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Neurofibromas are small tumors of the nerve sheath, which is the tough outer layer that protects the more delicate nerve tissues inside. The majority of these tumors are benign but can still cause unwanted and even debilitating symptoms.

After a neurofibroma diagnosis, it is beneficial to learn as much as you can about your condition so you can understand the best treatment path for you.

Neurofibroma causes

Neurofibroma causes are generally unclear; it is unknown why neurofibroma occurs. Neurofibromas are made up of nerve fibers, blood vessels, Schwann cells, mast cells and fibroblasts. While all of these are normal components of a regular nerve structure, in the case of neurofibromas, they have developed in an unusual way, forming a tumor.

The related condition known as neurofibromatosis is linked to a genetic disorder also called NF1. This condition typically results in the development of multiple tumors throughout the body. Most of these tumors never cause an issue, however, when they grow on the nerve roots of the spine they can become problematic.

Symptoms of neurofibromas

There are a number of neurofibroma symptoms that can be associated with these tumors. They range from almost imperceptible to completely debilitating. This is not due to the tumor itself, but rather, the fact that it is placing pressure on a nerve or nerves, causing dysfunction.

Neurofibromas that occur superficially (such as on arms or thighs) can have milder symptoms, such as pain or itching. In some cases, they may grow large enough to require intervention, as they start to press against the nerve they’re attached to. Neurofibromas can also be sensitive to the touch and tight clothing can exacerbate those sensations.

When neurofibromas occur at the spinal nerve roots or within the spinal cord, they can be more problematic. Symptoms of spinal neurofibromas can include:

  • Pain in the back or neck and in the extremities. This pain can sometimes be mistaken for other issues, such as a ruptured disc or arthritis of the spine.
  • Numbness and tingling in the legs, arms, feet and hands. The loss of sensation or experiencing symptoms that can mimic a limb “falling asleep” is not uncommon.
  • Loss of coordination, especially when performing small motor skills or walking.
  • Bowel or bladder leakage or incontinence. A sense of urgency to relieve oneself can also occur.
  • On occasion, if the tumor is large enough or interferes with the vertebrae (the bones in your back), scoliosis (curvature of the spine) can occur.

Treatment for neurofibromas

Treatment for a neurofibroma depends on the location of your tumor, its rate of growth and any noticeable symptoms.

Conservative or non-surgical treatment is typically the first action taken if the tumor is not causing problems. Your doctor can help you determine if this is the best place to start. This consists of:

Observation and Monitoring

If a spinal neurofibroma tumor is small, unobtrusive and not causing symptoms, your doctor may recommend that it is regularly monitored through the use of MRIs (Magnetic Resonance Imaging). MRIs allow for a detailed picture to be created using radio waves and a strong magnetic field.

The advantage to the observation of the tumors is that any changes can be tracked and, if need be, the tumor can be considered for surgical removal. Another benefit of this type of approach is that other tumors may be found the process and also placed under observation.

In cases where the neurofibroma is large or is pressing against a nerve, more significant treatment is often recommended. This consists of:

Surgical Removal

Neurofibromas that are dwelling on the nerve roots in the spine or even the spinal cord itself can usually be removed using less invasive surgical techniques.

When you are referred for spinal neurofibroma surgery, it’s helpful to know what to expect. Initially, you may need to have one or more imaging studies done using MRI or CT scan (Computerized Tomography). Both of these diagnostics create a highly-detailed image of the tumor and the structures it is on and around. This gives your doctors an excellent idea of what to expect when operating and to come up with a surgical plan prior to your procedure date. If there are issues with the bones or muscles, this can also be seen on these studies.

The surgery itself is done under general anesthesia. This means you will be asleep during the procedure, allowing you to remain unaware of the surgery as it is being performed. Your surgeon will make one or more small incisions near the tumor or tumors, through which he can pass an instrument known as an endoscope. This specialized microscope allows surgeons to easily visualize the tumor and the structures it is adjacent to and growing on.

Specialized instruments will be used to remove the tumor and repair the nerve sheath if needed. Because the muscles and surrounding tissues aren’t compromised, this is a highly preferred method. It speeds recovery and allows for a much more precise excision of the tumor.

Recovery time from the surgery itself is usually fairly short in comparison to many surgical procedures. Two to four weeks is frequently the duration of recovery for most individuals.

While neurofibroma causes are unclear, understanding your neurofibroma diagnosis and what you can do about it, is the first step in getting back to your active lifestyle. If you live in the New Jersey or Tristate area, be sure to choose a board-certified surgeon close to home. This will eliminate the stress of needing to travel for appropriate care.