©Nevus Network

GENERAL INFORMATION
ON GIANT CONGENITAL NEVUS OR NAEVUS

....A RARE SKIN CONDITION SOMETIMES BETTER LEFT "AS IS"

....because nevus people are often worse off after treatment than before...

This information is intended to provide basic general information only.  This information may or may not be applicable to any particular medical situation.  No one is to act on the medical information provided here or by any member of the support group but to act ONLY on the advice of their personal physician(s).  The Nevus Network does NOT provide medical advice or physician referrals at all.  You must seek specific medical advice from your own personal doctors. No endorsement of any product or service or treatment should be inferred or is intended.

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QUICK NEVUS TREATMENT RISK/BENEFIT ANALYSIS

 

FREQUENTLY ASKED QUESTIONS:

WHAT IS A NEVUS?

WHAT ARE MOLES?

HAVE SOME BABIES ALWAYS BEEN BORN WITH MOLES?

WHY DOESN'T NEVUS SKIN SWEAT?

WHY DO AREAS OF NEVUS SKIN LOOK THINNER THAN NORMAL?

WHY DO MOLES APPEAR?

HOW COMMON IS A NEVUS?

WHAT ARE MELANOCYTES?

WHAT IS NEUROCUTANEOUS MELANOSIS?

IS MAGNETIC RESONANCE IMAGING HELPFUL?

WILL CONGENITAL MOLES CHANGE?

WHY ARE NEVI IMPORTANT?

WHICH MOLES MAY DEVELOP MELANOMA?

WHAT IS THE RISK OF CANCER?

DOES MELANOMA OCCUR IN PEOPLE WITHOUT GIANT NEVI?

IS MELANOMA CURABLE?

DOES SURGICAL REMOVAL LOWER THE RISK OF MELANOMA IN THOSE WITH A GIANT NEVUS?

WHAT IS THE BEST TREATMENT FOR CONGENITAL MOLES?

WHAT IS DIRECT EXCISION?

WHAT IS SERIAL EXCISION?

DO SKIN GRAFTS HELP?

WHAT ARE THE PROS AND CONS OF CULTURED SKIN?

WHAT IS INTEGRA?

WHAT IS DERMABRASION OR CURRETAGE?

HOW IS LASER TREATMENT USED?

ARE CHEMICAL PEELS HELPFUL?

HOW DO SKIN EXPANDERS WORK?

ARE THERE GIANT NEVI THAT ARE TOO GIANT TO BE REMOVED?

WHAT TREATMENT OPTIONS ARE AVAILABLE FOR A FACIAL NEVUS?

...FOR A SCALP NEVUS?

...FOR GENITAL AND RECTAL NEVI?

...FOR AN ARM OR LEG NEVUS?

WHY IS NEVUS SKIN SO DRY AND ITCHY?

WHAT ARE THE GOALS OF SURGICAL EXCISION?

HOW WILL THE DECLINE IN THE QUALITY OF MEDICAL CARE AFFECT US?

WHAT TYPE OF CONCERNS DO MOST PARENTS HAVE?

HOW OFTEN SHOULD A CONGENITAL NEVUS BE EXAMINED IF IT IS NOT EXCISED?

WHAT IS KNOWN ABOUT THE SAFETY OF BIRTH CONTROL PILLS AND PREGNANCY IN WOMEN WITH GIANT NEVI?

WHAT ARE THE BENEFITS OF HAVING A GIANT NEVUS?

WHAT CAN WE DO TO PREVENT MELANOMA?




 QUICK NEVUS TREATMENT RISK/BENEFIT ANALYSIS:

Over the years of discovering all the dos and don’ts of surgical treatment with previous nevus people, we’ve learned a lot. Now we know that with each individual nevus, the doctors should conduct a simple risk/benefit analysis in deciding whether treatment would be beneficial or not….. The big question for parents to ask themselves is not "Should we have surgery on our child's nevus?" but instead "Is there any treatment for our child's nevus that really works?" So many nevus treatments don't really work. For example, many nevus children still receive dermabrasion for a facial nevus, but this treatment almost never works well enough to "pass" and parents then opt for expander surgery after they realize the dermabrasion has failed. That means the poor little nevus tyke has to go through double surgery and double trauma! Others have accused the Nevus Network of "having an agenda" and we're proud to say that we certainly do. Our agenda is to prevent nevus kids from suffering from botched treatments like many of us nevus adults have suffered. Contrary to popular myth, children are not resilient. Most children carry the pains and wounds of childhood for years into adulthood, sometimes for an entire lifetime. It is a very rare adult who has "recovered" from the pains of their own childhood. That is why there are so many adults who "escape" in alcohol, drugs, excess food, gambling, etc. So whether the trauma of growing up with a nevus is less or more than the trauma of going through nevus removal is often difficult to determine. Some doctors do a much better job at this than others. The key is finding a good doctor. Dr. Paul Tessier (1917-2008), a famous French craniofacial surgeon, often said, "If it is not normal, it is not enough." And we agree! If nevus treatment isn't good enough to "pass" as normal, it simply isn't good enough. But let’s look at the thought processes which should occur through some examples….

Nevus child with a hyper elevated satellite of the foot that rubs on her shoe:
Well, that satellite will be a constant irritation over a lifetime and perhaps with a minor surgery or two, the rubbing could be eliminated, with relatively low risk and potential high benefit, so this would be worth surgerizing. This is a real case and excision was attempted, the satellite was very deep, so the scarring was significant… One ended up trading a bumpy satellite for a scar, but it seems clear this was definitely worth the attempt, as it was low-risk and could have turned out very well.

Nevus child with several satellites of the face including a large silver-dollar-sized satellite of the right cheek that is cosmetically obvious:
Again, this is relatively low-risk with high benefit, so minor surgery might be worthwhile. It was done, the scar was bad, and it was redone 2 more times, a total of 3 attempts. The last scar was ok, nothing great, but passable. The child was I. The plastic surgeon asked if I wanted a 4th attempt at age 10 and I turned him down. I’d had enough, and by that age, I knew I didn’t scar well. Even though the scar is not great, it turned out better than keeping a big satellite smack dab in the middle of my cheek, so I am glad I had this surgery.

Nevus child with many satellites and including a large 3 inch by 1 inch satellite of the calf:
Again, cosmetically noticeable, low risk, potential high benefit, worth an attempt, which was done. Unfortunately, the pigment seeped back, so the result wasn’t optimal, but still worth an attempt. This was I again at age 4…. Those were the only 2 of all my surgeries I would now choose myself, knowing all that I have learned... I am not anti-surgery, just anti-useless surgery. My 5 major bathing trunk surgeries were all useless except the 2 minor ones on large satellites described above. I also had about 15 other small satellites removed, which were all useless as the scars were generally bad. Some nevi are fixable; some are unfixable. Sometimes treatment helps. Sometimes not. Any good doctor who understands the technical limits of present-day surgery should have some ability to arrive at a reasonable risk/benefit analysis. And if not, we need to find better doctors!

Let's take some more examples:

Nevus newbie with half a back nevus and no satellites:
This gives a fairly low risk and high benefit for removal.... A person cannot monitor a back nevus themself (I remember my 3 lights and 2 mirrors rig-up to see my own back). There is plenty of “normal” skin to use, so with a reasonable amount of major surgeries with expanders, this nevus could be removed, sometimes with results almost miraculous! So this is certainly a possible go, surgery-wise. Low risk/high benefit.

Nevus kiddie with whole back nevus and sats all over:
Well, this now is high risk, low benefit…. I don't care how good the surgeon is; there is no “normal” skin anywhere to get to. It would require lots of surgeries, lots of time spent recovering, high chance of infections/complications, etc. Perhaps this nevus is better off left as is……

Nevus kiddie with whole back nevus w sats and warty, oozing weeping sores in the nevus:
Well, this has no good solution, but the sores have got to go, so some surgery has to be done. Cultured skin, full thickness skin grafts after expanding abdomen, even thin split-thickness grafts if you are desperate, etc, etc. The main goal is to get rid of the warty, oozing area even though there will be scars and lots of nevus left. High risk/high benefit.

Nevus kiddie with whole back nevus w sats all over and many growing lumps/bumps in the nevus:
Same as above. High risk/high benefit.

Nevus kiddie with whole back nevus and melanoma:
Suddenly this same nevus is now high risk, and VERY high benefit. The whole nevus should be removed if possible. Maybe cultured skin, split thickness grafts, whatever. One will be mangled and scarred, but that is a whole lot better than being dead!

Thin, flat hand/wrist or ankle/foot nevus:
No good solution here as no good technology for scarless removal of this type of nevus has been found yet….Perhaps it will lighten with age. Most nevi do lighten, although it can take 20-30 years.... Only a very few darken with age. The foot will often be covered, so not such a cosmetic problem as the hand. Since normal durability, movement, and tactile perception are so important in the hand and foot, perhaps a “wait and see” attitude might be best. Hands and feet do a lot of hard, abrasive work over a lifetime (think of feet in hiking boots, hands refinishing furniture) so avoid split thickness skin grafts and any treatment that thins the skin. Avoid using grafts at all if possible as they numb the skin and a lifetime of burning oneself in the dishpan and bathtub gets irritating… Maybe a new treatment will come along over time, maybe laser or chemical peel can lighten it later on. As the chance of cancer in an extremity nevus is very low, the risk of waiting is minimal. For now, removal would be high risk/minimal benefit.

Little nevus girl with warty, oozing scalp nevus:
Well, this needs some surgery, no doubt about it.... Best option most likely is scalp expanders to try to remove the nevus while increasing the chance of saving her hair at the same time.... Wearing wigs over a lifetime is a huge hassle and a huge cosmetic problem, so the less baldness from the treatment, the better—and all treatments have a risk of baldness, hair growing up rather than down, etc. This would be high risk with high benefit….

Thin scalp nevus w bicolor hair:
Consider leaving as is. The cancer risk is minimal and the nevus may fade over time, as about 1/3 seem to do. It is easy to monitor, just thread thru hair....and feel carefully during shampoos! And cosmetically, this is probably hardly noticeable. High risk/low benefit for removal.

External ear nevus:
No good solution. Very visible, but no good treatment exists to remove at present. Very difficult to change a chocolate ear into a vanilla ear....High risk/low benefit.

Medium to large giant bathing trunk nevus, thin and flat:
Consider leaving as is.... Risk high and benefit minimal as cannot be adequately removed by any method presently known. Where does the normal skin come from??? There isn’t any. Would require huge numbers of major surgeries, lots of scars, high chance of complications, etc. This was me, and I did have 5 useless surgeries with complications…. Some surgeries are useful; some are useless. Anything that involves years of treatment, miracle cures, medical comas, years of bandage changes, too many surgeries (our record is 200 in a nevus kid!) etc, etc, is all too high risk for unproven benefit in my book. Turns a nevus kiddie from a bicolor person into a chronically sick kid and results in lots of family stress, marital stress (my parents argued constantly about my surgeries-mom pro and dad anti) and neglect of the other siblings. My older brother was jealous and mean to me for 25 years because of the attention (negative, but still attention) I got with the nevus, until he got older and more mature and realized the nevus wasn’t my fault. High risk/low benefit. Consider leaving as is. If you’re given lemons in life, then make lemonade!

Small bathing trunk, thin and flat:
This is a toss-up. Might be worth leaving as is. Might be worth a few major surgeries, but leave genital area alone unless you want to ruin a person's sex life because of scarring.… And give up quick if the surgeries aren’t working….

Bathing trunk or torso nevus with large lipomas (fatty tumors) or other tumors, obviously misshapen even thru clothes:
High risk/reasonably high benefit to try to “trim” the nevus. May be worth a try. Keep in mind most other cases like this had a huge blood supply and bled a lot, so the surgery is dicey and may fail. Several nevus persons nearly bled to death before the bleeding could be stopped and a couple others had bad complications in healing.

Shin nevus:
small enough, with “normal” skin available, worth removing with full thickness skin grafts from expanders in the thigh...color match and hair pattern match would be reasonable. Risk moderate and benefit high. Could also leave as is, as cancer risk is minimal and usually covered by clothes. Moderate risk/good benefit.

Whole arm or whole leg nevus:
no good solution, as expanders generally don’t get enough blood supply to work well here, esp. toward the lower part of the arm or leg. French surgeons have pioneered a method of removal that involves expanding the skin of the abdomen. The arm or leg nevus is then removed and the expanded abdominal skin is placed over the wound while still attached to the abdomen...called a pedical flap. The arm or leg is then sewn down, so it cannot move for a month or so. After the skin has healed enough and "taken," it is cut loose from the abdomen. Not an easy procedure and there will be some scarring at both places. Seems to work best for young babies with medium-sized arm or leg nevi who don't care if their arm or leg is sewn immobile for a month or so...Might wait and see, maybe even easier new treatments will come along... Any method now known involves many surgeries and quite a bit of scarring, risks loss of function of arm or leg, esp. at shoulder, elbow, hip. Laser doesn’t work well, but could improve with time, although “riling” the nevus up with the laser burn is a potential problem. Also, the arm and leg, like the hand and foot, needs durable skin over a lifetime in order to lift weight, carry boxes, play sports, etc, etc. Expanded skin can get fragile. So removal here brings lots of risk and medium benefit... Better a white baby with a black arm or leg than a white baby with an arm or leg that doesn’t work well. These can be covered a good bit of the time to decrease the strain of “showing.” High risk/medium benefit unfortunately with present treatments.

Facial nevus:
most worth a try, as risk is high, but benefit may be very, very high... The strain of “showing” all the time and of being labeled “the kid with the birthmark” is wearing to the max. But need a good surgeon, to avoid getting scarring with eyes pulled out of place, eyes that won’t close after surgery, eyebrows tipped, etc, etc. Might give up and wait for better treatments after a reasonable number of failed major surgeries.... If there is no good surgeon around, better to do nothing until one appears, as one can always surgerize, but cannot unsurgerize. The cancer risk is minimal and botched plastic surgery of the face is hard to fix. The most difficult of all nevi cosmetically, but minimal risk of cancer, thank goodness. High risk, high benefit.

Large torso-neck-shoulder nevus:
probably better off left as is.... where will the “normal” skin come from?? There isn’t any. Too many major surgeries for minimal benefit... Too high risk of frozen neck or shoulders afterward from scarring. Too many surgeries, complications, infections, etc. Maybe a new treatment will come along. Can be covered a good bit of the time… And there are worse things in life than discovering life through an intact torso/BTN, like being quadriplegic for example….

