Nevus 101 - FAQ

Believe it or not, there are still people out there who didn't know that Brooklyn has a nevus. So I thought I'd write up a little FAQ page all about Congenital Melanocytic Nevi's. PLEASE....if you would like to see any additional questions on here...just email them to me. I'll include every question. The more we know about this, the better! Any & all questions are welcome!


WHAT IS A NEVUS? -- A nevus is a darker pigmented area on the skin. "Nevus" is just a fancy name for a birthmark that can turn malignant (cancerous).  The long medical term is: Congenital Melanocytic Nevus (CMN).

DO THEY COME IN DIFFERENT SIZES? -- Yes, a nevus can be small, medium, large, or giant. Small nevi's are less than 1 1/2 cm; medium are 1 1/2 cm - 19.9 cm; large are greater than 20 cm; & giant are greater than 50 cm. These measurements are based on how big they'll be when the nevus-owner is an adult.

HOW COMMON IS A NEVUS? -- A small nevus occurs in 1:100 births; medium is 1:1000 births; large is 1:20,000 births; & giant is 1:500,000 births.

NEVUS? NEVI? WHAT'S RIGHT? -- The singular form is "nevus"; plural is "nevi".

WHY ARE KIDS BORN WITH  A NEVUS? IS IT GENETIC? -- This is the greatest question out there because it's answer is unknown. Without getting into the confusing medical terms & pathophysiology about it all....Basically at 8-10 weeks gestation (before many moms even know they're pregnant) the melanocytic cells just stop moving in any particular area in the body. This is how a nevus is formed & this is why a nevus can be anywhere on the body. It is NOT genetic; meaning that a parent with a nevus will not necessarily have a child with a nevus. (If this does happen it is very VERY rare...as a baby with a giant nevus is just one in half a million births.) And going along those lines, a parent who has had a baby with a nevus isn't likely to have another baby born with a nevus. There are hundreds of nevus parents who have multiple children & only 1 of those children has the nevus. Research continues on a daily basis by medical professionals to find out more information about nevi's. See www.nevus.org for more information on the Nevus Outreach organization.


WHAT'S THE CHANCE OF A NEVUS TURNING MALIGNANT? -- A large nevus has up to a 10% chance of turning malignant. A head nevus, which is what Brooklyn has, has just a 1% chance. (This means that it has a lower melanocytic burdon.) The larger the nevus, the greater the risk of that nevus turning malignant. A torso nevus has the greatest risk.

WHAT IS A SATELLITE NEVUS? -- A satellite is a smaller nevus. They can be anywhere on the body & generally look like a bunch of little moles. Some people with a nevus may have just a few, while others may have thousands. These are usually in addition to the bigger nevus. No melanoma has ever been reported in a satellite nevus.

WHAT IS NCM? -- NCM (Neurocutaneous Melanocytosis) is when a satellite nevus is on the brain. A person can be asymptomatic, meaning that you'd never know they had it; or they can be symptomatic. Approximately 7% of people with a large nevus develop NCM. Symptoms of NCM include: neurologic complications such as hydrocephalus (water on the brain), seizures, developmental/behavioral issues, cranial nerve problems, & spinal nerve problems. The larger the nevus, the greater the risk is of developing NCM, and the greater number of satellites, the greater the chance of NCM. Approximately 1% of people with a scalp nevus will get NCM.

HOW IS NCM DETECTED? -- A child should have an MRI, run a very specific way, to see if there are any deposits on the brain.

HOW WILL BROOKLYN'S NEVUS BE REMOVED? -- There are a couple different ways for a nevus to be removed. Brooklyn will have hers removed by the most common form of removal used today...Tissue Expansion. Other forms of removal include: microdermabrasion, chemical peels, laser, & skin grafts. (Of this list, skin grafts are the most commonly used. The other 3 are found to be non-reliable forms of removal with a negative future outcome.)

WHAT IS TISSUE EXPANSION & HOW DOES IT WORK? -- Tissue expansion is when the surgeon creates a little "pocket" right underneath the skin surface. He then inserts a thing that looks like a deflated balloon into this pocket. He then creates a port under the skin; the end of the port will be behind Brooklyn's ear, also under her skin. The whole tissue expansion process is most closely related to a breast implant. Every week or so I will place a little bit of numbing cream on the skin right above the ports. I will then have to inject saline into each expander over an 11 week period. How much saline I inject depends on what the doctor tells me to do. If we're expanding too fast, I'll do less saline over a longer time period; but if we're expanding too slow, then I'll put in more saline more often. We will have to take a picture of Brooklyn's expanders about once a week or so & send them to the surgeon with an update of how she's doing. After the 11 weeks are up it will look like she has 2 huge growths on her head. Our surgeon said at the conference "Head expanders aren't small.... I go big." There will be hundreds of milliliters of saline in there when we're all done.

WITH SO MANY INJECTIONS, WHAT ABOUT INFECTION? -- Infection is the biggest concern while tissue expanders are in place. It's such a big concern, actually, that she can't have any immunizations starting 4-6 weeks before she even has them inserted. This is one of the biggest reasons we waited until January for the surgery...so that we could get both of her flu shots in her. She will miss her 12 month shots, but we'll just do those when she gets the expanders out. She will be put on antibiotics when she gets the expanders inserted. Then, of course, I'll just have to keep my eye on them & watch for signs/symptoms of infection. If there are any whatsoever, then the surgeon will put her on antibiotics again.

WHAT HAPPENS IF THEY DO TURN INFECTED? -- Big problem here! Instead of 5 trips to Chicago...it'll be 7 trips. We'd have to go one extra time to have an emergency removal surgery, and then another extra time to have them re-inserted. So we definitely don't want this to happen. Our cat will be perma-shaved and our house will be spotless. This is a reason why she won't be starting day care 2-days a week like her sister does.


Any more questions you have? Email them to me at merilee@wonderfulworldofvance.com & I'll include them in this list!