©Nevus Network

The Congenital Nevus Support Group©


PO Box 305 West Salem, OH 44287  (419) 853-4525  (405) 377-3403

web site: http://www.nevusnetwork.org   e-mail: info@nevusnetwork.org


Member Statistics 2004

Nevus Network Nears a Thousand Members!

Our mortality rate is now 2.7% for those with a garment (bathing trunk or torso-type) giant nevus and it is still at 0% for those with a head (scalp or facial) or extremity nevus!

We publish the stats on more than 1000 people with a giant nevus. If you are not yet in our database, we encourage you to enter yourself or your child. Your information, which is completely confidential, will help others with a giant nevus. The more information we all have, the better decisions nevus parents and nevus people can make.

To help other nevus people and yourself or your child, please send us a name, address, phone number, e-mail address, the name of the person with the nevus, a date of birth, type of nevus, number of satellites, treatment if any, marital status, children, occupation, and mention anything else of interest. stats entry If you feel more comfortable, you may use a pseudonym or remain anonymous. You may also mail your information to Nevus Network, PO Box 305, West Salem, OH 44287 or you may call us at 419-853-4525. We can return USA telephone calls after 9 pm EST if needed.

We now have 995 members listed in our database. We feel our statistics are the most accurate in the world because we have the largest database of nevus people worldwide! Much of the information on our members is unfortunately incomplete. If your information is incomplete, please help others, especially nevus babies, by contacting us at info@nevusnetwork.org to update your information, regardless of what other nevus groups you may be involved with or where you live worldwide. This will mean that our statistical information will be as accurate as possible. A nevus member is defined as a person with a giant congenital nevus over 20 cm or 8 inches in diameter in adulthood, 8 cm or 3 inches in an infant or a nevus covering a substantial portion of a particular location on the body, such as the face or the foot. We also have a small category consisting of persons without a giant nevus but only multiple satellite nevi. And good news: our mortality rate for those with a bathing trunk or torso giant nevus is still quite low at 2.7%. Those with a facial, scalp, or extremity nevus can feel even better, as the current mortality rate for those types of nevi is zero in our group, whether removed, partially removed, or left "as is." That is wonderful news! Unfortunately, those without a giant nevus and with just satellites continue to be our sickest members. That tiny subgroup has a mortality rate of 41%. Approximately 2 out of 5 people born with just satellites will die. They are at high risk for symptomatic NCM. This still means 3 out of 5 of this subgroup live. That is pretty good, considering many current nevus adults were told as children that they should expect to die before adulthood. Overall, even three out of five is a huge improvement! More research is needed. You can help improve our research by making sure your entry in the database is up to date so that we can provide you with the most accurate statistics. Our 2004 stats are not completely comparable to our 2002 stats because we have improved our technique since 2002. Our 2004 statistics are much more accurate. Here are the rest of our stats:

Total nevus members listed in database: 995
Nevus member with insufficient data to include: 65
Nevus members with a garment (bathing trunk or torso) nevus: 559
Bathing trunk: 271 Torso: 259 Head and torso: 20 Unknown location: 8
Males: 234 Females 322 Unknown sex: 3
Male to female ratio: 1:1.4
Garment nevus members lost to contact: 75
Number remaining: 484 Number with melanoma: 20
Risk of melanoma:4% Number with melanoma who have died: 7
About 1/3 who get melanoma have died of it while 2/3rds are alive
Number with known NCM: 24 Risk of NCM: 5%
Number with NCM who have died: 6 About 1/4 who get NCM have died of it while 3/4ths are alive.
Risk of melanoma or NCM: 9%
Total number of garment nevus deaths: 13
Garment (bathing trunk and torso) death rate: 2.7%

This 2.7% death rate may be biased upward because of the 75 members lost to contact. It is probable that the true death rate for a garment nevus is lower than 2.7%. This means that around 90% of garment nevus children will probably not have complications from their nevus based on our current statistics.

