Neurofibromas

Neurofibromas are benign nerve tumors. Many never need treatment, but when one causes pain, weakness or pressure on the spinal cord, careful surgery can help.

What Is a Neurofibroma?

A neurofibroma is a benign tumor that grows within a nerve. Unlike a schwannoma, which grows off to one side of a nerve, a neurofibroma grows among the nerve fibers themselves. Neurofibromas can occur in the skin, along peripheral nerves, or on the spinal nerve roots.

Most neurofibromas occur on their own in people without any genetic condition. People with neurofibromatosis type 1 (NF1) often have many neurofibromas, including a larger type called a plexiform neurofibroma that involves long segments or branches of nerves.

Types of Neurofibromas

• Cutaneous (skin) neurofibromas: soft bumps on or under the skin
• Localized neurofibromas: a single tumor on a nerve
• Plexiform neurofibromas: larger tumors spreading along nerves, almost always associated with NF1
• Spinal neurofibromas: on spinal nerve roots, sometimes passing through the bony opening in a “dumbbell” shape and pressing on the spinal cord

Symptoms

Common symptoms

• A soft lump on or under the skin
• Pain, numbness or tingling along the nerve
• Weakness in the muscles that nerve controls
• Back or neck pain with a spinal neurofibroma

Symptoms patients often ignore

• Café-au-lait spots (flat, light brown skin patches) or freckling in the armpits or groin, which can be signs of NF1
• Gradual balance problems or leg stiffness from spinal cord pressure
• A neurofibroma that suddenly becomes painful or grows

See a doctor promptly if a neurofibroma grows quickly, becomes hard or newly painful, or you develop new weakness. In people with NF1, these changes can rarely signal a malignant peripheral nerve sheath tumor. Sudden weakness, numbness in the groin or bladder changes need emergency care.

Causes and Risk Factors

• Neurofibromatosis type 1 (NF1): a genetic condition that causes multiple neurofibromas
• Sporadic: most single neurofibromas occur without a known cause

How We Diagnose Neurofibromas

• History and exam: including a skin exam for signs of NF1
• MRI with contrast: shows the tumor, the nerve involved and any spinal cord pressure
• EMG/nerve studies: to assess nerve function
• PET scan or biopsy: when a malignant change is a concern
• Genetic evaluation: when NF1 is suspected

Treatment Options

Observation

Most neurofibromas that aren’t causing problems are monitored with periodic exams and imaging.

Medication

For some people with NF1 and plexiform neurofibromas, targeted medications (MEK inhibitors) can shrink tumors. These are managed with an NF specialist.

When surgery makes sense

Surgery is recommended when a neurofibroma causes significant pain, weakness, spinal cord compression or disfigurement, or when a malignant tumor is suspected. Because neurofibromas grow within the nerve, the goal is to remove as much of the tumor as safely possible while preserving nerve function. For spinal neurofibromas pressing on the cord, surgery can often correct the problem (spinal cord tumor resection).

Why Choose Dr. Betsy Grunch for Neurofibromas

• Duke-trained: neurosurgical residency and spine research fellowship at Duke University School of Medicine, where she received the Spine Young Investigator Award
• Experience you can count on: in practice since 2013, performing 400 to 600 surgeries a year and more than 5,000 procedures over her career
• Precise, protective surgery: microsurgical technique with nerve monitoring to protect nerve and spinal cord function
• The right treatment for you: board-certified (FAANS, FACS, FCNS), she starts with the least invasive option that will work, and recommends surgery when it can correct the problem
• Clear answers: known online as Ladyspinedoc, she makes sure you understand your imaging and every option in front of you

What to Expect If You Need Surgery

Before surgery

You’ll meet with Dr. Grunch or one of her physician assistants to review your imaging and plan the procedure. Our team coordinates pre-operative testing and works with your other specialists when needed.

Procedure day

Surgery for a peripheral neurofibroma is often outpatient. Surgery for a spinal neurofibroma usually involves a hospital stay of one to a few days.

Recovery timeline

• Weeks 1-2: incision healing; light activity
• Weeks 2-6: gradual return to normal activities
• Months: nerve symptoms can continue to improve; ongoing monitoring for people with NF1

Frequently Asked Questions

Are neurofibromas cancer?

No, they are benign. In people with NF1, a small percentage of plexiform neurofibromas can turn into a malignant tumor over time, which is why changes should be checked.

Does having a neurofibroma mean I have NF1?

Not necessarily. Most people with a single neurofibroma don’t have NF1. Multiple neurofibromas or other signs may lead to a genetic evaluation.

Can a neurofibroma be completely removed?

Sometimes. Because it grows within the nerve, complete removal may risk nerve function, so surgery is tailored to protect the nerve.

Will it grow back?

Partially removed neurofibromas can regrow slowly, so follow-up is recommended.

What’s the difference between a neurofibroma and a schwannoma?

A schwannoma grows beside the nerve and can usually be removed completely. A neurofibroma grows within the nerve fibers. Learn more about nerve tumors.

Take the Next Step

Hearing that you have a nerve tumor is frightening. Whether you need a diagnosis, a treatment plan or a second opinion, Dr. Grunch and the Southern Neurosurgery team are here to help you understand your options.

Call 470-293-9800 to schedule an appointment or contact us online.

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We see patients across metro Atlanta and North Georgia at our offices in Gainesville, Sandy Springs and South Atlanta (Riverdale). Find the office nearest you.

This page is for educational purposes only and is not a substitute for medical advice. If you have sudden weakness, numbness in the groin, or bladder or bowel changes, call 911 or go to the nearest emergency room.