My Child Has a Neurofibroma. Now What?

Neurofibromas are nerve tumors that develop on just about any nerve in the body. In children, it’s usually a sign of neurofibromatosis type 1, a genetic condition that is characterized by benign nerve tumors, as well as bone and hormone problems. The tumors are usually noncancerous (benign). About 1 in 3,000 people has the genetic mutation associated with the condition.

In most cases of neurofibromatosis, the condition causes only mild symptoms and kids can live normal lives. The condition also has a version known as neurofibromatosis type 2, which is much rarer. 

The tumors don’t cause symptoms unless they press against the nerve, causing pain or numbness. At The Aesthetic Surgery Center, our surgeon Elliott H. Rose, MD, sees patients with neurofibromas who do need surgery to remove problematic neurofibromas.

If your child has been diagnosed with a neurofibroma or neurofibromatosis, here’s what you need to know.

Symptoms of neurofibromatosis

Children with neurofibromatosis usually develop skin spots, or cafe-au-lait spots, that are darker than their surrounding skin and more than ¼-inch wide by their first birthday. They may also show developmental delays when it comes to talking, walking, and other milestones. 

Their head may look too large for their body and they may be of shorter stature. Children may also have scoliosis of the spine. Another major symptom is the development of neurofibromas, bumps in and under the skin. These neurofibromas can cause appearance problems, and when they do, Dr. Rose is available to help.

A neurofibroma can also develop with no apparent cause. If they’re symptomatic, large, or unsightly, you may choose to have them removed with plastic surgery.

Treatment for a neurofibroma

If your child has a neurofriboma, they should be checked for neurofibromatosis. If they have this condition, they’ll need a host of specialists on their care team, including:

• Neurologist for problems with the nerves, spinal cord, and brain
• Oncologist to evaluate tumors that have the potential to become cancerous
• Opthamalogist to treat tumors on the eyes
• Orthopedist for possible bone problems
• Endocrinologist for hormone problems
• Behavioral health specialist to help with possible learning and behavior issues

You should also have a plastic surgeon on this team to treat appearance concerns. Dr. Rose has the experience and expertise to handle neurofibromas, even those in especially delicate locations like the face. 

Surgery for neurofibromas

Neurofibromas smaller than an inch in size aren’t usually treated, unless they’re painful or disfiguring. Your child undergoes regular monitoring to make sure the tumor doesn’t grow. 

If your child has a painful or unsightly neurofibroma, these symptoms can be resolved by removing all or part of the tumor. The goal is to prevent further nerve damage and remove as much of the tumor as possible. 

Depending on where the neurofibroma is located, your child may need physical therapy afterwards. If you need recommendations for a provider, our office can help.

If your child has been diagnosed with neurofibromatosis or a neurofibroma, you need a skilled plastic surgeon on their care team. Dr. Elliott Rose is just that surgeon. Call our office today or use the online tool to schedule an appointment.