Stats of Members with a Garment Nevus who have Died

B, male, age 23, torso nevus w sats, "as is," died of melanoma, NCM
C, female, age 5, back nevus w sats, seizures, learning delay, VP shunt, unknown treatment, died of NCM
D, male, age 5, BTN, excised in 7 operations, died of melanoma
F, male, age 11, torso nevus, excised, died of NCM
J, male, age 26, BTN, African-American, unknown treatment, died of melanoma
P, male, age 4, back nevus, unknown treatment, died of melanoma
P, female, age 4, BTN, "as is," hydrocephalus, died of NCM
S, male, age 11, BTN, excised, died of NCM
S, male, age 7, BTN w Dandy-Walker, seizures, developmental delay, died of NCM
T, female, age 1, BTN, "as is," hydrocephalus, died of melanoma spinal canal
T, female, age 40, blouse nevus, "as is," had 3 children, died of melanoma when 3rd child was 13 months old (our first member who got melanoma while pregnant)
W, female, age 4, BTN partly removed, died of NCM
Z, female, age 28, BTN totally removed in 16 operations, died of melanoma of brain

Stats of Members with a Garment Nevus who are Surviving with Melanoma.

C, male, b 1945, back nevus, misdiagnosis melanoma of back 1990, then diagnosis of melanoma of back 2003, spread to ribs and lung, on chemo now
C, male, b 1997, BTN, melanoma 01
C, female, b 1956, BTN, melanoma 96 groin, excised
E, female, b 1980, torso nevus, melanoma 94 neck, excised
J, male, b 1985 BTN, melanoma ?00, excised
K, male, b 1995, giant nevus, melanoma 00, excised
M, female, b 95 1/2 back nevus, melanoma ?99, excised
P, male, b 1993, back nevus, melanoma back 99, excised
P, male, b 2001, BTN, melanoma hip 01 at age 7 mo, excised, lost to followup
S, male, b 1977, BTN, melanoma hip w spread to groin lymph, excised, chemo
S, female, b 1970, BTN, melanoma back age 7, excised, melanoma in arm satellite age 18, excised (our first member with melanoma in a satellite)
W, male, b 1961, back nevus, melanoma back 94, excised

So far it seems that our members can get melanoma/NCM and die of it at any age and regardless of treatment or not. But again, since most nevus adults were told they would probably die, 2.7% is really very minisule for us!

Other Stats for a Garment Nevus

Number and percent known to have satellites: 279 of 559 = 50%
Number and percent of members from ages 0-17: 377 of 559 = 67%
Number and percent of members from ages 18-39: 111 of 559 = 20%
Number and percent of members from ages 40+: 35 of 559 =6%
Number and percent of members with unknown age: 7%
Number of members who are married: 30
Of these, number divorced: 9 and number with children: 26

75% of nevus adults over 40 have been married! That is great news, considering most nevus adults were told in the past that they would never find a mate. And 65% have had children, again, wonderful news, considering many nevus adults were told that they should never have children. So far only one nevus woman who got pregnant died of melanoma. If there is a risk to a nevus woman of getting pregnant, it must be fairly small. All in all, most nevus people are able to live a pretty "normal" life.

The overwhelming majority of garment nevus members are European-Americans. In addition, we have a small number of other origins represented: Hispanic: 11 African-American: 9 Asian: 13 Middle Eastern: 6 Indian: 1

Treatment Decisions of Members with a Garment Nevus

Members with a treated or excised nevus: 81 Nevus members with a partly treated or excised nevus: 194 Nevus members with a nevus left "as is": 88 There are many nevus members with incomplete treatment information.

Statistics of Members with a Head or Extremity Nevus

Nevus members with a head (scalp and facial) nevus: 48
Nevus members w a scalp nevus: 108
Nevus members with a facial nevus: 126
Nevus members with an extremity nevus: 89
Total nevus members with a head or extremity nevus: 371
Males:143 Females:227 Unknown sex: 1
Male to Female ratio: 1:3 Head and extremity nevus members lost to contact: 56
Number remaining: 315 Number with melanoma: 1
Number with NCM: 1 Risk of melanoma/NCM: about 1%
Number of deaths: 0
Head and Extremity death rate: 0%

Great news! So far no one with a head or extremity nevus has died of melanoma or NCM! This rate is probably lower than the true rate, because it is well known that fatal melanoma does rarely occur in tiny nevi even in "normal" people.