Giant nevi with symptomatic NCM (seizures, developmental delay, brain malformations, etc, etc):
High risk/low benefit. May not be worth putting the nevus kiddie thru all the trauma of surgery, especially if they end up being one of the few who die anyway, decreasing the quality of life that we nevus people may have in small quantity anyway…..

Also nevus parents should not always listen to us nevus kids when we say we want surgery. Nevus kids and teens will do nearly anything to be like all the other kids, regardless of the risks. So we will often ask for and have surgery done even if it isn’t in our own long-term best interests. (We can’t think long-term at that age! This is why our parent have to make a good risk/benefit analysis for us.) We’ve even had nevus teens try to sand their nevus away with sandpaper, including me, a version of home-made dermabrasion! Also at that age, we like scars better than a nevus because being scarred is socially more acceptable than having a nevus. I lied numerous times to people about my nevus as a kid. Since I had lots of scars, I would say I was burned rather than that I was born with a birthmark. Most weren’t outright lies. People would ask, “What happened to you? Did you get burned?” and I’d nod my head "yes." This is because any little girl can get burned, but little girls with birthmarks are “marked” by the devil, as several kids and adults had the gall to tell me throughout my childhood!! It was not until I was an adult that I realized that anybody can be born with a birthmark. Why not me? And thinking nevus kids are marked by the devil is totally stupid.

I wish I could turn back the clock and tell one old lady, in particular, who came over and tapped me on the shoulder (an assault!) and told me I was marked by the devil that she herself was a stupid, ignorant old fool! I was about 25 years old at the time swimming laps in the pool in a regular swimsuit. I started crying and hung my head in shame, which just egged her on even more…. She was rotund so I should have taken aim at her Achilles heel and told her she was just a big, fat, stupid butterball. Everybody has an Achilles heel, even "normals." I’ve found that usually the name calling stops when the name callers are given a dose of their own bitter medicine. That certainly teaches them some empathy in a hurry! Being marked by the devil is what ignorant people thought way back in the Dark Ages, when many nevus babies were killed—probably smothered at birth by the midwife to spare the mother the ”shame”….. all because of a little glitch in skin development… so sad when we can actually have a better life than “normals.”

As we nevus people get older, we realize that the scars can be worse to deal with over a lifetime than the nevus would have been, as in my case. But by that time, it is too late to unsurgerize……. So we depend on our parents and the doctors to do a good risk/benefit analysis for us while we are too young to do it ourselves. By the way, for a fascinating explanation of the possible cause of giant nevi, check here: possible cause found

Anyway, we have been able to develop all this info thanks to the help of many nevus kiddies and parents over the years…many of whom, including me, were guinea pigs for those who will come after us…. Of course, this information is all of a general nature and not to be used to make any individual medical decisions. Each person with a nevus is different and any treatment/nontreatment must be individualized by our own personal doctors. We must all check with our own personal physicians for any and all medical advice, of course.




FREQUENTLY ASKED QUESTIONS:


 WHAT IS A NEVUS?   Nevus (pronounced knee-vus), a Latin word meaning "birthmark," or "mole," is a general term for a congenital mark on the skin.  The word may also be spelled "nævus ." Mole is Latin for "spot."  Congenital means "born with." Nevi (pronounced knee-vi) is the plural of nevus.  Congenital nevi are moles present at birth.

 WHAT ARE MOLES?   There are 2 types of moles:  congenital and acquired.  Most babies are born without moles.  With time, small moles start to appear. By age 20, most people have from 20-40 easily visible moles scattered over the body.  These moles are "acquired" during life and are usually less than a pencil eraser in size.  Only a few babies, about 1 in 100, are born with a mole, the congenital nevus.  These can vary in size from being less than 1/4 inch to covering almost the entire body, the so-called "giant congenital nevus."  Other names are "bathing trunk nevus" or "garment nevus" depending on the location on the body.  Large nevi are defined as greater than 8 inches (20 cm) in diameter in adulthood or 3 inches (8 cm) in an infant or covering a large portion of a particular body area such as the face or the foot.  Nevi vary greatly in size, shape, surface texture, and hairiness.  The color can vary from light tan to nearly black.  Most are shades of brown.  Some have fine downy hair; many have long, thick, darker, coarser or curlier hair.  Cutting or shaving this hair will not increase its growth.  Some have a permanent "goose bump" appearance because a tiny muscle, called the piloerector muscle, is greatly enlarged.  This tiny muscle causes the hair on a person’s skin to stand up with exposure to cold. 

 HAVE SOME BABIES ALWAYS BEEN BORN WITH MOLES?   Yes, as far as is known. The first possible written reference to a giant nevus may be the Book of Genesis in the Bible. Genesis 25:25 describes the birth of Isaac and Rebekah's twin boys, Esau and Jacob. We don't know if they are identical or fraternal twins. By the description, it is possible that Esau (a word similar to the Hebrew word for "hair"), the firstborn, had a giant hairy torso nevus, possibly extending to the extremities. Occasionally giant nevi can look reddish at birth... 25:25 "The first came out red, all over like an hairy garment; (some references say "cloak" or "mantle") and they called his name Esau." Here's more on the story of Esau.   The first medical description of a giant nevus was in 1861, by a pathologist named Karl Rokitansky. Rokitansky was born in Czechoslovakia but lived in Vienna most of his life.

 WHY DOESN'T NEVUS SKIN SWEAT?   Usually a person does not sweat in the area of a large nevus as the sweat glands are abnormally formed or few in number.  People with a nevus will usually sweat much more in the uninvolved skin in order to maintain normal body temperature.  The normal skin will be cool and drenched with sweat while the nevus skin will be hot and bone dry. Scarred skin usually will not be able to sweat and self-cool either. Those with a giant nevus may need to drink more fluids in hot weather than those without a nevus to avoid overheating. Becoming acclimated to summer heat by living AC-free year-round may also help prevent overheating. Those of our members who live AC-free and are heat acclimated seem to tolerate strenuous sports and severe heat without any difficulty at all. This helps the environment by saving electricity and is something the whole family can do! A few members who have huge nevi, such as 75% body coverage or more, must take extra precautions to avoid overheating as there is just so little normal skin available that is able to sweat and self-cool.

 WHY DO AREAS OF NEVUS SKIN LOOK THINNER THAN NORMAL?   A giant nevus often lacks subcutaneous fat, a thin layer of fat just under the skin that pads and smoothes and rounds the body everywhere.  Because of this, an infant or adult may look "thinner" over the area of the nevus.  Very rarely a nevus kid will actually have less flesh underneath the nevus, with atrophy of the arm or leg so the area looks shrunken. They may also look slightly misshapen. Smaller nevi often appear inside a larger nevus.  Different nevi penetrate the skin to different depths.  If the nevus is thin, the skin is also thin, fragile, and easily "pinched."  If the nevus is thick, the skin may be lumpy or folded or bulbous-looking.  Occasionally some people will have soft-tissue tumors or growths underneath the nevus, often lipomas (fatty tumors) or neurofibromas (nerve tumors), giving the skin a very bumpy, folded appearance. Nevus skin is easily damaged and doesn't seem to heal as well as normal skin.

Here are some members' experiences:

"I can tell you the experiences I've had with surgery on or near the GCN. In 1994, I had a mass removed from my left hip, upper left thigh and pelvic area. All areas were stapled (bleh), but for some odd reason, the hip & thigh healed like champs, however, the pelvic area split, developed what was damn near a crater and became infected. The infection was quickly cleared up, but the crater remained. Swear to God, it was like a hole down to the muscular wall. It had to be damn near the grossest thing I have ever seen. I know what finally cleared it up for me was packing the area with cotton (soaked in something, can't remember what), steri-strips to hold the skin together and a dry bandage over all of it. The scar is much worse than the other areas, but all in all it's not too bad, considering. What was supposed to be a 2 week healing process became 8 weeks."

"When I was about 23, I had an operation to remove some fatty benign tissue from a nevus lump in my hip, a lipoma. The surgeon predicted 3 days in the hospital, and I ended up with 30 days! I don't know if my nevus skin is thinner than that of others, but it definitely has almost no elasticity, and a very loose connection to the underlying tissue. Thus, the lymph which the body sends to a distressed site had no counter-pressure from the skin at the incision site. I was sent home once, and when I had a fit of anger at my dad, pounding my fist on the table declaring "I am not sick", (because I wanted to go out with my friend), PING, my wound bursts open and I feel the blood and fluid wet my clothes. So I ended up being driven back to the hospital. That time they stuck a rubber tube with hole (aspirator) into the wound and I remained attached to the sucking machine for days and days. That was my last attempt at an operation on my BTN and I am now 60. It was pure vanity anyway, as all I wanted to accomplish was to even out the lumpy lipoma-hipped side with the totally flat hipped side so it would be less noticeable underneath my clothes."

 WHY DO MOLES APPEAR?   The cause of congenital moles may have recently been discovered! Researchers have known that the skin and nerves of a fetus develop from the same primary cells of the body, which are called neuroectodermal cells, between the 8th and 24th week of pregnancy.   Researchers think that a body protein called HGF/SF (hepatocyte growth factor/scatter factor) seems to be responsible for encouraging these neuroectodermal cells to develop, migrate, and "scatter." In those of us with a nevus, it seems that we have too much/wrong type of this body protein HGF/SF in some,not all,of our cells, so we develop extra pigment and abnormal skin cells called nevus cells. These cells "scatter" around, so we have nevi "scattered" all over us. If we have lots of nevus cells scattered on the skin, there seems to be a good chance that we have the same cells scattered in the brain. That may be why some of us develop nerve symptoms like hydrocephalus, "water on the brain," melanoma, "skin cancer in the brain", and neurocutaneous melanosis, "nevus cells in the brain." A Japanese researcher recently developed mice with too much/wrong type of the body protein HGF/SF. Guess what? The mice developed giant pigmented nevi with satellites! Isn't THAT fascinating? They are quite cute, these mice with their nevi... And they have a higher risk of melanoma skin cancer, just like us!

Abnormal HGF/SF seems to develop in certain body cells accidentally, called spontaneous autosomal dominant genetic mutations. These mutations aren't hereditary. The only way 2 children in the same family could both develop a nevus is if each one independently mutates to develop abnormal HGF/SF. Of course, that happens very, very rarely, once or twice in our whole group. On a rare occasion, a few relatives of a person with a nevus will also have a nevus. This is because both independently mutated to develop the abnormal body protein HGF/SF. We have about 5-6 families in our 1,000 families who have a relative with a nevus. At the moment, there is no known method of preventing abnormal HGF/SF from occurring.  Many of our parents have wondered if something they did or did not do during the pregnancy could have caused their child to be born with a giant nevus, but we have not yet discovered any common finding. It appears to be just one of those things that happens by chance. In the grand scheme of things, there are certainly many, many worse things that could happen to a person. Most of us are just thankful we are able to enjoy life as much as we can. We've learned to say, "This could have happened to anyone. Why not me?" instead of asking, "Why me?"

Congenital nevi usually form in the baby in the womb between 2nd and 6th month of pregnancy.  A nevus is often symmetrical around the spinal cord because the spinal cord and skin develop together from those same early neuroectodermal cells. A very few cases of large nevi appearing after birth, called tardive nevi,  are known.  We have one member who was born "normal" who developed a rather large bathing trunk nevus by about 6 months of age. Nevi can appear in either sex, in all races, and in all areas of the body.  They are most common in Caucasians and least common in Africans, with intermediate frequency in Hispanics and Asians. It seems the darker the normal skin, the less the risk of a giant nevus. They are not contagious.  More girls than boys appear to be affected, about 1 1/2 girls to 1 boy.  Several instances of identical twins, one with a large mole and the other without, are known.  Identical twins share the same genes, the same environment, but not the same HGF/SF body protein!   In our support group to date, only a couple families have 2 members with a large nevus. We have a great-aunt and grand-niece, each with a back nevus and 2 brothers, each with a torso nevus. So far, no one with a large nevus has yet had a child with one in our group.

 HOW COMMON IS A NEVUS?   Nevi measuring 8 inches (20 cm) or more at birth occur in about one in every 20,000 children.  Giant congenital nevi involving much of the body surface are less common, possibly around one in every 200,000.  Many people with a larger nevus will have anywhere from several to hundreds of smaller "satellite" nevi scattered throughout the body.  Most children will also have satellite nevi that continue to appear or "pop out" for years after birth.  We now think this is because the abnormal body protein hepatocyte growth factor/scatter factor (HGF/SF) is overactive or malfunctioning and continues to "scatter" nevus cells over the body. We had one member who continued to "pop out" large inch-wide or more satellites up until her death at age 29 of brain melanoma. It seems that a person who continues to pop out lots of large satellites has more abnormalities in the protein HGC/SF than those who don't. We have only had one person, who has a giant back nevus, who developed melanoma skin cancer in a “satellite” nevus. Since this has only happened once, removal of satellite nevi is often cosmetic only and is not always successful. The pigment may "seep back" after removal. Coarse hair sprouting from a satellite persists even after the satellite is removed because the hair root is very deep. Many members who have had satellites excised surgically are left with a fragile, tender, lighter brown, seeped-back scars sprouting hair instead of a durable, less tender, darker brown satellite. Whether one or the other is better often turns out to be personal preference.

 WHAT ARE MELANOCYTES?   "Melano" is a Greek word for black.  "Cyte" means cell.  Melanocytes are special cells that give human skin its color.  They are thought to come from an area near the brain and spinal cord in the developing baby and to migrate to the skin before birth under the influence of the body protein HGC/SF.  Melanocytes help protect the skin from sunburn by making the pigment melanin, which causes a person to tan.  A nevus cell is an abnormal type of melanocyte.  Congenital moles that are like "beauty marks" are brown because they contain abnormal melanocytes which make extra brown pigment.  These brown birthmarks are called "congenital melanocytic nevi" or "congenital nevocytic nevi."

 WHAT IS NEUROCUTANEOUS MELANOSIS?   In an unknown number of persons with giant moles, possibly one in three by MRI findings, nevus cells also occur in the brain and on the spinal cord. The same body protein called HGF/SF, which causes nevus cells in the skin to grow and scatter can cause similar cells in the brain to grow and scatter. This presentation is called neurocutaneous melanosis or NCM.  It may occur and not cause any symptoms for years, perhaps a lifetime, or it may present with severe and worsening headaches, vomiting, seizures, or other neurological symptoms similar to a stroke. The latest research shows that about 1/3 of people with giant nevi also have detectible pigment via MRI in their brains. About 1/3 of those develop symptoms. More than likely, all of us with a giant nevus have pigment in the brain, but at a nondetectible level. After all, both the skin and the brain develop from the same fetal cells called the neuroectoderm. Both the skin pigment and the brain pigment seem to fade with age, occasionally fading away to normal.

