I will tell you that I was a complete and utter mess that day. I know what you are feeling.

She is now 7 years old and coping with her condition with finesse and ease. Her teachers and school nurse are amazed at how non-chalant she is whenever she goes to the nurse to get a dose of Tylenol and Motrin products. We are parents must give them the skills to cope with their condition. (Only after we pull ourselves together!!!)

If it is a Lymphatic Mal - Dr Francine Blei - my daughter's current doctor wrote a parent friendly book to help us lay people understand. There are 2 wonderful clinics in NY that may be able to consult with your doctor's in your area. One is at Columbia Presbyterian Hospital - Vascular Anomaly Clinic and then the office of Dr Blei.

You & your son are in our thoughts and prayers.
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Old 02-05-2012, 02:53 AM
kirkity kirkity is offline
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Hello,

I never got around to coming back on here. It was hectic with a new born baby.

Anyways. Now the doctors are saying that it's a venous malformation. I think I have probably been told 10 different things. He went for his MRI and that's where they got these answers from. They don't want to do anything about it other than watch it. In the last year I have seen it grow so much which they really don't seem fussed about. It is now growing in his stomach.. Its not big.. And it's barely visible but knowing it's going else where is kind of hard to take in.

He also has what they first thought was moloscum (not sure on spelling) which is now some sort of lymphatic like cysts growing on the outside of his skin.. I'll upload a new photo of what it is like today. He is now almost 3 and we are no closer to finding out what will happen with it. They seem quite content to just let it grow.. Which isn't much fun.

Thank you for the doctors names.. I should have probably told you that I'm in Perth, WA.. Which is in Australia. I can't seem to find many doctors here that know exactly what they are talking about. We rotate between doctors. Going from the plastics team to the dermatology team.. In one door and out the other. It's a bit silly but I'm not sure where I should be taking it next?

Any ideas??

http://s1203.photobucket.com/albums/..._media_s hare

http://s1203.photobucket.com/albums/..._media_s hare

Not great photos once again.. Sorry

Thanks heaps

Kirsty
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  #7  
Old 02-05-2012, 11:38 AM
missy missy is offline
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Hi!

There is a good doc in NZ:

Swee T Tan MB BS FRACS PhD
Wellington Regional Plastic, Maxillofacial & Burns Unit
Centre for the Study & Treatment of Vascular Birthmarks
Hutt Valley DHB
Private Bag 31-907, Lower Hutt
New Zealand
Ph +64 4 570 9067
Fax +64 4 570 9510

I know it's not exactly close, but it's better than halfway around the world. He might have some answers for you.

Let us know what happens!

Missy
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