Neurofibroma

A neurofibroma might cause no symptoms. If symptoms occur, they’re usually mild. When a neurofibroma grows on or under the skin, symptoms may include:

• A bump on the skin. The bump may be the color of your skin or pink or tan.
• Pain.
• Bleeding.

If a neurofibroma becomes large or presses against or grows on a nerve, symptoms may include:

• Pain.
• Tingling.
• Numbness or weakness.
• Change in appearance when a large neurofibroma is on the face.

Some people with neurofibromas have a genetic condition known as neurofibromatosis type 1 (NF1). A person with NF1 may have many neurofibromas. The number of neurofibromas increases with age.

A tumor that involves many nerves, known as a plexiform neurofibroma, can occur in a person with NF1. This type of neurofibroma can grow large and cause pain. It also can become cancerous.

The only known risk factor for neurofibromas is having the genetic condition known as neurofibromatosis type 1 (NF1). People with NF1 have several neurofibromas, along with other symptoms. In about half of the people with NF1, the disease was passed down from a parent. However, most people with neurofibromas don’t have NF1.

Neurofibroma treatment isn’t needed for a single tumor with no symptoms. Healthcare professionals usually monitor the neurofibroma. Surgery may be needed if the tumor is causing symptoms or for cosmetic reasons. Treatment may include:

• Monitoring. Your healthcare professional may recommend observation of a small neurofibroma that causes no symptoms. Monitoring also may be recommended if the neurofibroma causes symptoms but is located in an area that makes it hard to remove. Observation includes regular checkups and imaging tests to see if the tumor is growing.
• Medicine to treat a plexiform neurofibroma. Selumetinib (Koselugo) has been approved to treat a plexiform neurofibroma in children with neurofibromatosis type 1. A plexiform neurofibroma grows on many nerves. The medicine can shrink the tumor.

• Surgery to remove the tumor. Symptoms can be relieved by removing all or part of a neurofibroma that’s pressing on nearby tissue or damaging organs. The type of surgery depends on the location and size of the tumor. The type of surgery also depends on whether the neurofibroma is intertwined with more than one nerve. The goal of surgery is to remove as much of the tumor as possible without causing further nerve damage.

  After surgery, you may need physical rehabilitation. Physical therapists and occupational therapists can guide you through exercises that keep your muscles and joints active. Rehabilitation also helps prevent stiffness and restore your function and feeling.

• Clinical trials. You may qualify for a clinical trial testing an experimental treatment.

It’s a good idea to prepare for your appointment to make the most of your time with your healthcare professional.

What you can do

• Write down details of your symptoms, including any triggers that may have caused you to faint.
• Make a list of all medicines, vitamins and supplements you’re taking.
• Write down questions you want to ask, including questions about potential tests and treatments.

What to expect from your doctor

Questions your healthcare professional might ask include:

• What were you doing just before you fainted?
• What symptoms, if any, did you experience before you fainted?
• Have you ever fainted before? If yes, what were you doing before you fainted then?
• Have you recently started taking a new medicine?
• Have you ever had a head injury?
• Has anyone in your family died suddenly of a heart condition?