Hydrocephalus (excess "water" on the brain due to blockage of flow out of the brain) may develop if the abnormal cells in the brain overgrow. The "water" is actually cerebrospinal fluid, a special fluid that bathes the brain and spinal cord. The outflow blockage causes very high pressures to develop in the brain. These high presssures cause severe and worsening headaches, nonstop and worsening vomiting, inability to keep any fluids down, and seizures. Hydrocephalus in general is much worse than run-of-the-mill vomiting from stomach flu or bad headaches from stress or flu. Usually a person is very sick and getting sicker by the minute with no improvement. Parents often have a difficult time deciding whether or not to take their child to the doctor if vomiting or headaches occur, especially as doctor visits are very stressful to nevus people, and unneeded ones for self-limited stomach flu or stress headache even more so. The less doctor visits over a lifetime for us, the better. Nevus people already spend way too much time in their lives "doctoring." Even so, severe and worsening symptoms need evaluation. Hydrocephalus is fatal unless treated within a day or so. This is because the fluid in the brain is replaced every 8 hours, so if the "drain" is blocked for even a day, the pressure back-up is very severe. Hydrocephalus is usually diagnosed with an MRI and can be treated with a shunt surgically implanted from the brain to the abdomen, called a ventriculo-peritoneal or V-P shunt. A few of our members have worn these shunts for years. They do need to be revised as a child grows and a bigger, longer tube needs to be inserted. Shunts can also rarely get infected.

Severe neurocutaneous melanosis where the nevus cells continue to overgrow with or without associated melanoma is often fatal.  Treatment is experimental. Anyone with a large congenital nevus who develops severe vomiting and/or headaches which continue to worsen should get a medical evaluation to check for NCM. We also have a small group of members who have only satellite nevi and no giant nevus. This group is at high risk of developing symptomatic, fatal NCM, about 1 in 2. That still mans that 1 out of 2 with just satellites seem to do fine. Fortunately, all of this happens only rarely in our group.

Here are some members' experiences:

"Your website has been a wonderful source of support and information for us in past years. Our daughter was born in September, 1997 with small satellite nevi on her torso and legs. She did not have a giant nevus. Within 4 months, she showed symptoms of hydrocephalus and was operated on twice and implanted with a VP shunt. Shortly thereafter, she was diagnosed with NCM. As parents, we sought treatments for her at various children's hospitals and cancer institutes across the country. Most oncologists had never heard of NCM. The very few who had some knowledge had either very minimal practical experience or had never actually treated a patient with NCM before. We received advice for all forms of radical treatments, most with extremely negative side effects. Fortunately, we did manage to find an extremely caring group of physicians. They helped us understand the condition and select the most caring and appropriate course of treatment for her. Most importantly, the treated her with dignity and avoided all unnecessary and experimental treatments recommended by others. During those times, my wife and I consulted your website several times. Your website is both educationsal and resourceful. Many thanks. We had our beautiful daughter Alana for 18 months, nine months before she was born and nine months after. She lived a happy life, was loved by many, and touched the lives of all who came to know her. She died of NCM peacefully in our arms in her own home in July, 1998."

"I would like to join your group. I was born in 1960 in Texas, the youngest of 7 children and the only one with this disorder. I am now almost 44 years old. I have nevi covering almost all of my body. Different sizes and shapes from light brown to almost black on some. Most have very coarse hair. I have them from the top of my head to the bottoms of my feet. I never knew what disorder I had. I just called them birthmarks or angel kisses. The medical people that saw me over my lifetime never gave me a diagnosis. They only said they wish they could help or tell me where to find help. They never did. I came from a poor family so we never had money enough to find help. I joined a support group for neurofibromatosis in 2000 but no one looked like me, so I figured NF may not be what I have. I met someone on the Internet about a week ago. As we chatted I sent them a picture of myself. They said they had a link that might help me. I went to it and from there found a link to your site. I have never seen anyone or pictures of anyone with nevi like mine til I saw your site. This website is a GODSEND. After almost 44 years, I have some questions answered and I have found out what I have...."

 IS MAGNETIC RESONANCE IMAGING HELPFUL?   MRI’s are occasionally obtained to check for melanin pigment in the brain and spinal cord. MRI is a wonderful, relatively new technology where waves generated by large magnets will take a clear picture of the inside of the body of someone lying in a special small tube. Nevus people with neurological symptoms like worsening headache and vomiting need to have pictures taken of the inside of their brain by an MRI. Those with seizures need to have repeated MRI's done periodically also. For those who need them, they are a wonderful tool!

But getting an MRI is controversial in nevus people without symptoms, as a normal MRI doesn’t mean it will stay normal, and an abnormal MRI doesn’t mean someone will develop symptoms of NCM. We have had both situations in our group. Doctors tend to order lots of MRI's because they don't want to miss anything and they don't have anything else more useful to suggest, unfortunately for us. A few of our younger members have had three, four, or five abnormal MRI's spread over a year or two so far. Naturally, the abnormal MRI results in the normal child caused the parents involved a lot of sleepless nights and unnecessary anxiety worrying about what might happen. None of us can do anything about what might happen anyway! Sedation for the MRI in young children has resulted in seizures in several members. We have had cardiopulmonary arrest (nearly dying!) occur in 2 members from MRI complications. Young children who cannot be relied upon to lie perfectly still for 30 minutes or more (And that's all of them, isn't it?) need to be sedated because any movement will blur the images from inside the brain. Several of our members have used several different sedatives. The sedative may also wear off early, causing the child to "wake up," move around, and ruin the MRI. Children can also rarely develop severe allergic reactions to the sedation. Some people also develop severe anxiety when in a tiny pipe like an MRI tube if they are susceptible to claustrophobia.

Insertion of the IV line for the sedation can be extremely traumatic for young children. Multiple needle sticks may be necessary. The child will need to be tied down, usually on a "papoose" board. Whoever holds the arm down for the needle stick needs to hold very, very tight, almost a death grip, because if the child jerks the arm 1/16th of an inch, the IV will probably be lost and the vein punctured or "blown." If the needle stick is difficult, the child will scream continuously, turn bright red, and be covered with sweat. This is the normal "fight or flight" reaction of a person who feels their life is in danger. Naturally, a kid getting stuck with a needle feels their life is indeed in danger. Sometimes numbing medicine can be used to dull the needle stick, but this occasionally causes slight skin swelling, which makes it harder for the person inserting the IV to see where the tiny vein is located. Needle sticks can also rarely cause nerve damage, infection, formation of a blood pocket called a hematoma, and bruising. IV's can rarely cause blood clots, phlebitis (infected veins), pulmonary embolism (blood clot in the lungs), air embolism, catheter-fragment embolism, sepsis (blood poisoning), and compartment syndrome (circulation cut off when IV is clogged). As those of us who have had them can attest, IV insertion can be a nightmare! The less of those things over a lifetime, the better...

MRI's to look for abnormal pigment in the brain must be done on very high quality MRI machines. For a child, certain changes must be made in the picture-taking compared to an adult. We have had members who have had MRI's on low-quality machines or on machines geared for adults who then needed to have the MRI repeated with a better machine and geared for children. Now that was very frustrating. Here is some information on appropriate MRI technique for nevus kids: technique     MRI's are most useful in very young infants, under the age of 2-3 months. After a baby is more than 3 months old, the growing brain "covers up" some of the possible pigmented areas and the MRI may not be accurate. MRI's are also expensive, about $1,000 to $2,000 or more. That is a lot of money to waste if they are not needed, money that may be desperately needed for something more crucial later on. And one always needs to remember that for the medical/industrial complex, a nevus kid is almost like an ATM machine! MRI's also take quite a bit of time, most of a day from leaving home to arriving back afterward. That is a lot of time to ask a nevus person to sacrifice in doctoring over a lifetime, if there is no clear benefit. As more and more people self-pay for medical care, and the US becomes more and more bankrupt, we find that more and more MRI's simply aren't cost-effective. A family can buy a lot of groceries or gasoline for $1800! Many of the older nevus adults have never had one. In our guesstimate in the group, about 10% of MRI's are useful and about 90% are more or less wasted. And for a nevus kid, less is often more! Less medicalizing leads to a more normal life.

One important use of an MRI, however, is to determine whether someone with a medium-sized nevus, like half a back nevus, who is contemplating total excision, should actually go through with the surgery. If the MRI showed pigment deposits on the brain, then the excision of the external skin nevus would be less beneficial, as even if the nevus cells on the skin are completely removed, the ones in the brain still could never be removed anyway. A person with an abnormal MRI might reasonably forego all the risks and stress of excising the external skin nevus in that situation.

A second important benefit of an MRI is that very rarely other brain abnormalities are found on the MRI that can be treated. Whether this rare benefit justifies the hassles, stress, and expense of an MRI would be up to each individual. A third important benefit of MRI is the possibility of participating in medical research and furthering medical knowledge in order to help nevus babies in the future. Overall, MRI's have a few pros and a lot of cons and each nevus person and their parents and personal physicians(s) must decide whether to go through the hassle of having one or not on an individual basis.

Here are some members' experiences:

"Our son had many MRI's throughout his first year. He was diagnosed with NCM on an MRI shortly after birth, and confirmed on MRI at about 2 mos. I don't think he had any MRI's that showed exactly the same deposits. The doctor we talked to said they can look different on different machines. We started out at a local MRI center and ended up going to a University hospital with better equipment. Also the contrast was used for some and not for others. I think that can make them look different too. They would usually do a scan without contrast and then administer the contrast and repeat the scan. On his first MRI's they thought they saw about 4 pigment deposits in the brain and a year later they thought they saw around 12, but they also said some of the original ones had regressed and weren't as visible. Along the way he had MRI's where they said there were more or less deposits, it was never very definite. Our son hasn't had an MRI in 4 years. We decided that we were all getting way too stressed about them when he had no symptoms of anything, and it was also difficult to keep putting him through them."

"Our son does not like closed spaces, being forced to hold still, or needles. So, what happens? They strap his head in a box, stick a needle full of synthetic iodine in his arm, and jam him in a tube and say "hold still for the next 45 minutes." But, he DID it. He was trembling like a leaf when they slid him out of the tube. Bless his heart--he started crying and said "I've had an itchy nose for about a half-hour." Also, something that the hospital has developed which sounded neat and had excited our son going into the MRI session is a set of earphones and goggles that the patient can wear during the MRI to watch a favorite video. So, our son brought in a video and was anxious to get going. But, they put the goggles on crooked, so the image of the movie was fractured and blurry, plus the heavy goggles pinched one nostril throughout the entire 45 minute session. He took their "command" to stay still SO seriously that he never called for help to adjust the goggles so that he could be comfortable."

 WILL CONGENITAL MOLES CHANGE?   Congenital moles will hardly ever disappear on their own, although there have been a couple reported cases of that happening.  We think that happens because the body's own immune system recognizes that the nevus cells aren't normal and "zaps" them in the few people where the nevus fades away. Now we need to figure out how that happens so that everyone can "zap" their own nevus and have it fade away. Moles usually grow in proportion to body growth.  A congenital mole's color may stay the same, lighten slowly, or darken slowly over time.  The great majority seem to lighten to a beautiful medium cocoa by age 40.  Rapid changes in any mole, non-healing sores, or new lumps require medical evaluation to check for melanoma.

 WHY ARE NEVI IMPORTANT?   Nevi have no function.  However, they are important because they can sometimes lead to a potentially deadly skin cancer called malignant melanoma.  Even more infrequently, melanoma can occur in the brain or spinal cord of those with neurocutaneous melanosis, even after external skin nevi have been removed. NCM also often occurs in those with only satellite nevi and no giant nevus. For some unknown reason, these particular nevus children seem to have the highest risk of complications and death, about 1 in 2. It seems that the abnormality in their body protein HGF/SF is the most abnormal of all, causing scatters of nevi all over the skin and spinal cord, which leads to more complications.

 WHICH MOLES MAY DEVELOP MELANOMA?   Most moles are harmless, but some moles do have a greater chance to develop melanoma.  These include larger moles, very dark moles, and moles with varying colors. Changes in growth, in color, in surface texture, pain, bleeding, or itching are all of concern.  Any such changes should be evaluated medically if they last longer than 2 weeks.

 WHAT IS THE RISK OF CANCER?   The exact risk of melanoma or symptomatic NCM developing in a person with a large congenital nevus is not known. In our group it is around 2.5% so far in those with a giant garment (torso or bathing trunk) nevus. This means that around 97.5% of body nevus children can probably anticipate living a normal lifespan.  That is wonderful news for parents who may be very worried and anxious about their child's future! Those with a medium-sized giant garment nevus, such as half a back nevus, seem to have less risk of complications than those with giant garment nevi. And so far the melanoma rate for those with a facial or extremity nevus is zero in our group--more great news!  

For the 2.5% who do suffer the loss of a nevus child, a group called The Compassionate Friends offers support in grieving. There toll-free telephone is 1-877-969-0010 and their website is www.compassionatefriends.org. The 2.5% can also look to the parents of the past for support. The death of a child, while very uncommon today, was extremely common throughout all of history. Every parent could expect to lose children in death. As recently as the 1860's, Mary Todd Lincoln, First Lady and wife of Abraham Lincoln, suffered the loss of 3 of her 4 children AND her husband, one by one... Often, whole families would die, leaving only one survivor such as Chief Logan, a famous Native American from what was to become West Virginia, who lost his entire family and all of his relatives. Jim Bridger, a famous mountain man of the American West, went away on a short trip leaving a wife and 3 kids and came back a month later to find them all dead. If the people of the past could survive such tragedies back then, well, so can we now...

When melanoma cancer occurs in a large nevus, it can be at any age, but most often occurs in infants or toddlers.  Pregnancy increases the production of melanin in the body.  In the past, it was thought that pregnancy might increase the risk of melanoma in a woman with a giant nevus. Many of our older women members were told never to get pregnant because of that possible risk.   We have quite a few members, both men and women, who have fathered or given birth to children without complications. So far, only one woman in our group who gave birth developed melanoma during the pregnancy and died of it when the baby was 13 months old. If pregnancy does raise the chance of melanoma, it would be a small but possibly not zero increase in risk.

