Neurofibroma
Symptoms
The symptoms and signs of a peripheral nerve tumor develop from direct effects on the main nerve or from the tumor pressing on nearby nerves, blood vessels or tissues. As the tumor grows, it may be more likely to cause signs and symptoms, although tumor size doesn't always determine effects.
Signs and symptoms of peripheral nerve tumors vary depending on the location of the tumors and which tissues are affected. They include:
- Swelling or a lump under your skin
- Pain, tingling or numbness
- Weakness or loss of function in the affected area
- Dizziness or loss of balance
When to see a doctor
See your doctor when you have any of the symptoms listed, especially if you have a lump that grows rapidly.
Causes
It's not clear why most peripheral nerve tumors develop. Some are linked to known inherited syndromes, such as neurofibromatosis (types 1 and 2) and schwannomatosis. Others may be caused by a malfunctioning gene or triggered by injury or surgery.
Risk factors
Peripheral nerve tumors are more common in people who have:
- Neurofibromatosis (types 1 and 2) and schwannomatosis. In these disorders, tumors develop on or near the nerves throughout the body. These tumors, which are frequently multiple, can lead to a variety of symptoms and signs depending on their location. These tumors are usually noncancerous.
- A history of radiation treatment. If you were exposed to radiation, you are at increased risk of peripheral nerve tumors years later.
Complications
Both noncancerous and cancerous peripheral nerve tumors can compress nerves, leading to complications, some of which may be permanent:
- Numbness and weakness in the affected area
- Loss of function in the affected area
- Difficulties with balance
- Pain
Coping and support
Dealing with the possibility of permanent complications of peripheral nerve tumors and deciding which treatment would be best for you can be quite stressful. Here are some suggestions you may find helpful:
- Educate yourself about peripheral nerve tumors. The more you know, the better prepared you'll be to make good choices about treatment. Besides talking to your doctor, you may want to talk to a counselor or a social worker. Or you may find it helpful to talk to other people who've had a condition like yours and learn more about their experiences during and after treatment.
Maintain a strong support system. Family and friends can help you as you go through this difficult time. Sometimes, though, you may find the concern and understanding of other people with a condition like yours especially comforting.
Your doctor or a social worker may be able to put you in touch with a support group.
Preparing for an appointment
If your primary care doctor thinks you have a peripheral nerve tumor, he or she may refer you to a doctor who specializes in disorders of the nervous system (neurologist) or a doctor trained in brain and nervous system surgery (neurosurgeon).
What you can do
Before the appointment, you might want to prepare a list of answers to the following questions:
- When did you first notice this problem?
- Has it worsened with time?
- Have your parents or siblings ever had similar symptoms?
- Do you have other medical problems?
- What medications or supplements do you take regularly?
- What surgeries have you had?
What to expect from your doctor
Your doctor may ask some of the following questions:
- Do you have pain? Where is it?
- Do you have any weakness, numbness or tingling?
- Have your symptoms been continuous or occasional?
- What treatments have you tried already for these problems?
Overview
A neurofibroma is a type of nerve tumor that forms soft bumps on or under the skin. A neurofibroma can develop within a major or minor nerve anywhere in the body. This common type of benign nerve tumor tends to form more centrally within the nerve. Sometimes it arises from several nerve bundles (plexiform neurofibroma).
Symptoms are often mild or absent. If the tumor presses against nerves or grows within them, you may experience pain or numbness in the affected area.
A neurofibroma is usually noncancerous (benign). Rarely, it can become cancerous (malignant).
Diagnosis
A neurofibroma can arise with no known cause, or it may appear in people with a genetic condition called neurofibromatosis type 1. These tumors are most often found in people ages 20 to 40 years.
Your doctor will diagnose a neurofibroma based on a physical examination, a discussion with you about your medical history, or the results of an imaging test such as a CT or MRI scan. These imaging studies can help pinpoint where the tumor is, find very small tumors, and identify what tissues are affected or nearby. Your doctor may have you undergo a PET scan to get an indication of whether it is benign. You may also have a biopsy done by a radiologist before surgery to diagnose the mass as being a neurofibroma.
Treatment
Neurofibroma treatment usually isn't needed for a single, small — less than an inch (about 2 centimeters) — tumor under the skin. Neurofibroma treatment usually involves monitoring or surgery.
- Monitoring. Your doctor may recommend observation of a tumor if it's in a place that makes removal difficult or if it's small and causes no problems. Observation includes regular checkups and imaging tests to see if your tumor is growing.
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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. What type of operation is performed depends on the location and size of your tumor and whether it's 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 specific exercises that keep your muscles and joints active, prevent stiffness, and help restore your function and feeling.
- Clinical trials. You may be eligible for a clinical trial testing an experimental treatment.