Other Stats for People with a Head or Extremity Nevus

Number and percent of members ages 0-17: 285 of 371 = 77%
Number and percent of members ages 18-39: 46 of 371 = 12%
Number and percent of members ages 40+: 20 of 371 = 5%
Number and percent of members of unknown age: 6%
Number of head or extremity members ever married: 19
Of these, number divorced: 2 and number with children: 13
Number Hispanic: 8 African: 9 Asian: 4 Middle Eastern: 1

95% of members with a head or extremity nevus over age 40 have been married. And 65% have had children. This is great news, considering how disfiguring a facial nevus can be....

Treatment Decisions of Members with a Head or Extremity Nevus:

Members with a treated or excised nevus: 131
Members with a partly treated or excised nevus: 66
Nevus members with a nevus left "as is": 30

Because head and extremity nevi tend to be more visible and are not ordinarily covered with clothes, most parents understandably do make an attempt to remove them. It is very stressful to constantly be "on display", "showing," and educating others about nevus. There are 6 billion people in the world and we nevus people could wear out before we finished educating them all about us!

Stats for People with only Satellites and no Giant Nevus

Number of nevus members with only satellites: 18
Number lost to contact: 1
Number remaining: 17 Number of deaths: 7
Satellite-only death rate: 41%

Once again, those very few members born with only satellites are our sickest members.

Stats of members born with only satellites who have died:

B, male, age 9, died of NCM
D, female, age 2, died of NCM
D, male, age 8, died of NCM
H, female, age 2, Dandy-Walker, died NCM
M, female, age 2 Dandy-Walker, seizures, died NCM
M, female, age 2 hydrocephalus, died of NCM
O, male, age 3, hydrocephalus, seizures, died of NCM

We also have one member, female, b 1997, who only has multiple satellites and no giant nevus who was diagnosed with melanoma of the neck at age 6 months. This was excised and chemo was given and she is doing fine in 2004.

Biopsies of skin (cutting into the nevus and taking a tiny bit out to look under the microscope) can also be difficult to interpret. We have 5 members with atypical biopsies, cells that aren't normal but aren't quite cancer either. We have 2 members with "indeterminate" melanoma. We have 1 member who was given a diagnosis of melanoma for 2 months in 1990 which then supposedly turned out not to be melanoma who then did develop melanoma in 2003, 13 years later.... Some of our members have had their biopsy samples sent to pathology conferences, so that a group of pathologists can individually vote their best guesstimate of whether a biopsy is cancerous or not. Again, it is all very strange, isn't it?

Other Member Info:

We have 24 members who have had seizures. In a few cases, the seizures have gone away! We have 29 members diagnosed with NCM and in one person, the NCM also went away. We have 18 members with hydrocephalus (excess water on the brain). We have 40 members who have had abnormal MRI's. In 3 members, the MRI later became normal, so the brain lesions might have disappeared. And in 2 cases, the abnormal MRI improved. Nevus people are certainly a puzzle! Many members have had multiple MRI's. Our record is a member with 6 MRI's, which went from abnormal to normal on the 6th! We have had 3 members with 5 MRI's, 2 with 4 and one with 3. And if you are one of the many members who have never had an MRI, count your blessings that you've never needed one! We have had a member who has had surgery stretching over 21 years. Our oldest member was born in 1936. The longest length of time that an adult nevus person has avoided going to the doctor is 23 years. (Yes, we nevus people are supposed to go for a skin check once a year, but adult nevus people often get doctor-phobic and refuse to go...) The longest time spent in the hospital by a member is one year. The most satellites of a member attempted to be treated by laser was 838 satellites one time and 915 satellites another. Neither attempt worked and the satellites came back darker than before.

Members with a Giant Nevus and Other Conditions:

Nevus people often have a large variety of other medical conditions or problems, in addition to their giant nevus. Here are some of them in our group:

Abandoned as infant and adopted out: 2 in USA, multiple in other countries like China
Absent/malformed gluteus maximus (born without buttocks): 3
Adermia (born with open area not covered by skin): 4
Alport Syndrome: 1
Arthrogryposis: 1
Atrophy of leg: 2
Avoidance of doctor by nevus adult, causing delay in treating melanoma: 2
Autistic: 1
Bleeding, cracking nevus: 3
Brain tumor, unknown type: 1
Brain surgery, unknown type: 1
Breast area covered with nevus: 9
Breasts very large with breast reduction: 1
Chiari Malformation: 1
Childhood unhappy: 2
Cleft palate: 2
Clinical depression in nevus person: 9 Of these, number suicidal: 2
Clinical depression in nevus parent: 5 Of these, number suicided: 1
Clonus: 1
Dandy-Walker variant: 3
Dental-palate abnormalities: 1
Developmental delay: 8
Developmentally delayed child improving after febrile illness: 1
Divorced parents due to nevus: 2
Dyslexia: 1
Edema (abnormal swelling): 2
Factor V Leiden condition: 1
Family problems, severe: 2
Fibromas: 1
Hair, multicolor, with scalp nevus: 3
Hashimoto's thyroiditis: 1
Headaches, severe: 1
Heart Defects: PDA and ASD (holes in heart): 1 PDA: 2 VSD: 1
Heat Exhaustion due to minimal sweat glands: 1
Hemangioma of scalp: 3
Hemorrhoids, congenital: 1
Hip dysplasia, congenital: 1
Hives, severe, with excess mast cells: 1
Hydrocephalus, congenital (born with): 2
Immune system low: 1
In-vitro fertilization: 2
Irritated nevus: 2
Itching: 7
Itching till bleeds: 3
Itching causing awakening at night: 3
Kidney, enlarged: 2
Knee nevus: 3
Labia enlarged needing reduction: 1
Lipomas (fatty tumors): 8
Light colored nevus: 11
Lymphangioma: 1
Manic-depressive: 1
Motor delay: 3
Multiple sclerosis: 1
Neurofibromatosis: 3
Nevus enlarging outward and getting puffier: 2
Nevus spilus: 2
Nodules in nevus: 3
Oppositional behavior syndrome: 1
Optic glioma: 1
Panic Attacks: 1
Pedunculated congenital anal mass: 2
Plagiencephaly: 2
Port-wine stain: 3
Premature baby: 5
Psychological problems: 11
"Puffy" satellites: 2
RSD: 1
Relocation of family to dark-skinned country after birth of nevus baby: 1
Bald scalp nevus (never had hair): 1
Schizophrenia: 1
Scoliosis: 2
Sibling jealousy: 3
Sixth nerve palsy: 1
Soft-tissue tumors: 7
Speech delay: 10
Spinal astrocytoma: 1
Spinal cord cyst: 2
Sturge-Weber: 1
Sweaty-palm syndrome: 1
Teeth lacking enamel: 1
Tethered spinal cord: 1
Toes undivided: 1
Turner's syndrome: 1
Vitiligo: 5


In general, a giant nevus is not inherited. No one with a giant nevus has ever had a child with one so far.... However, there are a few rare families who are exceptions to the above "rule." We have a great-aunt with a back nevus whose grand-niece also has a back nevus. We have a girl with a BTN whose half-sister has a medium nevus of the ankle We have a member with an elbow nevus whose mother has multiple satellite-type nevi and melanoma. We have a member with a BTN whose great-grandfather had a thigh nevus and whose great-grandmother had a L facial nevus. We have 4 sets of identical twins, one with a giant nevus and one without. Amazing! We have 3 sets of triplets, one with a giant nevus and 2 without. We have 7 sets of twins, unknown whether they are identical or fraternal, one with a giant nevus and one without. And we have 5 sets of fraternal twins, one with a giant nevus and one without. BUT a non-twin brother of one of our fraternal twin sets has a very light-colored tardive giant nevus that appeared at age 3! It's all very fascinating, isn't it?

Complications from Treatment of Giant Nevi:

Nevus children whose parents choose removal can undergo a phenomenal amount of surgery over a lifetime. Our record is a member with 190 major surgeries and 10 minor surgeries! With such large volumes of surgery, sooner or later, most nevus children whose parents choose removal will unfortunately suffer from surgical complications. In fact, complications are so common that they should be considered inevitable for anyone thinking about a removal that involves more than 2-3 surgeries. After reading through this scary list, it is clear that some giant nevi which are too big or too complicated to easily remove are better off left "as is" until more effective treatments are found. Nevus kids can suffer terribly from the complications, and some are life-long. This just adds to the stress and pressure we nevus people all have to bear dealing with the nevus,especially if we are left worse off after treatment than before. We have listed only the most severe complications here:

Failed surgeries (surgeries that didn't accomplish anything): 1 member with 15 surgeries, 2 with 5, 1 with 3, 5 with 2, 3 with 1. (Imagine how parents feel after they realize they have put their kid through useless surgeries...)
Poor wound healing (open wounds that would not heal): 1 with a draining wound that hasn't healed in 3 years, 1 with wounds that took 1.5 yrs to heal, 3 which took 1 yr to heal, 3 which took 6 months, 3 which took a month.
Severe scarring after surgery: 53 members mentioned they were very unhappy with their scars. Many others were moderately unhappy.
Severe infection from surgery: 25
Nearly died from surgical infection: 3 So far, thank goodness, no one has yet died of surgical complications....
Infected Expanders: 6 and many more who didn't list.
Expander skin dehiscence (expander skin was stretched too thin and a hole broke open in the skin over the expander): 5
Skin too thin after too much expansion: 5 Of these, causing bleeding: 1
Repeated expander unable to expand more, as skin to be expanded is either too thin or too thick: 3
Expander bag broke: 2
Failed laser treatment (laser did not do anything positive to the skin): 8
Bad scarring after dermabrasion: 8
Pain after dermabrasion: 1
Painful scars: 3 causing difficulty sitting: 1
Failed graft (grafted skin dies and leaves open hole): 1
Numbness of leg after grafting: 2
Drooping eyelid after facial nevus surgery: 2
Unable to close eye after facial nevus surgery: 4
Lost eyelashes and eye is permanently swollen and teary after nevus eyelid surgery: 1
Lost eyebrow: 1 Eyebrow pulled out of shape: 3
Yellow tint after facial skin grafts: 2
Eye distorted in shape after surgery: 6 Causing severe teasing and school problems: 1
Hemorrhage during/after surgery needing blood transfusion (which increases risk of blood-borne diseases like hepatitis): 6
Of these, those nearly bleeding to death: 1
Hematoma (blood pocket) after surgery: 1
Failed excisions then tried expanders to remove nevus: 3
Failed grafts then tried cultured skin: 3
Removal of chest nevus and breast buds (mastectomy) then needing breast implants in a girl: 2
Skin grafts of nevus around breast, leaving the breast buds intact, with severe scars of breasts: 1
Belly button removed and new one needed to be made: 4
Severe itching in scars: 2
Pigment seeping back after surgery: 13, and many more who didn't list.
Wound dehiscence (wound opened back up leaving a hole): 10
Keloids (big overgrown scars): 4
Hypertrophied scars (big or wide scars): 1
Contractures (wound draws up too tight): 10
Contractures moving belly button out of place: 3
Shoulder contracture (difficulty moving shoulder with severe scarring, which predisposes to early arthritis): 2
Neck contracture with possible early arthritis: 3
Hand contracture, loss of use of hand needing fix-up surgery: 1
Hip contracture (difficulty moving hip due to scars, which predisposes to early arthritis): 2
Early (done before newborn is 2 weeks old) curettage, which failed: 2
Collapsed lung with pneumonia after nevus surgery: 1
Osteomyelitis (bone infection) after nevus surgery: 2
Cultured skin (epidermal autografts) unusable (skin too thin, bleeding, springing "leaks" with normal activities): 2
Cultured skin shrinking: 2
Of these, pulling girl's nipples on each side into her armpit: 1
Depressed scar (scar sunken in leaving a crater): 3
Bald after scalp nevus surgery: 21 Of these, those using wigs or caps: 4 or having hair transplant: 1
Hair growing up instead of down after scalp surgery: 4
Hair too thin after expansion (can "see" scalp): 2
Frontalis (forehead) muscle excised with nevus, leaving numb, distorted area of face: 1
Rectal scarring from rectal nevus surgery causing incontinence: 2
Rectal scarring causing bleeding with constipation: 1
Wore splint for 1 year to help heal: 1
Wore special shirt for 1 year to help heal: 1
Wore Jobst garments for several years to help heal: 1
Members needing surgical revisions (extra surgeries to fix up bad results): 28
Failed laser (laser didn't help): 8
Laser worsened nevus (made it darker, yes, this does happen!): 6
Skull deformity after scalp nevus surgery: 1
Compartment syndrome from blocked IV nearly causing loss of arm during nevus surgery: 1
Malignant hyperthermia (life-threatening complication of surgical anesthesia): 1
Respiratory arrest in child during anesthesia: 1
Cardiopulmonary arrest in child during anesthesia, needing CPR: 1
Seizure after local anesthetic: 1
Child fighting medical procedures like "bucking bronco" or fighting going to the hospital: 4 and many more who didn't list.
Allergic reaction after surgery: 1
Allergic reaction to latex (rubber): 1
Tracheal narrowing (breathing tube scarred) from repeated tracheal tubes used during general anesthesia: 1
Tachycardia (too fast heart rate) during anesthesia: 1
Temporary memory loss after general anesthesia in adult: 1
Heart attack occurring with general anesthesia in child: 1
Delirium occurring after general anesthesia: 1
Medically induced coma on ventilator: 2
Allergic reaction with MRI sedation: 1
MRI abandoned after 4 veins "blown": 1