 DOES MELANOMA OCCUR IN PEOPLE WITHOUT GIANT NEVI?   Yes, the chance of getting melanoma for the general population is 1.5%, 1 in 68 over a lifetime.  This rate has been rising rapidly. Our chance as nevus people with a garment nevus of getting melanoma is 2.5%, about 1 in 40. (The risk is much lower for those with an extremity or facial nevus.) A risk of 1 in 40 is only about double the risk of the general population. This is wonderful news to the nevus adults who were often told they would surely die young! The chance of dying from any cancer is about 40% over a lifetime. That means 4 of every 10 "normal" people alive eventually die of cancer. Having a giant nevus may raise that risk to 41% over a lifetime, which is not a big difference.

The chance of dying in an auto crash is 1 in 5000, but this doesn't stop people from speeding all the time. The chance of dying of lung cancer is a very high 1 in 15, but you see people puffing away on cigarettes everywhere, especially kids.... Melanoma incidence has increased about 1800% over the last 60 years.  The cause is unknown.  Some authorities feel that intermittent severe sun exposure, coupled with the current fashion of wearing light, skimpy summer clothing, especially in childhood, may play a role. 

Most doctors recommend that everyone avoid excess sun by wearing broad-brimmed hats, sunglasses,long-sleeved shirts, long pants or skirts, gloves, and especially avoiding sunburns by staying in the shade.  A century and a half ago in the USA, it was common for everyone to avoid excess sun exposure, no one wore shorts, and everyone wore hats and long sleeves, which may account for the lower rates of melanoma back then. Today, instead of going swimming at 1 PM, one can choose to go at 7 PM. The use of sunscreen is controversial because it may prevent sunburn and encourage people to stay out in the sun longer than they would without it and thus paradoxically increase their risk of skin cancer. Since the actual protection provided by sunscreen is not known at present, one is probably safer using thick clothes and shade and drinking plenty of fluids to help prevent sun-damaged skin and skin cancer and yet still have lots of fun outdoors throughout life. Avoiding excess sun exposure also has the added bonus of helping to prevent age-related skin wrinkling. That is one reason why nevus adults who have avoided excess sun for years look younger than their peers!

It is possible to purchase special sun resistant clothing (Sun Precautions 1-800-882-7860, Solar Protective Factory 1-800-786-2562, www.alexandme.com, www.solartex.com, www.sunprotectionshop.com, and others). These are stylish but rather expensive to purchase.  Very fashionable anti-sun parasols can be purchased at www.parasol-shop.com.  Floppy cotton sun hats can be ordered through Flap Happy© at www.flaphappy.com or by e-mailing custcvs@flaphappy.com or calling 800-234-3527.

Some have wondered in the past if totally avoiding the sun in those with a large nevus would eliminate the risk of melanoma, but this is not true.  There are cases of melanoma occurring in a mole located in the armpit, which is a part of the body that receives virtually no sun exposure ever. Sun exposure is a part of the cause of melanoma, but not the whole cause.  A mole that is changing is still the strongest clue for melanoma.  About 80% of people diagnosed with melanoma have stated that it began with a changing mole.  No one knows why moles start changing.  Those at higher risk for melanoma have large numbers of moles, have dysplastic (atypical and irregular) moles, or are fair-skinned, such as people of Eastern European, British, or Scandinavian origin.  Moles that undergo unusual changes in shape, color, size, elevation, or symptoms need rapid medical evaluation.

 IS MELANOMA CURABLE?   If found early and surgically removed, it is often curable.  If the melanoma is ignored or found late, it can be fatal because cancerous cells may have spread through the body. There is no known way at present to prevent this from happening. Even supposedly-total excision of a giant nevus will not remove that danger, as it is well known that melanoma has occurred in people whose nevus was supposedly-totally removed. This may be because it may be actually impossible to "totally" remove every last single cell of the nevus. And the (usually) extensive surgeries required to nearly totally remove a nevus can cause other severe, sometimes nearly fatal complications. At present, many treatments for melanoma in someone with a nevus are experimental. Of 15 members with a garment nevus who have had melanoma in our group, 10 are still alive, which is pretty good news. Thank goodness most of us never develop melanoma!

 DOES SURGICAL REMOVAL LOWER THE RISK OF MELANOMA IN THOSE WITH A GIANT NEVUS?   No one really knows for sure. We have had nevus people in our group die of cancer after their giant nevus was "totally" removed--or so it was thought--and we have had nevus people die of melanoma with a giant nevus left as is, and we have had nevus people die with a partially excised giant nevus. In our group, melanoma usually occurs in nevus babies and toddlers, who die before they have had time to get their nevus removed. Melanoma also occurs in those who have a really huge giant nevus covering a large portion of the body, so huge that it is impossible to remove using any treatments available today. Of the 15 people in our group who have died of melanoma, only one could possibly have been saved with surgery to remove his giant back nevus. So the actual benefit of removal to prevent melanoma skin cancer is probably minimal... In some people, removing or partially removing a giant nevus may actually RAISE the risk of cancer by "riling" up the small amount of nevus cells left behind or by decreasing the immune system with the stress of repeated surgeries and thus letting precancerous cells grow wildly and turn into cancer. Melanoma has occurred in several people who had their nevus partly removed via surgery, dermabrasion, and laser. Based on our member statistics, the benefit of surgery in decreasing melanoma risk is probably minimal for most of us.

 WHAT IS THE BEST TREATMENT FOR CONGENITAL MOLES?   There is none--yet. What is needed is the discovery of instant, natural, scarless, artificial skin, complete with oil and sweat glands that work and that nice padded fat layer underneath it all! "Pouf, it's gone!" as one of our members terms it. And we need to discover a way to remove nevus cells from the brain and spinal cord. An alternative but satisfactory treatment would be to encourage the body's own immune system to realize that nevus cells are not normal and to "zap" them, causing the nevus pigment to fade away. There are at least 5 reports of this happening in nevus people naturally. There must be a way, as yet undiscovered, to enable that same situation to happen in all of us.... Nevus people would still have skin with different texture, no fat pad, clogged sweat glands, etc, but the color would be normal and the cancer risk hopefully less, including in the brain... Yet if/when all that ever happens, some of us nevus adults will be happy yet sad because our nevus has actually shaped our lives in many positive ways. It would be very strange to find out our nevus had completely disappeared.

In any case, treatment must be individualized for each person because each nevus is unique. All of the present treatments have major drawbacks and a person can be left worse off after treatment than before. For this reason, a giant nevus is a condition sometimes better left "as is."  Parents often agonize over whether to surgically remove the nevus or not. It is a very difficult decision to make and must be individualized for each nevus person. Most doctors recommend surgery but it is fascinating to keep in mind that doctors themselves have the lowest surgical rate of any occupational group. They recommend a lot of surgery for other people, but they avoid it for themselves because they are aware of the extensive risks involved. Doctors "in the know" just say "NO!" Also only about one in three doctors actually has a personal physician themselves. And many doctors don't bother to get the yearly checkups and tests that they recommend for the general population... All of that is very interesting, isn't it?

The decision on whether and how to treat a nevus is based on a person's age and health, and the size, appearance, location, and growth history of the mole.  Cosmetic appearance may be improved or worsened after surgery.  All surgery leaves scarring.  For most nevus adults, successful treatment means treatment that passes the "stare" test. This means if one exposed the treated area and went out in public, no one or almost no one would stare. If the result of a nevus treatment doesn't pass the "stare" test, then in general, it isn't a very successful treatment. Unfortunately, surgical excision of external skin nevi will not decrease the risk of internal brain or spinal cord melanoma in those patients who have neurocutaneous melanosis. We have had members who underwent many, many surgeries to successfully remove the entire external giant skin nevus only to die later of brain or spinal cord melanoma. For those of us with a giant nevus, whether it is removed or not, there will always be a low risk of developing melanoma and dying and we and our families need to learn to cope with the fragility of life while living in a society that denies death. 

Here are some members' experiences:

"My thing is.. and my daughter will be 4 on Monday.. that this one part of her scar hurts her really bad...Don't get me wrong... I don't want to do anything that will cause trauma to her. I'm really done with all that. Knowing what I know now, I would have done so many things differently. I just wonder that maybe it would make her more comfortable if the EXTRA scar tissue on the inside was removed. She had a BIG, BIG, BIG, BIG infection after her last surgery. We ended up in an emergency room 1 week after surgery with an infection in her back. Her temp was 104.9 and the emergency room called for an ambulance to take my daughter and I immediately to a bigger hospital. We ended up there at midnight and stayed a week. They put her through every test known to man to try and find an antibiotic that would kill this infection. My daughter went through HELL. After that, we decided that it's not worth it, nor is it fair to her to go through that again. But..... The area of her back that had the infection has some scar tissue (i think) inside the outer scar... it's causing her a lot of pain. She bumps it at least 2 -3 times a day and it makes her cry. So, we're toying with the idea of putting her through another surgery to remove the scar tissue and make it more comfortable FOR HER..."

"Our son is now 10 and when he was little, everyone said that surgery was a must, as not much was know at the time about his "condition." He was born with an upper back and neck nevus and hundreds of satellites. He has had around 39 surgeries and when it is all said and done, 15 or so were because of problems witth the initial surgeries. He has had the last 3 surgeries trying to remove and repair an open, draining wound on his neck which he has lived with for over 3 years (and thousands of bandages). He does not want any more surgeries and we would like to accommodate him, but the scar tissue is so built up, we will probably need to have at least one more to try again to repair his neck."

"Our daughter had a warty, folded, wet, smelly nevus of her buttocks and absolutely needed surgery in that area.

 WHAT IS DIRECT EXCISION?   Smaller nevi can be cut out directly with a knife and the wound edges sewn together leaving a scar.  This is called direct excision.  Often the nevus pigment will "seep" back from the edges of the scar afterward.  Several re-excisions may be necessary. Scars take about a year to heal completely. The redness and swelling take months to disappear. Scars may be slightly tender and slightly numb. Whatever tenderness and numbness is present after one year is usually permanent. Scars can enlarge and overgrow. These are called hypertrophied scars. They can even grow extra flesh. These are called keloids. People of African descent are particularly prone to keloid formation for unknown reasons. Keloids and hypertrophied scars can be treated with steroid cream to shrink them down somewhat, although they can also be permanent. Many of our members have had hypertrophied scars. Keeping scars lubricated, using sunscreen, and avoiding excess sun exposure all help during the healing process.

Here are some members' experiences: "When our son was about 18 months old, he had some big satellite nevi removed, including a big one on his elbow. Even though the surgeon stitched in layers to make sure the huge incision (which wrapped about 75% of the way around the elbow) would hold, he came running through the house, tripped, fell, tried to catch himself with his hands and arms (naturally) and the entire wound ripped open down to the bone. Ironically, this was the same day that the surgeon had removed the cast to protect it. Consequently, our son has a very large, sensitive scar on his elbow that still gives him trouble 7 years later. I believe that nevus skin is just not as strong, elastic, and durable as plain, ol' skin. At the cellular level, it's just very different..."

 WHAT IS SERIAL EXCISION?   Larger nevi in areas where the skin is stretchy may be excised in stages by taking a little more out each time until the entire nevus is removed in a series of operations.  This is called "serial excision."  It is used for smallish nevi on younger children in areas where the skin is still elastic enough to sew the cut edges together.

 DO SKIN GRAFTS HELP?   Cutting out large nevi will leave behind a raw area that is too big to be sewn together and must be covered.  This can be done with a split thickness skin graft from some other normal area of the body, called a donor site. A special machine carefully slices off the top layers of normal skin leaving a thin sheet of skin behind and grafting the thin sheet just sliced off to the raw area where the nevus had been removed. There will be mild scarring at the site where the normal skin was removed. In many of our members, there are no normal skin areas large enough for skin graft donor sites because the nevus is so huge and there are hundreds of satellites present.  The skin-grafted area will have a severe degree of scarring and will be thinner and more fragile than normal skin. 

Most skin grafts heal up to look like severe burns. Cosmetically, one often looks disfigured. One then has to decide if one feels more comfortable "showing" the nevus or the bad scar. Often one simply trades questions from "What happened to your skin? Is that dirt?" to "How did you get burned?" Nevus children often prefer the scar, because it is more accepted by peers to be burned than to be born abnormal. But a scar is often harder to deal with over the years than a nevus, and as nevus children grow up and peer pressure lessens, they wish they had the original, unsurgerized nevus back. Skin grafts--and all types of scars--are usually somewhat tender for life because the nerves to the skin have all been cut and they regrow and re-attach in a tangled manner. Skin grafts also get irritated easily, so excess touching and rubbing may need to be avoided lifelong. Skin grafts should be avoided on the belt line, bra line, and over joints like the hip, knee or shoulder to decrease chronic irritation. Skin grafted areas are slightly numb forever, again because the nerves have been cut and re-attach abnormally. We have had members who have had severe burns on skin grafts on their thighs from sitting on a hot register where they could not feel the heat. Skin grafts get cut and scratched easily because the skin is half thickness or less. The graft doesn't stretch, which can be devastating in the rectal area with diarrhea in the genital area with sexual activity. The grafts are stiff, not pliable like normal skin. They don't sweat either, as the sweat glands aren't grafted. They itch more than regular skin. And it is even irritating to try to scratch a mosquito bite in the middle of a skin graft. If you scratch too hard, you wear a hole in your skin! Because the grafts are so fragile, many of our members always keep them covered and padded with clothes to protect them. Grafted skin is simply not durable enough for daily use!

Skin grafts occasionally heal up too "tight." This can restrict motion of a joint, such as the knee, hip, or shoulder, which increases the risk of premature arthritis in that joint and decreases a child's ability to enjoy sports. Skin grafts involve major surgery, prolonged hospital stays, difficult healing, increased risk of infection, and substantial blood loss. Several members have nearly died of infections after skin grafts. There are several reported cases of melanoma developing underneath a skin graft from nevus cells left behind deep in the muscle. This could also occur with skin expanders and laser. Melanoma has also been known to develop in areas of scarring or chronic irritation. Skin grafts are especially useful for burn victims, where skin-grafted skin is a whole lot better than no skin. But unfortunately, skin grafts just don't look or function all that well compared to normal skin. For this reason, they are mostly an outdated method of treatment for congenital nevi and currently used only in special circumstances.

Here are some members' experiences:

"I can't even imagine what that type of deep, thick, mangled, scarring from a skin graft FEELS like for a lifetime."

