Neurofibromas are a type of peripheral nervous system tumor. Up to 5% of spinal tumors are neurofibromas. These tumors form in the peripheral nerve sheath and are made up of a mix of cells, including Schwann cells.
There are three main types:
- Diffuse neurofibromas can be on the skin or grow much deeper down. They usually appear as discolored skin.
- Localized neurofibromas, also called cutaneous neurofibromas, are smaller, localized bumps just under the skin. These are the most common types of neurofibromas.
- Plexiform neurofibromas affect multiple nerves and can be internal or appear as a mass under the skin.
Neurofibromas are graded, not staged, like many types of cancer. Most neurofibromas are grade 1, or low-grade tumors. Most are noncancerous and grow slowly. They are more likely to be successfully treated with surgery and not come back.
Accessing the variety of specialists needed for spine care can be complicated. The UK HealthCare Comprehensive Spine Center makes it simple by bringing together a team of all the specialists you may need. Within one program, you have access to all our specialties: physical medicine and rehabilitation, interventional pain medicine, orthopaedic surgery and neurosurgery.
For spinal tumors, we may also work closely with experts at the UK Markey Cancer Center. We will evaluate you at your first appointment to determine the best treatment path for your specific needs.
Neurofibromas often have no symptoms. You may see visible bumps that do not cause pain. Often, people decide to remove neurofibromas only for cosmetic reasons. However, some neurofibromas, especially the plexiform type, may cause discomfort or other symptoms, including:
- Pain
- Discolored skin
- Irritation or itchiness
- Muscle weakness
- Numbness
- Tingling (pins and needles)
- Thickened skin
How severe your symptoms are may not correlate with the tumor size. Some smaller neurofibromas can cause extreme pain while larger ones can remain with no symptoms.
Neurofibromas are caused by a mutation in the NF1 gene, which helps your body make a protein called neurofibromin. This protein normally helps your body work with other cells to prevent tumors from forming. If your NF1 gene is slightly off, you could develop a neurofibroma.
Men and women are equally likely to get neurofibromas, as are people of all races and ethnicities. Children younger than 5 are more likely to get plexiform neurofibromas.
Some people with NF1 gene mutations have a genetic condition called neurofibromatosis type 1 (NF1) present at birth. Around 1 in 3,000 people worldwide has NF1. This condition dramatically increases your chances of developing neurofibromas.
Around 50% of people with NF1 develop plexiform neurofibromas. In about 15% of these people, the neurofibromas will become cancerous peripheral nerve sheath tumors (MPNST), an aggressive and hard-to-treat cancer.
Your journey to better spine health begins at home. Before you visit UK HealthCare for spine pain, we review your medical records. We may contact you with follow-up questions. We then discuss your case as a team. Based on these conversations, we determine which specialists will best meet your needs.
Next, we schedule your appointment. To provide you with the best care possible, you may need to meet with multiple providers. This helps us meet all your care needs in a timely manner.
During your first visit, we answer questions and provide information to help you better understand your condition. We also work to find out what is causing your symptoms and develop a treatment plan.
In most cases, we start with non-surgical treatment, such as lifestyle changes and physical therapy. Spine issues that don’t improve with this approach may require other treatment, including pain management and surgical intervention.
When coming to your first appointment, plan to do the following:
- Arrive early. You may need to fill out paperwork when you arrive. Getting to your appointment early gives you time to complete paperwork without feeling rushed.
- Bring a current list of medicines or supplements you take. You should also list any surgeries you’ve had, symptoms you’ve experienced and other past health issues.
- Dress comfortably. Working toward a diagnosis takes time. Comfortable clothes help you stay relaxed and attentive throughout your visit. They also make it easier to perform your physical exam.
- Eat and drink as directed. You may need to have imaging or other tests during your first visit. If you need to adjust your eating, drinking or medicines before a test, a team member will call to explain what you need to do leading up to your visit.
- Have your insurance information on hand. UK HealthCare accepts most insurers, and financial assistance is available.
- Bring a family member or friend with you. This person can help take notes and ask questions you may not think of asking.
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