Medical Challenges Associated with Large CMN
One of the primary medical challenges presented to people with large nevi is lack of accurate information provided by many professionals. Because it is a relatively rare condition, most doctors have never had experience with large congenital melanocytic nevi (LCMN). Misinformation is often more common than not, and many new parents are given an incorrect and often frightening prognosis, or simply not given information at all. Nevus Outreach was formed to help provide accurate information about LCMN.
More Than Skin Deep
Because it is primarily a skin disease, it is common for people, including some doctors and insurance companies, to think of LCMN as only an appearance challenge. However, there can be more to it than that. Here are some other things that can happen with LCMN.
The life-time risk of a person with LCMN developing a melanoma is between 2-5%.
Between 2-5% of individuals with LCMN will develop a melanoma within the nevus or in the central nervous system. It remains impossible to predict which person with a LCMN will develop a melanoma but some insights are emerging. Individuals with very large LCMN, with thick and nodular LCMN, and those with many satellite nevi appear to be at higher risk as compared to those individuals with smaller LCMN that are flat and homogeneous brown in color.
Neurocutaneous Melanocytosis (NCM)
(This used to be called neurocutaneous melanosis, but we’re talking about the same thing). People with large nevi, and also people who don’t have a large nevus but who were born with numerous smaller congenital nevi, can have melanocytes (nevus cells) in their central nervous systems (their brains and/or spinal cords). These cells produce melanin. Melanin does not particularly belong in your brain, and it can cause complications when present.
It is estimated that 93% of people who have a large nevus or multiple congenital nevi do not have NCM. More than half (60%) of the remaining 7% who do have NCM, don’t have complications from it, even though the melanin is present in their brain or spinal cord. The few who do have complications usually have a relatively good long term prognosis. Many of those with complications have seizures caused by NCM but no other symptoms. If the seizures can be controlled, the patient can lead a relatvely normal life.
Occasionally, a person with NCM may have complications so severe that their prognosis is not so good. About 1% of people with a giant nevus cannot survive these complications. These other symptoms include hydrocephalus, unconsciousness, vomiting, and certain reflex and eyesight issues.
How do I know if I have NCM?
If you have a large nevus or multiple congenital nevi, and you have any of these neurological symptoms listed, ask your doctor to screen you for NCM. NCM can be detected on an MRI if it is done correctly. Here is a paper about MRI scans for NCM.
What can be done about NCM?
There is no treatment for NCM itself. There are various things that can be done for various symptoms. In some cases, removing melanin deposits from the brain appears to be able to stop seizures permanently, but this depends on where the melanin is located. Some parts of the brain are inoperable. A person with symptomatic NCM should be under the care of a neurologist.
Looking for a doctor?
Nevus Outreach, Inc. does not endorse any doctors or medical professionals. We know many new nevus parents, though, are looking for a doctor who has experience working with large nevi. We have compiled a list of doctors who are used by our members. We make no claims or recommendations of these doctors.