Wow, what a story. I have heard of this condition and actually believe someone on the parentsplace birthmarks forum came by with the same type of lesion.
They are considered vascular tumors, so this would definitely be the place to be for some support.
I would assume that you saw Gerald Goldberg in Tucson. He is the best derm in Arizona. I have no idea about plastic surgeons.
I would consider a second or third opinion. At this point, you might wish to call/try Dr. Waner in Arkansas.
At least give them a call and see if you can set up a phone consultation or something via email.
What I know about them is they usually appear in infancy, but can show up at any age. In lesions present since infancy, the superficial lymphatic malformation may communicate with deeper cavernous lymphatic spaces and a simple excision of the superficial portion may not be sufficient to prevent recurrence. Lymphangioma circumscriptum has a high recurrence rate after excision because of its deep component. Lymphangioma circumscriptum can occur in conjunction with cavernous lymphangioma and cystic hygroma.
I would guess the dark black color would be considered the presence of red blood cells or hemorrhage? If so, the presence of red blood cells might means it is not a simple malformation of the lymphatics, but a mixed malformation made up of lymphatics and blood vessels.
It is recommended that an MRI be done before treating to determine if underlying musculature is involved. An MRI can define the degree of involvement and the entire anatomy of the lesion. An MRI can help prevent unnecessary extensive, incomplete surgical resection, because of the association with a high recurrence rate.
Immunohistochemical study is useful in differentiating lymphangiomas from hemangiomas in difficult cases.
Treatment modalities for this type of lesion would be surgical excision or CO2 laser, but both have drawbacks with recurrences. The preferred treatment for lymphangiomas is complete surgical excision.
On the basis of the Whimster hypothesis, the large subcutaneous cisterns should be removed to prevent the lesion from resurfacing.
Adequate excision of lymphangiomas can be difficult and, at times, unfeasible. This problem is the main reason for the high recurrence rate.
Tumors that are confined to the superficial dermis are more amenable to surgical excision, which is associated with a high rate of success.
The use of other treatment modalities has been advocated; these include cryotherapy, sclerotherapy, and cautery.
Vaporization with a carbon dioxide laser has been tried with good results.
Rarely do cutaneous lymphangiomas interfere with the well-being of patients. Patients are expected to live a full healthy life, and they usually seek medical intervention because of cosmetic reason.
Lymphangiomas represent hamartomatous malformations with no risk of malignant transformation.
In the case of cystic hygroma, total surgical excision is appropriate to prevent complications such as respiratory compromise, aspiration, and infections in critical areas, such as the neck.
Lymphangiomas have a strong tendency for local recurrence unless they are completely excised.
Recurrent episodes of cellulitis and minor bleeding are not uncommon.
The plastic surgeon may or may not have any experience with the CO2 laser. It is a powerful laser and should only be used in the hands of the very experienced. I'm certain that Dr. Goldberg could let you know who has that experience. He is a laser specialist so he could advise.
You proabaly already knew all of this, however possibly others who come by might understand the condition a little bit better.
Best wishes on helping your precious angel and please keep us posted.