The good news is that no one has yet died of complications from anesthesia (yes, anesthesia can kill a person)! Considering all the anesthetics that nevus kids have had, this is wonderful news!

Chronic pain after skin grafts: 3
Night terrors in children after repeated surgeries: 2
Severe anxiety in children around hospitals: 4 and many more who didn't list...
Of these, number who get severe diarrhea before any medical procedures: 1
Post-traumatic stress disorder after repeated nevus surgeries: 2
Apnea (stopped breathing) after morphine for pain control: 1
Members abandoning surgical treatment before completion: 20, and many more who didn't list. Contrary to popular thought, children are not very resilient to the trauma of surgery. Many nevus adults mention being traumatized by their surgeries. We do survive it, but often with life-long psychological and emotional scars as well as the obvious physical scars...

And Some Good News:

Early curettage with good results: 1
Treatment of facial nevus with ruby laser and good results: 3
Itching improved after nevus removal: 1
Nodules and draining, cracking nevus removed:2 and more...
Members very happy with their surgical outcome: 8, and many more who didn't list it.... Members tend to dwell on the negative aspects, like humans everywhere, while some nevus members, especially those with smaller giant nevi, have really had wonderful results from surgical treatment....

A Sampling of Members with Most Numbers of Surgeries:

200 surgeries, our member record, in a person with a BTN, 10 of those to remove satellites
90 surgeries in another person with a BTN, from age 0 to 16
45 surgeries over 21 years, another group record, in a person with a facial nevus
17 surgeries and 88 hospital days in another
35 surgeries with a near-fatal infection
53 surgeries
47 surgeries
13 surgeries and 90 hospital days
25 surgeries
30 surgeries
39 surgeries with an open draining wound in the neck for the last 3 years
14 surgeries with 14 skin grafts
40 surgeries over 18 years
20 surgeries with serial excision, then grafts, then laser, then expanders and then abandoned surgery
40 surgeries and 1 year spent in the hospital
54 surgeries

and many, many members with 0 to 10 surgeries.... Nevus children have got to be one of the most surgerized groups of children in history!

Occupations of Nevus Adults:

Nevus people have entered many occupations. Some of those represented include the following:

Doctor: 4
Lawyer: 2
Nurse: 6
Pharmacist: 1
Teacher: 3
Biologist: 1
Engineer: 2
Counselor/social worker: 5
English professor: 1
Computer analyst: 2
Ski coach: 1
Web designer: 1
Horticulturist: 1
Environmentalist: 1
Speech therapist: 1

and we've had 2 cheerleaders in our group!

Much of our information is incomplete. If you feel your information is incomplete or if you would like to enter yourself or someone else into our database, please e-mail us at info@nevusnetwork.org Thanks!!


All Information Provided as a Public Service Without Medical or Legal Responsibility. The opinions expressed in the Nevus Network Newsletter are those of the writers and do not necessarily reflect the views of the Nevus Network or of the medical community at large. You must not act on the medical information provided by the Nevus Network but must consult your own personal physician for all medical advice. All information is of a general nature only and may or may not be applicable to you or your child's individual situation.

This page last updated on April 6, 2004.

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