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mrsflipper 05-24-2004 05:36 PM

I would like some more information on lymphangioma my daughter was born with one and I would like all of the information that I can get to help better her life and her future as a young lady. I have been searching the web for answer and the very most that I have came up with is I need to change my daughters diet and a few other things down the line, but that I use help with the pain of the lymphangioma.

nickbar 05-25-2004 02:29 AM

also look under lymphatic malformation (same thing). I will send you info.


nickbar 05-25-2004 09:36 PM

Lymphatic Malformations

Lymphatic Malformations used to be called cystic hygroma, hemangiolymphangioma, or lymphangiomas. The lymphatics serve as a collection and transfer system for tissue fluids. When something disturbs this system, a lymphatic malformation is formed. The excess fluid accumulates and the affected lymphatic vessels enlarge and you see a mass.

Research indicates that an absence of the correct number of lymphatics is the cause of the lymphatic malformation.

Lymphatic malformations are sponge-like masses of abnormal channels and spaces containing clear fluid. Leakage from the skin can occur. This can further lead to cellulitis.

If the lymph vessels in the face are affected, the face swells because the normal active transport mechanism has been disturbed.

These lesions can occur anywhere but are common in the head and neck area. These lesions may be superficial or deep (superficial ones are seen in the mouth area and look like frogs eggs). These lesions increase or grow with the individual. They may enlarge following an upper respiratory infection.

Lymphatic malformations are either micro-cystic or macro-cystic. Lesions that are macro-cystic (large spaces in the lesion) appear as a soft, clear mass under normal or bluish skin and may respond to a drug called OK-432. This treatment should be discussed with a physician to determine if the patient is a candidate; and should only be attempted if no prior surgery has been performed on the lesion. Micro-cystic malformations are small raised lesions containing clear fluid. These superficial lesions appear like small, clear bubbles, sometimes turning dark red due to bleeding.

It should be noted that only a skilled surgeon should operate on a lymphatic lesion. By removing some lymphatic vessels during surgery, you can actually cause enlargement of the lesion and further growth period.

MRI and CAT scan are used to diagnose lymphatic malformations. Laser treatment, sclerotherapy, and surgery are used to treat or remove these lesions.

this material is directly from the VBF "facts about vascular birthmarks and Tumors pamphlet.


Bearsmom 05-18-2005 11:09 PM

Re: Lymphangioma
Iam very new to this site and I have a lot of questions. First this is our story. Our daughter who is 9 has cystic hygroma. She has had 4 surgeries. On May 4th she was injected with the Ok-432 (aka) Picibanil. Wondering if someone had info on why you should not try Ok-432 after surgery. Research just states that it must be over 6 months after surgery before you can be injected. The doctor my daughter goes to wait until the cyst is soft before doing the next injection. And they find that they have a high success rate. We know that injection after surgery is not the best option. But the injection was really the only safe option she has at this point. So far her reaction has been good. She will most likely have to have another injection in August. But we will know more at her 8 week check up. On the day they injected my daughter two other children were also being injected. I do agree that the injection should be the first thing to try if you can. That was not the case with my daughter. Thanks for having a great site. Hard to find.

GoBoilers1996 05-19-2005 06:15 PM

Re: Lymphangioma
Bears Mom,

Where do you live? I also have a daughter with a LM. She is 21 months old. We liked into OK432 but did not qualify for the trial.

Mrs. Flipper
Where is the LM located?

Both please feel free to email me rachel_e_cramer @ (don't put the spaces in.)


AldyNg 06-14-2005 10:57 AM

Re: Lymphangioma
Hi Corinne

I'm a mom of 2 boys. Our 1st boy had an Ultrascan last month and found out that he is having a Lymphangioma. Suddendly our world turn BLACK! A big shock for us. I hunt many days and nites for an answer what is it about. I'm glad that I come accross to this web and read thru all your correspondence.

Currently we lived in Jakarta, Indonesia. Our home town is in Singapore. I would like to check with you or anybody who know and can recon us a specialist in these. I heard about OK-432 but currently is not available in Singapore.

What is the size of LH of your child ? and where is located if I can know...

Thank you so much for your reply......

AldyNg 06-14-2005 11:04 AM

Re: Lymphangioma
Hi Mrs. Flipper,

I read your message.. May I know what kind of diet we shud do for a child with LM ?

Your reply is highly appreciated.


nickbar 06-22-2005 05:32 PM

Re: Lymphangioma

Sorry it took me awhile to find the above few messages. I did post the info above on lm last year. This is information directly from the VBF pamphlet.

I am going to look into your question and then I will get back to you.


nickbar 06-27-2005 07:02 PM

Re: Lymphangioma
I have a reply to your question from Linda Shannon (VBF PRESIDENT AND FOUNDER)

OK-532 has has some terrific results with macro-cystic lymphatic malformations. Why? Because with the macro-cystic lesion there are large, cavernous pits that swallow up the virus (OK-432 is derirved from a virus) and thereby shrink the lesion. If it is a micro-cystic, the pits or depressions are too small to absorb the virus and therefore it is not successful. The reason that OK-432 is not as successful on a macro-cystic lesion that has had a previous surgery is because the scar tissue becomes a solid mass and does not allow the OK-432 to penetrate and therefore the scarred area does not shrink. Now, if someone has had a child that was treated with OK-432 on a macro-cystic lesion that had a previous surgery, I would like to hear if there has been some shrinkage. This mom (Lora (aka)Bearsmom) notes that there has been shrinkage despite a prior surgery. I would like some details about this. Perhaps the surgeons cut outside of the lesion so that the scar tissue was not directly in the lesion and therefore there was a response. I am happy to hear it has shrunk. The remainder that is now the size of a marble should be removed by ONLY one of our skilled surgeon so that they do not stimulate a new lymph response. If the marble sized lesion is removed by someone who does not know what they are doing, the lesion will swell larger than it is now. That is why most docs just "leave it alone" after treatment. They are concerned that they do not want to have more lymph fluid filling back up in the affected area. I'd love for Bearsmom to email me a before/after picture of her daughter so that we can show it to a few of our docs who are not "pro OK-432". She can email me at

Linda Rozell-Shannon
VBF President/Founder

Bearsmom 06-27-2005 09:09 PM

Re: Lymphangioma
I am Bearsmom,

Sorry to start all this trouble however I am as protective of my child as a bear mom. That why I chose bearsmom. Some info about OK-432. This is taken right from a dr's report in 2002. OK-432 is a product of low virulent bacteria strain, Type III, Group A streptococcus biogonese that has been incubated with penicillin G. It is not a virus. This injection helps your body fight the cyst, it scars the walls and when scars touch one nother they grow together never to fill up again is the best lay way I can tell you what it does. Larger the area to glue together the better. I agree only skill dr will ever treat my daughter and it just happens to be my daughter dr. We will leave the cyst in as of right now. Will not know how much is "glued" together until MRI. However marble is now pea size. And does not interfer with her daily living. On May 4th injection June our daughter had a swim meet, no sore throat, no sitting and watching her friends play, and no crying because her throat felt funny. THAT IS a success right there. A nine year old being nine years old. Sorry about all this fuss but I just ask a question " why is someone say no injection after surgery. As a nurse I tend to ask a lot of medical question just so I can learn something new that might help someone else later on. Just why I became a nurse to help, the weak. helpless and needy. If my question upset anyone sorry. Lora

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