"Well, I actually CAN, because I have a BTN covering 45% of my body with that exact type of deep, thick, mangled scarring on about 1/3 of my upper back, where 2 skin grafts were placed. These scars are extremely difficult to deal with over a lfetime. They itch, they bleed easily because they are so fragile, they are stiff and don't stretch, the nerve endings are all damaged so you can't feel heat/cold properly which means I have cut myself or abraded myself or burned myself badly there and can't feel it. They just aren't durable.

They put a crimp in one's love life, because it is always tender to be touched there (and this 41 years now after the surgeries). I really don't like them touched at all and I refuse all back rubs! I got a bad infection from the surgery, I had to have a blood transfusion (thank goodness I did not get AIDS or one of the newer, as yet undiscovered hepatitis versions from the transfusion, etc). And to top it off, unlike my surgery for my large satellite on my face, which I wanted and which I think was a good idea to remove and that surgery I would have over again if I had to decide on it even though that scar isn't that great either, the surgery on my back was totally useless. It isn't as if I can wear a backless dress with that tangled gouged out mangled scarred looking skin with nevus pigment seeping back anyway....And so I still have the cancer risk, too. Besides I have to keep it covered ALL the time to protect it because it gets cut/abraded so easily. I have been suffering with those scars on my back for 41 years now. The rest of my "natural" nevus is much better and gives me less problems, altho the nevus is more fragile than regular skin and I do get lots of irritation in the genital area. Good thing the genital area wasn't put under the knife or I would really have problems with adult diaper rash and really have a crimp put on my love life.... Doctors don't know any of this stuff, because they haven't lived with these bad scars themselves. Oh, well, what is done cannot be undone and no point in crying over spilt milk now..."

"When our daughter was 10 months, she had the forehead portion of her nevus excised and a partial thickness skin graft procedure was done. Now, the graft has a yellow tint and we are thinking of doing the skin expansion procedure to cover her forehead with a more natural-looking skin."

"My boyfriend of over a year has a nevus that covers part of his chest, back, and entire left arm. Until I looked up your website, I ddin't even know what it was. When he was a child, he went through five horrible surgeries to excise the nevus from his arm and replace it with skin grafts. It was terribly traumatic for him as a young boy and his family decided after his fifth surgery not to completely remove the nevus that still remains on his chest and upper back. All his life he has hidden his skin graft scars from the world under longsleeve shirts. Only his close friends and family know the truth. It is a constant source of agony in his daily life to have to hide and lie to people in order to keep this secret. We are going on a vacation to Florida next year and he refuses to wear short sleeves, even in very hot weather. How can I help him cope?"

 WHAT ARE THE PROS AND CONS OF CULTURED SKIN?   Skin cells grown in cultures, called epithelial autografts, are sometimes used as a last resort to cover large raw wounds in some medical centers.  Again, these are primarily used for burn victims, but have been tried on nevus patients with generally poor results. A small bit of skin is excised from a person and then sheets of skin cells from that bit are grown in a lab. The nevus is cut off leaving a large open wound and the cultured skin sheets are placed on top to cover the wound. The use of epithelial autografts sometimes requires long stays in the hospital medical intensive care unit, occasionally in a medically induced coma, to prevent the child from moving around and causing the cultured skin to fall off. Like grafts, these cultured skin cells are very prone to infection, which several of our members have nearly died from. They require months, sometimes years, of bandage changes and wound care.

Cultured skin tends to shrink with healing, thus causing distortions such as pulling the breasts underneath the armpits if used on the back, for example.  This is a cosmetic disaster for a little girl. The breasts must then be pulled back out to the breast area later on and may end up permanently out of place. We have had members in this situation. The skin from epithelial autografts is extremely fragile, even more fragile than grafts, and will often bleed easily with bumps. And kids are bumping and scraping themselves all day long. Some will be unable to play most sports forever, because the skin is just not durable enough. That is a very high price to pay in life and after all that, one could still get melanoma and die.... Epithelial autografts are primarily used for burn victims who have no usable skin left in the burned areas. In that situation, thin, fragile skin to cover raw flesh is better than no skin at all. This generally does not apply to nevus people, as in most (but not all) cases, the original nevus skin is more durable. We don't often think about how tough our skin has to be in order to take all the punishment in rubbing, scratching, and bumping that we give it every day! Naturally, scarring from skin cultures is severe, again usually healing up to look like a horrible burn.  So cosmetically, they aren't that useful. And the skin is so fragile. So clothes often need to be worn constantly to pad and protect them. Like skin grafts, cultured skin just doesn't look or function well enough to be very useful for nevus people. Desperately needed research is underway to improve the quality of the cultures in the future.

Here are some members' experiences:

"It's taken me a while to find time to write this, as my 4 year old daughter, who had a bathing trunk nevus, has been in the hospital in a last ditch effort to remove her Cultured Skin. The LABS that SELL Cultured Skin will tell you exactly what YOU want to hear if you ask them. But keep in mind, they are SALES PEOPLE, not DOCTORS. Our sales person even wore scrubs and a stethoscope when we spoke with him. I'm not sure why, but in some way, that made him more credible to me. His story was perfect. Our Drs. were fooled too. We were all so excited at what he was telling us that none of us stopped to dig up the facts. Our Dr. is not a fool, nor would she ever do anything to harm my daughter. And I too had the brains and ability to look into Cultured Skin. But it seems that we were all blinded by what we were told was the perfect answer. Besides, no scientist would lie about such a thing. RIGHT? We did ask to see pictures of others who had CS used on them. The lab said, "No problem, we'll send them out to you today." We didn't get them until it was too late. Cultured Skin has NO dermis. Therefore my daughter's body couldn't regulate it's temp. in very warm or very cold situations. Running around outside on a hot day, her temp would go as high as 106. In the car w/the air cond. blowing on her, it once went to a low 94 degrees. It constantly itches. She has to take medicine every day for the itching. If she scratches it, the CS comes off like Saran Wrap and blood is everywhere. She has had to have a dressing change every day for the past TWO years, at a cost of $350 a week. She was supposed to spend 14 days in the hospital initially. It ended up being 56 days for her tummy and 92 days for her back. The procedure is TOTALLY painful. It was supposed to be 4 surgeries. It took 9. Medically induced coma 3 times for 4 days each to keep her from moving while the wound bed grew skin. The new skin is reddish purple, has no sweat glands, doesn't feel like skin and doesn't look like skin. The expensive topical antibiotics are the only thing that keep her CS alive. The CS also shrinks after being grafted on. It shrinks so much that it pulled her nipple nearly under her arm pit. Her belly button is off center too. Every time she bumped into anything, the CS would break open and bleed through the dressing change and through her clothes. At times, for no reason at all, the CS would just "spring a leak." More blood. And if the CS were to stay wet for more than a min. or so, it would come off in sheets. And one more large detail, the lab never did biopsies on the skin before they grew it! Meaning, any cancer cells in the original tiny piece of skin were about to be spread all over her whole torso.

I could have sent my daughter to Kindergarten with a nevus. But I certainly couldn't send her with the cultured skin! What if she itched or got wet or bumped into something or any other normal kindergarten thing? There'd be a huge blood-fest. Scarier yet, what about the bad cells? Would she even live through Kindergarten? This time, at 7:30 AM she was given Versed and a Fentanyl lollypop and off she went. After being in Surgery for 11 hours, the Dr.s informed me that they had run into another problem with the CS. What else could possibly be wrong? Well, it seems that the CS had shrunk so much that every time my daughter had moved around in the past 17 months her body had sent scar tissue to the same spot. .....And as I'm sure I don't have to tell you, 4 year old little girls move around ENDLESSLY! SO, then when the Dr.s opened her up, they found a cone of scar tissue 4 and a half inches deep. As they removed more and more of it, they found that it went partially around her spine. The scar tissue was removed on one side. The tissue on the other side will have to be removed in a few months, when her body has recovered from this surgery. We don't want to wait too long because the scar tissue is pressing on all her organs. All this because of the "dream come true" Cultured Skin. This is only my experience. My bad judgment nearly killed my daughter. It's not too easy to live with (the CS and the fact that I signed the surgery consent). I've learned a very harsh lesson and my daughter has had to pay for it. One more thing, the private room at the hospital, the ICU (for the 3 comas she was in to keep the CS alive once it was placed on her), the lab, the surgeons and the daily upkeep is a little pricey. In the fiscal year of October 1997 to October 1998, we paid out over 3 million dollars. I'd pay 20 times that to be able to go back in time and say "FORGET IT!" to that CS salesman."

 WHAT IS INTEGRA?   The Integra Dermal Regeneration Template is a new method usually used on burn patients. Integra consists of 2 layers: a lower layer consisting of collagen from cows and glycosaminoglycan from shark cartilage, and an upper layer of silicone. The lower layer provides a framework for the body's cells to regrow new dermis, the durable underlayer of normal skin. The silicone covers the wound and prevents fluid loss. After 2-3 weeks, the silicone is peeled away and an ultrathin skin graft of the person's own epidermis is applied to cover the regenerated dermis. This newest method tries to recreate normal skin's dermis and epidermis. Hopefully, that will avoid some of the problems found with cultured skin above. In addition, sharks are becoming endangered in the wild because of increased demand for shark cartilage. We have read of one report where Integra worked fairly well in a nevus person with melanoma. But it left a "fish scale" type of look to the skin because of the way it is cut and pieced. That wouldn't matter in cancer treatment, but would if surgery were only for cosmetic reasons. If you have tried Integra, please e-mail us and let us know the results. So far only one member has tried it and this is their experience:

My son had surgery and we used Integra on him. My son is now two and we have not had a good experience with the Integra. We have had additional surgeries caused by the Integra not turning out the way our doctor hoped it would. To make a long story short, the Integra is being removed off of my son. My husband and I are very upset with the fact that due to the failure of the Integra it has cost us so much more money and additional surgeries. Besides putting our son through this. It is very hard going through all of this and only being able to be on one income due to all the doctor visits and surgeries. Are there other parents out there who are struggling money wise since everything adds up?

 WHAT IS DERMABRASION OR CURETTAGE?   Abrading or scraping or curetting off the top layers of skin with a knife called a dermatome has been tried in an attempt to treat congenital nevi. Since wound size and blood loss are very large and dermabrasion leaves nevus cells behind which have in at least one person become cancerous, possibly because the skin cells were traumatized, this treatment is only occasionally used now.  Hospital stays can be extensive after large areas of skin are dermabraded. Occasionally blood transfusions are needed. Unfortunately, there is always some small risk of becoming infected with a blood-borne disease, especially new, undiscovered ones with each and every blood transfusion. Dermabrasion also leaves severe scarring, again like a burn. The skin left is also thinner and more fragile and more tender. The pigment usually seeps back anyway.  Dermabrasion is usually used on very young infants, days or weeks old, as it is thought that the earlier it is done, the better. As the infant gets older, the nevus pigment cells may migrate down into the deeper layers of the skin, too deep for the dermatome to scrape off. In general, the most benefit that can usually be expected after dermabrasion is a lightening of the color of the nevus and an increase in scarring and tenderness. Dermabrasion on the scalp has been known to cause death of the hair follicles and permanent baldness. A person whose nevus was not cosmetically noticeable underneath hair now has to wear wigs for a lifetime or "show" the scarred, partly bald scalp. Imagine the trauma to a teen fearful of her wig blowing off revealing a badly scarred head or of avoiding swimming over a lifetime because she didn't want to wear a wig or swimcap to the pool. Or the anxiety of that first "showing" of the scarred, bald areas of the scalp to a prospective boyfriend or girlfriend... Parents and doctors all try to make the very best treatment decisions, but it can be so very difficult to decide what might later turn out to be the better thing to do, as so many of our members' stories reveal. Dermabrasion is occasionally still used to treat facial nevi, where a lightening of the color of the nevus in general is a cosmetic improvement.

Curettage means cutting off the top layer of skin with a knife called a curette. This is usually attempted at less than 2 weeks of age when there is a layer in the skin called a "cleavage plane." At the cleavage plane, the top layer of skin will more easily peel off. The idea is to remove the very top layer before the nevus cells migrate down into the deeper layers. In our group, 3 families tried it on their newborn nevus baby. One family felt it was ok and two were disappointed in the results.

Here are some members' experiences:

"My bathing trunk nevus goes down to my knees and I had dermabrasion done on it 3 times between the ages of 2 and 4. The brown pigment seeped right back and the dermabrasion left the skin of my thighs so thin and fragile I have to wear clothes all the time to pad, cover, and protect it just so I don't cut myself sitting on prickly upholstered furniture, sharp chair edges, etc. etc. I'm now 45 and it has gotten thinner and more fragile over the years. It isn't "tough" enough to even scratch a mosquito bite without causing bleeding!"

 HOW IS LASER TREATMENT USED?   Laser treatments have also been used to lighten nevi.  The various types of lasers use a special wavelength of light to literally “burn” away the extra pigment to lighten the nevus. Laser does not burn away the abnormal nevus cell. As with other treatments that leave the abnormal cells behind, they can cause cancer, especially after they have been "riled up" by the burn.  The pigment also often reappears and the laser treatments must be repeated periodically.  Laser burns can be moderately painful. Pain medications are sometimes needed. Unfortunately, use of pain medications is always accompanied by some degree of risk of allergic reaction. Some people also get a red, blistered reaction like a real burn afterward. Others don't. Color results are unpredictable. Lasers have been most commonly used to treat satellites. Some satellites will disappear almost entirely, leaving a tiny scar. Others will have no change in appearance. A few will get even darker. If the satellite is bumpy or raised or rough or hairy before laser treatment, usually this will remain after the treatment. Laser treatment for hair removal has not been particularly effective. The long-pulsed Alexandrite laser which is used primarily for hair removal has had the most success. Laser on more extensive nevi may result in a "polka-dot" appearance with some lasered areas turning lighter than other lasered areas. Laser has been tried only a few times on extensive giant nevi with mixed results. Further research is needed to determine how lasers might prove more helpful to those with nevi. Fortunately, there will always be plenty of opportunity for nevus people to do their part to further medical research by volunteering to be guinea pigs for experimental treatments!  And that is one way we can help nevus babies who come behind us.

Here are some members' experiences:

"I am a 28 year old woman and have a bathing trunk nevus. Three years ago I started to have treatments with the Q-switched ruby laser. I've had four treatments on one section of the nevus on my thigh. The laser has lightened the area by about 50%, but it does not change the texture of the skin or the amount of hair growth. The dermatologist that I was seeing would like to continue treatment, but I stopped about a year ago because the treatments are still fairly experimental and there have been no studies that I know of about the long term effects. At this point in my life it isn't worth the risk.... Lasers are quite painful for a few hours after treatment (similar to a burn with hot water).

