Vascular Birthmarks Foundation Forum - View Single Post - Lymphangioma
Thread: Lymphangioma
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Old 06-27-2005, 06:02 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
Default 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 hvbf@aol.com

Linda Rozell-Shannon
VBF President/Founder
www.birthmark.org

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