"My daughter has had 4 treatments within the last 2 years with the Alexandrite laser to treat the nevus around her eyelids and the coarse, dark hair growing all around the eyebrow. The hair grew 3/4 inch long. Now the nevus is about 45% lighter in color overall, and the hair is 75 to 80% gone. This also included the loss of the eyebrow hair. The areas of the nevus that were darkest had the most pigment loss."

 ARE CHEMICAL PEELS HELPFUL?   Chemical peels are caustic chemical agents, often phenol, that are applied to the skin and basically "eat away" or "peel away" the top layer. They are often used to treat acne scars to try to smooth the skin out. Chemical peels have been used to eat away the top layer of nevus to try to lighten the nevus. They have been used with some success in facial nevi and facial satellites. Because they eat away the top layer of skin, people usually get a red, blistered scab-like appearance after the treatment, which takes some time to heal. Again, these treatments leave the abnormal nevus cell behind, so the possibility of increased cancer risk exists. If too much of the peeling agent is applied, the peel can be too deep, causing scarring. Uneven lightening can also occur. For the present, they seem to be the most useful for facial satellites.

Here are some members' experiences:

"I am 28 years old and have a nevus on my left side. I have had several treatments: 5-FU (chemotherapy agent), laser, excision, freezing, etc. Several times the nevus grew back thicker and darker than before."

 HOW DO SKIN EXPANDERS WORK?   The normal skin next to a nevus has been used to cover the skin of an excised nevus by placing a plastic balloon under the normal skin through a surgical incision. The balloon is slowly inflated with salt water or saline over a period of weeks to months, causing the skin to stretch more or less evenly.  Various types of valves or ports are used to make filling the expander easier. A needle with a syringe attached filled with saline is inserted through the skin at the port to inflate the expander on a pre-determined schedule such as weekly. The needle stick can be painful for patients, especially kids, so often various types of numbing creams are used. The most common one is called EMLA cream, which usually must be applied to the skin one hour beforehand in order to take affect. When the expander is fully inflated and the normal skin stretched out enough, the nevus skin is then cut out down to the raw flesh with a knife under general anesthesia. The expander is then removed and the stretched-out, newly expanded skin is pressed down to cover the gaping wound and the edges sewn together. Mild to moderate scarring can occur and there are occasionally pleats, darts, or places where the skin is pulled too tight. The skin usually "seals" down as healing takes place, but can occasionally "bubble." This process is known as "tissue expansion."  The procedure was first used on burn victims, but has also proved very useful for nevus people. It is a way to generate fairly large amounts of nearly normal looking and appearing skin with relatively moderate scarring. Tissue expansion can occasionally produce truly marvelous results, especially on those with smallish giant nevi such as half of a back nevus with lots of normal skin surrounding the nevus and hardly any satellites.

Tissue expansion is not that useful for those who have huge giant nevi because there is not enough normal skin around the nevus to expand to cover the area of the excised nevus. It is also not that useful for those who are simply covered with thousands of satellites for the same reason. Skin expanders are probably the most effective treatment currently available to remove a small to medium-sized giant nevus--and the most popular. Unfortunately, they, too, have a lot of drawbacks. Multiple surgeries, hospital stays, and doctor visits are often necessary. Repeated skin expansion in the same site will result in very thin, stretched out skin. Sometimes the skin gets holes in it and the plastic expander pokes right through. Repeated episodes of general anesthesia are often needed. Many of our members have had 10-20 surgeries, and a few have had up to fifty! Children with the higher amounts would have probably used nearly all the various methods of removal currently available, not just tissue expansion. Parents have described their children kicking and screaming in the car to avoid going to the hospital for yet another surgery. Often several years are needed to completely remove a rather large giant nevus. Unfortunately, some children then spend a greater part of their childhood being "sick" with endless stitches, gauze, bandage changes, wound infections, antibiotic pills to swallow, doctor visits, etc., etc., etc. Many nevus kids will refuse to undergo any more surgeries by about the ages of ten or twelve because they are worn out with it all. The activities of the entire family may revolve around the nevus treatment and other siblings may be neglected. Tissue expanders are prone to life-threatening infection because they are a foreign body sitting underneath the skin. Nearly every person who uses skin expanders gets an infection sooner or later. Several of our members have nearly died from these infections. When the expander gets infected, it must be pulled out, antibiotics given, the infection cured, and the surgery delayed. Then the whole thing is restarted at a later date. It can be so frustrating!

Several French doctors have developed a method of removing smaller nevi using the natural stretching ability of the skin. Sometimes they have also stretched the skin using salt water right at the time of the surgery. This works fairly well for smaller nevi, but not for larger ones. No wonder so many parents dream of unlimited amounts of instant, scarless, natural looking and functioning artificial skin--with normal sweat and oil glands and that nice layer of fat padding underneath it all! With all the drawbacks from the present known methods of removal, it's no wonder a giant nevus is a rare skin condition sometimes better left "as is!"

Here are some members' experiences:

"My son is three years old and was born with a large congenital nevus which they call the bathing trunk type. He has had 8 surgeries since this all began and like all of you has had complications with some of them. His last surgery was in March of 2001. He had a tissue expander put in, but after four months, it got a hole in it and got infected. He was very sick for three weeks with the infection. That was the second time we have tried expanders. The first time was when he was two months old and that one got infected before we even left the hospital. The doctors want to try to put the tissue expander in a third time, but as you can see, I'm very concerned about doing that again."

"Our son also had a skin-expanded flap that the blood was compromised in. Probably about 1/3 of his back turned purple. Our doctor didn't recommend nitropaste (to dilate the blood vessels and improve circulation), but I have heard of others that have used it. Our son ended up losing about 1/3 of the expanded skin that had turned purple. It blistered and looked really terrible and fell off and then he just had a large open wound without any skin that we had to deal with for a long time until new skin grew in from the edges. It took about 2 months and lots of bandages. Our doctor talked about grafting the area to close it quicker, but we decided to just wait out the healing process and not go through another surgery. He now has a lot of scarring in that area. It kind of resembles a spider web with some skin between the scars."

"Our son had his first tissue expander put in on Monday and is doing so well it is unbelievable. He is just 6 months and we were worried, but he has come through this first step with flying colors. In fact, we were expected to stay overnight in the hospital, but everything went so well that we were home that day. Our doctor was absolutely wonderful and caring and the hospital staff was top-notch! I know it is still VERY early, but our son has done nothing but smile and play since one hour after surgery and I can only pray this is a good sign for the road ahead."

"My son currently has an expander on the top of his head. This is his second round. At first, I was very self-conscious about people staring at my son because of that huge bump on his head. During this go-around, I really have not noticed anyone looking at his head, and no one has said anything. I think if you just act natural and do not draw attention to it, no one will make a big deal about it. If they stare, there is no reason to freak out. They are simply curious. If they ask questions, just answer them politely."

"My son had a 600 cc expander in his scalp when he was a year old. He's had 1000, 1200 cc expanders in his back at 2 years and 3 years old. He has also had a 1400 cc expander in his front torso last summer. Currently at 4/12 years old he has two 1000 cc expanders placed vertically in his back. Regarding complications he has experienced: He has had a port flip around which required an additional surgery to reposition. He has had tight closures pull open and produce scar tissue. He has had post-op pneumonia. All of his ports were internal. His expanders are custom made for his body."

"The expansions still stink. She screams bloody murder. I usually hold it together, but today for some reason I couldn't. I cried with her. I was ok with that. I was sad, and it was ok to cry. Lately, I sing to her while she cries and I don't let it get to me."

"Our son had 4 tissue expanders put in. One on the back of his head, one right on the top of his head, one in the forehead forehead and one in the cheek. We started filling on Oct 5th and filled every week until Feb 7th. We (thankfully) did not have any trouble with the expanders. Our son had his expanders removed on Feb 11th. The surgery was 8 hours long. The surgery was by our standards a big success."

"Our son had a giant nevus of his lower back. He also had 14 satellites. The nevus was removed with expanders in 3 surgeries. He has some thin, linear scars left. What they can do nowadays is amazing!"

"Our son's first surgery at 11 months was with 2 expanders on his back under his white skin. We travelled to Toronto to see the best surgeon in Canada (in our opinion) and therefore when we came back home to Winnipeg, we were somewhat alone with this. We filled the expanders ourselves twice a week for 10 weeks and monitored the size and filled approx. 100 mls each time. When our son was 14 months old, we went back to Toronto to have the nevus removed and were excited when the surgeon was able to remove more than was expected. Our son's recovery went so well. He was an ideal case for skin expanders as his nevus covered about 1/3 of his back and he had lots of white skin and not too many satellites around the giant nevus. He had no complications and now he is 16 months and we are just massaging the stitched area 3-4 times daily for the next year to reduce hard scar tissue. He will be ready to get the rest of his gaint nevus off his arm and stomach in a year at 24 months of age. We are expecting that will be his 4th and last surgery. He also has 100's of satelites that keep coming and are hairy but we are not going to remove any of them unless advised by a dermatolgist because of some serious concern. We are so glad we went to the best doctor we could find and are thankful for the amazing outcome of the expanders. They were really no big deal for him and he is really one little happy boy. We would love to share our story in more detail with anyone who is interested."

 ARE THERE GIANT NEVI THAT ARE TOO GIANT TO BE REMOVED?   Yes, we have many members who have such a large giant nevus and so many satellite nevi that total removal is not currently possible.  A few have up to 80% coverage of the total skin surface. In these cases, some parents chose partial removal and some parents opt to leave the nevus as is. Nevus people with a nonremoveable giant nevus face the task of learning to accept the nevus and moving forward in life both in spite of the nevus and because of the nevus.  Some of our nevus adults with a nonremoveable actually feel that they have had a better life than if they had been born "normal!"

Here are some members' experiences:

"When I was a teenager, I would have done anything--and I mean anything--I thought might actually work to erase my bathing trunk nevus, no matter what the bad side effects. I was desperate to have it off and to get rid of it and to be like everyone else. And I especially wanted to wear a backless dress. I dreamed about backless dresses and miniskirts and bikinis and midriff tops and hotpants and a racing back swimsuit with a little heart cutout on the bottom of it. If I thought 100 surgeries or some new-fangled treatment would have worked, I would have put myself thru that torture, I wanted to get rid of my nevus so badly.

As a teen, I would have been very vulnerable to any unscrupulous quick fix or quack treatment or experimental surgery because I would not have been capable of rationally weighing the risks/benefits of any kind of treatment. If it had a shadow of a chance of working, I would have gone for it, even if there was a huge chance I might regret it later on. Fortunately, by that age, my doctor said there was nothing to be done since I have 45% coverage. And even though I wracked my brain, I could not come up with anything else either, except praying that God would perform a miracle and make my skin one color, and I prayed every night for about 5 years, but even that didn't work, so I was stuck! Then I began slowly and painfully learning to adjust to the reality of having a nonremoveable giant nevus, which was a healthier way of coping. "

"I had the same experience. When I was about 16, I actually tried to remove my leg nevus myself using sandpaper. My parents were pretty alarmed at this and ordered a cosmetic product by Lydia O'Leary for me to cover it up. It worked ok, except that you could see I had heavy makeup on my leg, a weird place for makeup, so people still stared and questioned me....and it rubbed off on my clothing."

"I'm 19 years old and a freshman in college and having a blast! As far as my nevus goes, it's been hell since I was little, but things are better now. When I was born, my doctor tried all kinds of stuff because he had no clue what anything was and now I am worse off than when I started. I spent the first 6 months of my life in the hospital and they swore to my mother that I would never walk in my life. So they ripped me apart and dermabraded me and gave me an infection that almost killed me. Luckily, I was too young to remember much. So after a little more poking and experimenting, I was free to go and show everyone who told me I'd never walk that I was damn capable of it! In kindergarten, they tried the balloon expansion and the expanders popped after 6 weeks and they took them both out of my legs. Again they were unsuccessful. I still made all-state gymnast and made a region softball team. I have a bathing trunk nevus from my mid-stomach to my knees, which was where they made the very lousy attempt to dermabrade. I also had very large spots on my left cheek which were removed in 3 surgeries. In total, I would say I've had over 30 surgeries."

"I'm removing the spots in the minds of the parents."--Answer of famous plastic surgeon when asked by one of our members why he advised surgery for those he knew had a nevus too large to be removed!

 WHAT TREATMENT OPTIONS ARE AVAILABLE FOR A FACIAL NEVUS?   A facial nevus presents particular difficulties because it is relatively small in skin surface but it is exposed to view by everyone. Fortunately, it is very rare for facial or extremity nevi to become cancerous or occur with neurocutaneous melanosis. No one in our group with a facial or extremity nevus has yet died, which is wonderful news! Facial nevi are cosmetically noticeable and extremely difficult to remove without causing severe scarring. Children with a facial nevus must "show" all the time. They face endless questions and stares from other people, which wears a person out dealing with the stress of all that after a while. This is in contrast to someone who might have a huge bathing trunk nevus over large areas of the body, but all in areas normally covered by clothing and not exposed to view by others. Such a person only has to "show" whenever they are up to the stress of doing so. And some days you are and some days you aren't.

Most parents of children with a facial nevus opt for treatment, understandably. But they run into all the same complications previously mentioned--and unfortunately some additional ones. Attempts to excise the nevus may cause the skin to be too "tight," which can pull the eye or nose or eyebrow or lip out of shape. More "white" of one eye may show compared to the other. Surgery may result in loss of eyelashes or eyebrows. We have members who have worn artificial eyelashes in public for years, but they are bothersome to apply day after day. One eyebrow may be darker than the other. Skin grafts are occasionally done, but the grafted skin is sometimes a yellowish shade and the color change is noticeable over the patched area. A graft of the skin behind the ear usually gives the best color match. The nose and the ear, which are made of cartilage rather than bone, are especially difficult and sometimes impossible to treat satisfactorily. Many members have ten to twenty surgeries over many years. Results are mixed. We have had members who were called "poopyface" before surgery who were then called "scarface" after surgery. As for makeup, some have had better luck with CoverBlend by Neostrata. Of course, we don't endorse any products. Better treatments are needed in this entire area.

Here are some members' experiences:

"We did an expander on my daughter's forehead nevus and the results were excellent!"

"My daughter, now age 10, has a removed facial nevus. We never had tissue expansion, but I sure wish we would have heard about it when we started the removal procedure. My daughter had a skin graft from her groin area to replace the nevus skin on her nose and cheek when she was 2. Her nevus is now almost completely removed but the removal has stretched out the lower eyelid so that her eye doesn't completely close. We are working on that next. If there is any other alternative, I would avoid a graft from anywhere below the neck. The grafted skin is thicker than facial skin. It is not a good color match and the hair growth is different from facial skin. For now, it is there and it will be up to her to decide if she wants the graft removed and anything else done to try for a better result."

"Our daughter had curettage or scraping of her facial nevus when she was 13 days old. This had to be done within the first 2 weeks after birth in order to work because the color may go to the deeper layers of the skin after that. Her surgery was successful but not to the degree we had all hoped. She still has a very noticable nevus with hair coming from it, although the nevus is greatly faded from the surgery. She is now a little over two years old and we just saw the doctor again. He suggested four options to us: 1) wait another year before having any more surgery, 2) perform three laser treatments to try to remove the hair only, and do surgery (skin graft) at another time for the brown color, 3) do incremental surgeries, taking strips of good skin and stretching it until the whole thing is finished, and 4) do a full skin expansion, after inserting a balloon underneath her jaw and allowing it to expand - this might take 4-6 months. We are trying to decide what to do."

 ...FOR A SCALP NEVUS?   A scalp nevus is another difficult type of nevus to treat. A scalp nevus may cause the hair in the nevus to be thicker, coarser, curlier, or darker than the rest of the hair on the head. We have several members with half a darker or curlier head of hair and half a straighter or lighter head of hair due to a nevus on one side. Scalp nevi can be more difficult to monitor because the skin is entirely covered by hair. And they can be easier to monitor because everyone shampoos frequently and any growth will be felt quickly. It is relatively easy to ask family, friends, or acquaintances to carefully comb through the hair and look at the skin underneath to monitor for changes over a lifetime. But imagine the difficulty in asking your roommate to look at your rectal or genital area to monitor for changes in your nevus that you can't see with a mirror! Overall, we haven't found scalp nevi to be that difficult to check. Simply part the hair and carefully look at the skin of the scalp. Some parents opt to leave a scalp nevus which is entirely hidden by hair as is. At present, we have not yet had anyone with an unremoved or removed or partially removed scalp nevus develop melanoma in our group. The risk of melanoma in a scalp or facial nevus is much lower than the risk of melanoma in a giant nevus such as a bathing trunk. And great news, for some unknown reason, about 1/3 of scalp nevi fade away!

For those who choose removal, skin expanders are the most popular method. While the expander is being worn, the odd shape of the head will appear extremely bizarre to others, similar to the various-sized heads on characters found in a science fiction movie. Occasionally the skin expanded scalp will be pressed down backwards and the hair will grow up instead of down. A couple members have had difficulty trying to retrain their hair to grow downwards afterward! Sometimes the unforeseen complications that occur with nevus removal are absolutely mind-boggling... Scarring with partial baldness is a definite risk with removal of a scalp nevus. Several members have been left with permanent scarred, bald areas where the skin expanded edges were sewn together. Dermabrasion has also caused baldness. Cosmetically this is very difficult for kids to cope with, especially during the teen years. Kids must decide whether to wear hats, such as a baseball cap, all the time, get wig or hairpiece after wig or hairpiece over the years of an entire lifetime, or "show" and put up with the endless stares and questions.... Fortunately in our group, only one person with a facial nevus has developed melanoma. Again, it is a very difficult decision for parents and nevus people to try to figure out what would be the better thing to do.

Here are some members' experiences:

"My daughter's own hair will no longer grow on the scalp area where the nevus was removed and the bald area is aproximately 14 x 11 cm on the left hand side above the ear from front to back and affects a small portion of her hairline. She will possibly have to wear the hairpiece forever. She will get her hairpiece by the end of next week, then we will see for ourselves what procedure and 'glue' they use to keep it on."

"My two and a half year old son was born with a large congenital nevus on the back of his head. At age one he was a candidate for tissue expansion, which he had. The nevus was not entirely removed so he had yet another surgery, at age two to remove the rest of the nevus. After the first initial surgery, there arose a problem. The problem was that his hair was growing the wrong way due to where the expanders were placed. The second surgery, most of the nevus was removed, but some yet still remained, plus the hair is still not growing the way it should and he has a significant bald area on the back of his head. The doctor reassured us that the hair would be taken care of as well as the rest of the nevus, but since the second surgery, everything appears to be even worse than before. What can we do, we're so upset and frustrated."

"Our daughter who is now 3, almost 4, was born with a scalp nevus. She has had 6 surgeries. Mostly expansions and two excisions. After all that she has 30% remaining from the original size. The remaining extends behind her ear, slightly down her neck and to the very top of her scalp. The hair is textured diferently but has turned just as blonde. The most noticible area is the scar tissue. The scars are very thick linear lines dividing the remainder of her nevus from the expanded skin and they (the scars) do not grow hair. Her bald spot is more noticeable than her nevus."

"Our daughter has had tissue expanders in her scalp, nonstop, since she was 7 months old.... She is now 2 1/2. We have never had any scalp deformities and her hair has done just fine and her scars are invisible. Her original nevus was more than half of her scalp. Our plastic surgeon does expand excruciatingly slow. This last expander has been in for 6 months. We're coming up on our last set of operations to finish everything up."

 ...FOR GENITAL AND RECTAL NEVI?   Genital and rectal nevi are extremely difficult to treat and are often left "as is." Nevus skin is generally more fragile than normal skin, and in the diaper area, usually even more so. Diaper rash is common, and can also occur in adults with genital nevi. Some nevus adults have found that they must wash with soap and water immediately after all bowel movements to prevent irritation. Scars in the genital area are particularly irritating. Constipation can cause rectal bleeding in a nevus person with scars around the rectum because the scars don't stretch to pass a hard stool. Instead they tear and bleed. Both constipation and diarrhea should be avoided to minimize irritation of the genital area. Drinking lots of fluids and eating lots of high-fiber grains, fruits, and vegetables will help prevent both problems. A few members also have had colostomies (opening the intestines to the abdomen and wearing a bag to collect stool) for removal of a rectal nevus. One of our members was called "poopypants" by classmates after nevus rectal surgery which caused incontinence. Better treatments are again needed in this area also.

 ...FOR AN ARM OR LEG NEVUS?   Arm and leg nevi are unusual. We have only a few members with giant nevi in these locations in our group. Even fewer have a hand or foot nevus. The hand nevus is cosmetically similar to a facial nevus, as the person often must "show" most of the time and put up with stares and questions. These nevi are difficult to treat. Grafts, dermabrasion, and expanders have been used in the past with mixed results. Expanders are difficult to use because it is difficult to expand around an arm or a leg due to poor blood supply. French surgeons have pioneered a method of using skin expanded from the abdomen to treat extremity nevi. The expanded skin is placed on the arm or leg and then the extremity is sewn immobile for a month or so while the skin "takes." This method has been used with moderate success in infants who don't mind having an immobile extremity for a month, but it certainly isn't a quick, easy solution. Fortunately, no one yet in our group with an extremity nevus, removed or not removed, has yet developed melanoma. Like the head nevus, the extremity nevus has a lower risk of melanoma compared to the trunk or torso nevus. More research and better treatments are needed.

Here are some members' experiences:

My daughter has had about 25 surgeries doing repeated use of tissue expanders in the same area. Her entire leg was covered with nevus. The doctor put a huge tissue expander in her chest and did a tissue rotation to her leg to cover the top of her thigh. Now we keep putting tissue expanders in her thigh to stretch it around to the sides and back of her leg. Then we put in an expander to stretch it even more, and again and again...

We've experienced many problems from repeated expanders. The skin gets thinner and thinner. My daughter's outer thigh cannot have any more expanders in it because her skin is so thin it would tear. Actually, the last expander that she had in her outer thigh, the skin started dying and tearing open a hole right in the center of the expander where it was thinnest. one morning I noticed a little black dot in the middle of the expander. By that afternoon, it had grown to the size of a nickel. I called the doctor and he told me to take some fluid out of the expander to make less stress on the skin and scheduled surgery for the next day. By that time, the black mark was the size of a quarter and looked like it was rotting from the inside out. The skin was stretched too thin and there wasn't enough blood supply to keep it from starting to rot. The other main problem we are having (besides infections) is that the skin gets tougher to stretch from pre-expanded skin. At first we might have gotten 4-5 inches of skin, now we get only 2-3 inches if we are lucky....The skin starts to refuse to stretch anymore and starts dying. She still has a lot of nevus left, so I don't know what we will do now."

 WHY IS NEVUS SKIN SO DRY AND ITCHY?   Nevus skin is dry because the oil glands, like the sweat glands, do not seem to function properly in a nevus. Nevus skin is itchy because it seems to have more cells called mast cells. Mast cells release a substance called histamine, which helps cause allergic symptoms. This is why anti-histamines are used to treat allergies like hay fever. Prescription pills aren't often used for a nevus, except by a few members with extremely severe itching. Scarred skin also generally has no oil or sweat glands and seems to be even drier and itchier than nevus skin. Constantly lubricating scarred and nevus skin is an endless task over a lifetime, especially as the skin seems to get even dryer and itchier with age.

Members have tried all sorts of expensive, prescription lotions and lubricants. One method that seems to work well with the least cost involves taking quick, cool showers and baths only as often as needed, very lightly soaping only the "dirty" areas of the body and rinsing the rest, patting lightly with a towel and leaving the skin still damp, and applying body lotion all over immediately while still damp. A brand that is composed of natural ingredients might be better since gallons of the stuff are absorbed by the skin over a lifetime of someone with a giant nevus. One needs to wait a few minutes for the lotion to soak in, then apply a light coating of a food-grade oil such as canola or almond (anything but olive unless you'd like to smell like a salad!) to seal in the lotion, again wait a few minutes for the oil to soak in, then apply, if needed, a very light coating of a grease such as one of the various un-petroleum jellies, found in health food stores, which are usually made of hardened oils and beeswax. One needs to wait a few minutes for that to soak in, then get dressed. In a pinch, petroleum jelly can be used as a sealant, but it is not a natural product. If light coatings are used and one makes sure to wait the crucial few minutes after each step, then almost none of the lubricants will rub off on clothes. Some members avoid petroleum jelly because it is a petroleum product and huge jars of the stuff will be absorbed by the body of someone with a giant nevus over a lifetime. In many members' experience, expensive, prescription lubricants are not needed and a significant amount of money can be put to better use by avoiding them. Lubricating a dry, itchy nevus is an endless task!

Here are some members' experiences:

"Thank you, thank you, thank you!!! for this outstanding website that I was told about by a friend. I cannot believe I didn't know that it was here before. It brought tears to my eyes reading about everyone else and made me realize that I am not alone. What a relief! I am a 21 year old female college student. I was born with a giant congenital nevus that covered my entire back. Over the first few years of my life, I had 7 major plastic surgeries to remove the nevus. Now it is gone, replaced by grafted skin from my legs. I do have a large scar that covers my entire back stretching from neck to butt and side to side. I also have hundreds of smaller satellite nevi covering my body. None of the physical differences bother me near as much as the fact that my back itches. EXTREMELY itches. I scratch the scars 3 times during the day for about 15 minutes each time and have NEVER slept through the night because of the itching. I scratch my skin grafts at least twice each night. I was wondering if you could help me find someone else who itches like me? I am so glad that you all take time to do this great service to all of us out here who are in need of support."

 WHAT ARE THE GOALS OF SURGICAL EXCISION?   The goals of surgery are to attempt to remove the nevus to try to reduce the risk of cancer and to improve cosmetic appearance leaving the least amount of scarring as possible and skin that functions as normally as possible. Unfortunately, these goals are often impossible to meet. When possible, local anesthesia is safer as general anesthesia has a higher complication rate, including death, compared to local. Under general anesthesia, a person is basically in a medically induced coma dependent on machines to stay alive. Obviously the shorter the anesthesia and the less episodes of anesthesia, the less the risk. One reference we found showed a death rate of 2.1% in surgical patients of all age groups receiving epidural or spinal anesthesia and 3.1% in those receiving general anesthesia. Our death rate for anesthesia would be expected to be lower because nevus people having surgery are generally young and healthy children. Thus far we have been lucky and so far have not had any deaths from anesthesia. No studies have yet been done to our knowledge regarding the long-term effects of multiple episodes of general anesthesia on human memory and learning, although one study showed persistent decreases in learning in mice exposed to anesthesia. At least one of our young adult members, who unfortunately cannot avoid repeated surgeries, has mentioned that her thinking is slower and her memory is decreased for about six months after each of her surgeries. More research is again needed in this area.

Here are some members' experiences:

"My son is now 12 years old. When he was 9 he said, "No more surgery" (after 25 of them). He doesn't like his cape nevus, can't stand the scars, but WILL NOT go through more surgery - at this time. In dealing with his scars, I use the old hands-on approach: rub and massage the scar tissue each day for at least 15-20 minutes. Use a gentle lotion that will help smooth the skin and rub with small circular movements. This will ease the scar tissue that seems to be "stuck" on something and over time, the scar will move freely and have more elasticity."

 HOW WILL THE DECLINE IN THE QUALITY OF MEDICAL CARE AFFECT US?   Unfortunately, the quality of medical care appears to be declining worldwide, according to a recent survey we saw. Certainly this is true in the United States. A recent editorial in an American medical journal we found stated that "...the medical profession is on the brink of collapse." Another recent editorial compared doctors to the hapless Israelite slaves in Egypt, and suggested that a modern-day Moses step forth! And we also have a nationwide nursing shortage here for many of the same reasons. This means our encounters with the medical care system as nevus people will be more frustrating with a higher chance of more complications occurring. There seems to be no quick solution to this problem, especially for those of us who undergo repeated surgeries. If we must seek medical care, we should carry our own chart copy, know all our test results, keep a list of our allergies, write down the name and dose of all of our medications, keep a list of our past surgeries and medical conditions, and assist the doctor or nurse as much as possible.

Most doctors nowadays are permitted only 10-15 minutes per patient, including the mountains of paperwork required on each of us, so they have no time to review our chart or medical information anymore. This also means that the doctor can probably only spend 3-4 minutes actually talking to us. As a result, we must try to maximize the few precious minutes we are permitted with them. Most doctors we meet will know virtually nothing about giant nevus. This is understandable when we realize there are about 10,000 common diseases and 5,000 rare diseases and the number keeps growing each year. No human being can remember all of that information. That means most of the time, we must educate our doctor about giant nevus. And if we help the doctor more, the doctor will help us more! We should undress the appropriate body part prior to the visit to save a few minutes' of precious time. Sometimes as a costcutting measure, gowns are no longer given, so it is handy to bring one's own "gown" such as a baggy T-shirt or sheet, to the doctor visit. It is also handy to bring another person to the visit to listen and take notes on what the doctor says, because it is so hard to remember everything after the visit, especially when one is stressed out. And nevus people going to the doctor are stressed out! If we have surgery or are admitted to the hospital, it is also handy to bring another person to stay with us as much as possible to help with our nursing care because of the shortage of nurses. Often parents can room in overnight with a child to help nurse and watch their child. We've already had parents who have cleaned broken thermometers and used needles from the floor underneath their child's crib because of a shortage of housekeeping staff!

And it would seem prudent to try to keep ourselves as healthy as possible to avoid unneeded encounters with a medical care system in decline. More health care often leads to worse health, often from complications or adverse reactions. For example, the risk for a patient having an adverse drug reaction is 1-3% and the risk of that patient dying from such an adverse reaction is approximately 1:10,000. Even aspirin and acetominophen end up killing people every year. Freak accidents also occur, such as the oxygen tank that was inadvertently left in an MRI room from a previous patient that then hit a 6 year old boy in the head when the magnet was turned on. The MRI ended up killing that little boy. Most people have absolutely no idea of the many risks involved in medical care. They will blithely look at our birthmarks and say "Oh, no problem, you can have that removed" and give us the impression we should have already done it! But we know the substantial limitations of current medical therapy. We know that often the best medicine can be no medicine!

Here are some members' experiences:

"After so many times being in the hospital with my son, I feel that I am also getting pretty frustrated with the less than perfect nursing staff as well. We go to well-known hospital...I guess I just expected better. Knowing that I have to keep going back for surgery every 3 months makes it hard to complain because I don't want to alienate them from us but at the same time I feel I have to advocate for my son. Anyone else experience this dilema?" "Yes, we felt the same way about our hospital, and we had been there for all 17 surgeries. We just always tried to get home as quick as we could. I try to be firm without being rude. Once the hospital was extremely busy and they tried to put us in a room with another child who had a horrible cough and whose mother had left him there alone so he was screaming and crying and no one could comfort him. The poor boy was only about 18 months old, but I didn't want my son next to a sick, screaming child right after surgery. We stood in the hall as they wheeled in a bed for our son, and when they arrived with the bed I just looked the nurse in the eye and told her my son was not going to be staying in that room with that child. She claimed the mom would be back soon, and it would be OK, and I just told her no. She was obviously very tired and having a busy day, so she was annoyed but she listened. We've had other times when I have been firm but polite with the nurses and I don't see them holding grudges. I've called housekeeping a couple times asking why there were no clean rooms yet since my son is still in post-op waiting. He's waited hours for a room at times, and I just got tired of it. I've walked the halls in the peds floor and then gone to the desk, identified myself, and asked the nurses if my son can stay in any of the rooms I have found that were empty. I try to be tactful about it. I know they are busy, and underpaid, and it's just like anywhere, you get all kinds of people and attitudes, but this is my son and I want him taken care of. I don't yell or complain, I just explain my situation and keep searching for answers until I get somewhere. I think I have reasonable expectations. Sometimes I do things myself, like getting an extra bed, the sheets, or food or drinks, or waiting at the desk for the pain medicine. I usually get results, and I don't see them alienating us. A few nurses are really good and always quick to help, and some go really out of their way to help. I've commented on why we seem to have trouble with the ped floor nurses to some of the other hospital employees. The only answer I have ever received was a comment that "no one wants to do that type of nursing anymore." Our plan is usually to get out ASAP and get back to "normal." Being in the hospital isn't good for anyone in our family. Since my wife is usually very busy comforting our son after surgery, I try to be the pushy one who makes sure the things that need to happen do. It can be very frustrating."

"Just wanted to know if anyone else's child has been on their doctor's waiting list for sometime? Our 4-year-old daughter has been on the waiting list since March 2003 for tissue expansion of her left shoulder/arm nevus and it just seems to be taking so long to hear anything and now it is January, 2005. So we've been waiting 22 MONTHS! As this is her last year at home before starting school, I am of course really hoping that things will start this year to prevent missing school as tissue expansion is such a long process. Each time I have rung the doctor's office his secretary just says he has a huge waiting list and not much surgery time at Children's Hospital and that she can give me no indication at all when my daughter's operations will begin. Has anyone else been waiting this long?"

"We had similar problems last year when we were waiting for our daughter to get her skin grafts done. I think we ended up waiting about 12 months, but towards the end of that time I think I was ringing the doctor about once every 4-5 weeks."

 WHAT TYPE OF CONCERNS DO MOST PARENTS HAVE?   Most parents describe themselves as "shocked" after the birth of a child with a nevus.  It isn't easy to take a black spotted newborn baby home for any parents, especially if lumps, bumps, and long tufts of thick, dark hair are also present. All parents in today's society are under a lot of pressure to produce a "perfect" child and so we nevus babies are definitely a surprise to our parents. Nearly everyone's first reaction is "to get rid of it" or "get it off," until we all find out how difficult that can sometimes be to accomplish. Many of us must learn the bitter lesson that some things are impossible, no matter how badly we might want them. Family and friends must be informed and educated regarding this skin condition. It isn't going to be easy for any parent to show a black-spotted baby to the in-laws, no matter what a person's race is.

Feelings of guilt and depression in parents can sometimes last several years.  If the nevus is visible when dressed, stares and questions by others will occur.  Children should be instructed to say, “I was born with this birthmark. It doesn’t hurt.  It is not contagious.”  Decisions regarding treatment are very stressful for most parents.  Ridicule of children with nevi or scars by their peers is common and coping strategies must be learned.  Those with facial nevi have a particularly difficult time.  Children with a nevus usually become very strong and courageous. Most children can go swimming wearing either regular or custom-made swimsuits.  Aquatards (Quik Sew Pattern 1995) work well for a bathing trunk nevus and leotards or scuba dive skins work well for a torso nevus.  Over-size T-shirt dresses (Kwik-Sew Pattern 1830) and Hawaiian pareos and muumuus (Pauloa Patterns, PO Box 11254 Honolulu, HI  96823) make excellent swim covers.  Ballet, dance, and sports are also possible wearing regular or custom-made outfits.  Adolescence is a difficult time, although ridicule by peers greatly decreases after high school.  Homeschooling is also an option now.  Most people with large nevi are able to make the many adjustments necessary to live as normally as possible.  Some even feel that their lives are better than if they had been born "normal." Parents should seek medical evaluation soon after the birth of an affected child.  This will usually be a dermatologist, a doctor who treats diseases of the skin.  You may also be referred to a plastic surgeon.  Since there is clearly no agreement at present on the better methods of treatment for nevi, you will find differences of opinion among doctors.  If in doubt, obtain several opinions.

Here are some members' experiences:

"I know our experience with all our expansions and excisions has been rough, but NOTHING compared to what you have been through. Although, like you, I now question if what we did was right. It is so hard.. you have this tiny baby, and the doctors fill your head with miracles. So you think you are doing the right thing. Then, Wham! I now have a very unhappy child, unhappy with his scars and baldness. Would he have been happier if I had left it alone? Would it have been easier for him to explain? I bet I am not alone when I sit and cry and wonder if we did the right thing, if he will be able to get through the teenage years."

"Our son has a GCN which is visible. When he had to change schools because of our moving to a new town, we wrote up a sort of book report/pamphlet abou GCN. What it looked like, why, etc. We sent it out to all the parents of the children in tthe entire school. We asked them to read it and discuss it wih their children. We enclosed our phone number and e-mail in case anyone had any questions. We wote about issues such as teasing, what our son can and cannot do, etc. We got such a wonderful response and it made the transition so much easier for all of us."

 HOW OFTEN SHOULD A CONGENITAL NEVUS BE EXAMINED IF IT IS NOT EXCISED?   A nevus should be examined at home once a month and by a physician every 6-12 months.  Very detailed skin photographs can be taken for later comparison to see if any changes have occurred. Medical photographers often use a standard technique for obtaining photographs, but these may not be detailed enough to scrutinize the skin up close for changes. A nevus person may have to have their own set of more detailed skin photos taken. For someone with a large nevus and many satellites, sometimes over 100 very clear photos covering the entire body may be needed. Anyone who feels uncomfortable about getting the film developed can always try a photo shop in a different town. Most photo shops are very understanding of the need for medical photos.

A new, more expensive technique called mole mapping is now available. Digital photos are taken of the skin and entered into the computer. Programs are run to analyze the photos for changes. This technique may prove useful, especially for those with an unusual nevus, but there is nothing like the old, economical method of pulling out your box of photos to check your skin for yourself late on a Saturday night when the doctor's office is closed! Constant checking and re-checking can also become very stressful for a nevus person over the years. But a very detailed set of photos may save a nevus person from the greater trauma and stress of an unneeded biopsy. After undergoing several biopsies, where a tiny piece of skin is cut out and examined under a microscope, most nevus people get tired of them. They all leave another slightly tender scar, too. Personal copies of important medical records should also be obtained.  Scars of excised nevi should be examined periodically and photos should be taken of them also.

 WHAT IS KNOWN ABOUT THE SAFETY OF BIRTH CONTROL PILLS AND PREGNANCY IN WOMEN WITH GIANT NEVI?  Very little is known about the safety of the hormonal changes using birth control pills or while pregnant in women with giant nevi. In the past, it was thought that both might increase the risk of melanoma, which is one reason why many older women with giant nevi remained childfree. However, the latest data seem to show minimal risk of causing melanoma by using birth control pills or getting pregnant. In evaluation of women with normal skin in several published studies, use of birth control pills or hormone replacement therapy does not appear to increase the risk of melanoma. Pregnancy does not appear to increase the risk of developing melanoma. And pregnancy before, during, or after the diagnosis of melanoma does not appear to influence 5-year survival rates. Whether this would also be true for women with giant nevi is unknown, of course. In our group, we have had a substantial number of women with giant nevi, perhaps around 50, who have had children without developing problems with their nevus. We have had one member with a giant nevus who developed melanoma while pregnant with her third child and died of it when the child was about a year old. Based on what is currently known, if there is a higher risk of melanoma with birth control pills or pregnancy, it would be only a slight increase in risk, if at all. So, overall, this is good news!

 WHAT ARE THE BENEFITS OF HAVING A GIANT NEVUS?  There really isn't any good way to remove a nevus. Perhaps researchers will concentrate on figuring out how the few whose nevus fades away over time do it and then apply it to all of the rest of us! But after all the negative things we have mentioned, it is wonderful to know that quite a few of our adult members feel that there are many benefits to having a giant nevus. Several feel that their lives have actually been better because of the nevus! Numberous benefits include being more empathetic, more courageous, less materialistic, less fearful of aging, less superficial, more compassionate, and more appreciative of this wonderful gift called life. And the families of nevus people are given the opportunity to enjoy many of these benefits, too!

Here are some members' experiences:

"I'm 45 years old with a bathing trunk nevus. My nevus has been a blessing for me in many ways--a blessing in disguise, of course. It has certainly made me a better person, a more compassionate person, and a person with more freedom. I mastered many important lessons in life by age ten, lessons that many people never master, such as that money does not bring happiness, it is folly to "keep up with the Jones," beauty is only skin deep--and fleeting, and life is indeed precious. I feel I was gifted with a giant nevus to master these important lessons. They were hard lessons, tasks I never would have chosen to undertake on my own if I had had the choice. I learned my nevus could kill me early on, by the age of three. I lived under the shadow of death at any time that we all live under but most choose to ignore. Everyone who lives will die. Some sooner and some later. That knowledge served as a motivator for intensified living for me. Better to live well today, because only God knows what tomorrow will bring. Do I long for "perfect" skin? Of course, on rare occasions. And desperately as a teenager. Because it would make my life simpler with less hassles in some ways. Would I want to have been born "normal?" No, because then I would never have learned the really important lessons in this life. And for the most part, I have gotten so used to it that it has become a part of me."

"Our dear boy is 70% covered with giant nevus and we knew early on that we could never erase his condition. That to attempt to do so would mean constant surgeries for most of his life ... an endless cycle of surgery, pain, recovery, surgery, pain, recovery ... After two surgeries, we prayed and considered the pros and cons of discontinuing surgery. The obvious "con" ... the one that is at the forefront of most parents' minds is that threat of skin cancer. The other "con" is the social aspect. Every parent wants to try to give their child the most "even footing" he/she can get when socializing with peers and classmates. But for us, the "pros" far outweighed the "cons." We wanted wellness for our son. Not sickness and hospitals. We wanted him to live without constraints and without scars (physical and psychological), at least as much as possible. We wanted him to play and sing and romp without the stress of upcoming visits to doctors. And, we help him deal with any blows to his self-esteem as they occur. He's sure had some heavy blows already ... name calling mainly ..."hey werewolf" "brownneck" "dot" "spot" "polkadot." OUCH!!!!!!) And, you know what? He's the coolest kid in town. Everyone knows him ... Most everyone wants to be his friend! And, not so much because he has GCN, but because his happy, sensitive, inquisitive personality shines like a beacon."

"I'm 32 years old and I've never had any significant portion of my birthmarks removed. And mine are extensive. They cover over 80% of my skin. My life has been relatively normal. I've dated, had boyfriends, married and had children. I've been to college, have a great job, and basically am just like everyone else out there. I respect a parent's decision to opt for surgery. I agree that there are some medical issues that may need to be addressed. But some people seem to think there is something wrong with having a nevus, so I just want to point out one thing: I HAVE A BATHING TRUNK NEVUS. I'M PROUD OF IT."

"I am a 20 year old girl and I have a giant nevus that covers half of my neck, my left shoulder, and part of my chest. I also have hundreds of satellites. My nevus is thicker, darker, and rougher on my neck. When I was a baby, my parents decided not to have my birthmark removed (there isn't any easy way to do it anyway) and I am glad they did. My parents raised me with the idea that the nevus was no big deal. I sometimes thought I would never have a date, but then I realized something. It is true that some boys won't approach me because of my nevus. Some people care excessively about physical appearance. Well, I am glad they stay away from me because I don't like people who are too superficial. My birthmark is like a special net that permits a good person to approach me and that keeps bad ones far away from me!"



This information is for general purposes only. No one is to act on this information and everyone must consult their own personal doctor for specific medical advice about treatment and care of congenital nevi.


 
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