NEUROFIBROMA SPINAL TUMORS

Questions and Answers

What is Neurofibromatosis Type 1?

• About 1 in 3,300 babies are born with Neurofibromatosis Type 1 (NF1).
• Café-au-lait spots: Large, progressively growing areas of skin that are light brown or coffee in color.
• The iris, the colorful portion of your child’s eye, may have benign growths.
• optic pathway gliomas, tumors of the visual nerve.

Who is Impacted by Spinal Neurofibromas?

A person is born with a neurofibroma, but it can take years for the tumor to appear. Consequently, these tumors usually become prominent during puberty. One out of about 3,000 has neurofibromatosis type 1 (NF1) is usually diagnosed by age 10. Finally, about 25% of these children develop tumors large enough to cause serious medical problems.

What are Spinal Neurofibroma Symptoms?

The symptoms of spinal neurofibroma tumors can vary depending on the location and size of the tumor. Some common symptoms may include:

• Back or neck pain: Tumors pressing against spinal nerves or surrounding structures can cause localized pain in the affected area.
• Numbness or weakness: If the tumor compresses nerves, it may lead to numbness, tingling, or muscle weakness in the corresponding area.
• Loss of bowel or bladder control: In rare cases where the tumor affects the lower spinal cord, it can lead to problems with bowel or bladder function.

What Causes Spinal Neurofibromas?

Neurofibromas are a sign of neurofibromatosis Type 1 (NF1), which is brought on by mutations in the NF1 gene. For instance, the NF1 gene contains the information needed to produce the neurofibromin protein. Additionally, a tumor suppressor protein called neurofibromin often stops cells from developing or dividing too fast or uncontrolled. It accomplishes this by controlling a protein, a protein that promotes cell growth and division. The NF1 gene can stop preventing cell development when it is altered, allowing cells to proliferate unchecked and develop into tumors. If one parent carries the genetic mutation, then a person may inherit NF1.  Finally, about 50% of NF1 patients don’t have any family members who have the condition.

Risk Factors

Your chance of getting neurofibroma may rise as a result of the variables listed below:

• Being between the ages of 20 and 40.
• Having both types 1 and 2 of the hereditary disease neurofibromatosis
• A family history of the condition is the main risk factor for neurofibromas. About half of those with NF1 and NF2 received the condition from a parent who had it. People with NF1 and NF2 who do not have afflicted relatives are more likely to have a novel gene mutation.
• Both NF1 and NF2 are autosomal dominant diseases, which means that there is a 50% probability that any kid of a parent with the ailment will inherit the genetic mutation.
• Schwannomatosis has an unclear hereditary pattern. At this time, 15% of people inherit schwannomatosis from a parent who has the condition.

Neurofibroma Diagnosis

To diagnose spinal neurofibroma tumors, a comprehensive evaluation is necessary. This typically includes the following:

• Medical history and physical examination: The doctor will review the patient’s medical history and conduct a physical examination to assess neurological function, reflexes, and muscle strength.
• Imaging tests: Imaging studies such as magnetic resonance imaging (MRI) or computed tomography (CT) scans are commonly used to visualize the spinal cord and detect the presence and location of tumors.
• Biopsy: In some cases, the surgeon will perform a biopsy to confirm the diagnosis. Basically, this involves the removal of a small tissue sample from the tumor for examination under a microscope.

Spinal Neurofibroma Treatment

A doctor can keep track of most neurofibromas with routine physical examinations, imaging tests, and, if necessary, biopsies. If you have neurofibromatosis, it is advisable to talk with an NF specialist about the long-term management of your illness. Inform your doctor if Neurofibromas can change in color, size, texture, or quantity, as well as if they start to hurt. A part of your body experiences new numbness or weakness. Because they restrict movement, cause aesthetic problems, or develop in uncomfortable or vulnerable places, neurofibromas have an impact on your quality of life.

The management of spinal neurofibroma tumors depends on several factors, including the size, location, and symptoms experienced by the patient. Treatment options may include:

• Observation: If the tumor is small and asymptomatic, the doctor may recommend regular monitoring without immediate intervention.
• Surgery: Surgeons will consider surgical removal of the tumor if it is causing significant symptoms or if there is concern about its growth. Our primary goal requires us to safely remove the tumor while preserving neurological function.
  • Laminectomy: This procedure involves removing a portion of the vertebral bone to access and excise the tumor. Post-surgery, the doctor will stabilize the remaining vertebrae.
  • Biopsy: After removal, the tumor is biopsied to determine if it is cancerous, guiding further treatment decisions.
  • Nerve Graft: In some cases, a nerve graft may be performed. Here, a damaged nerve is replaced with a healthy section from another part of the body to restore function.
• Radiation Therapy: In some cases, our doctors will recommend radiation therapy—especially for tumors that appear difficult to access surgically or for patients who should not undergo surgery.
• Medications: Doctors may prescribe medications, such as pain relievers or medications to manage associated symptoms like neuropathic pain, to improve the patient’s comfort and quality of life.

This comprehensive approach ensures that each patient receives personalized care tailored to their specific condition and health needs.

What Negative Consequences Might Neurofibroma Surgery Cause?

The adverse effects of neurofibroma surgery vary depending on the type of surgery. For instance, the negative effects of surgery to remove a tumor from your spine will be different than surgery to remove a tumor from your skin. If you intend to have neurofibroma surgery, inquire with your doctor about the potential adverse effects.

Support Options for Patients Seeking Care for Spinal Neurofibromas

Navigating the complexities of spinal neurofibromas can feel overwhelming, but there are a wealth of support options available to assist you on your journey to wellness. Here’s a look at what’s accessible:

In-Person and Virtual Consultations

• Local Specialists: Utilize online search tools to pinpoint neuroscience specialists in your area. These professionals can provide personalized care tailored to your condition.
• Telehealth Services: Many healthcare providers now offer virtual consultations, giving you access to expert advice and support from the comfort of your home.

Comprehensive Care Teams

• Multidisciplinary Approach: Teams often include neurologists, neurosurgeons, and oncologists to ensure comprehensive treatment. This collaborative effort ensures every aspect of your condition is addressed.
• Patient Coordinators: These professionals help streamline your care journey, making appointments and coordinating between different specialists.

Support Networks and Resources

• Patient Support Groups: Connect with others facing similar challenges through both online and in-person groups. Sharing experiences and advice can be invaluable.
• Educational Resources: Access a plethora of articles, webinars, and guides from reputable medical organizations to better understand your condition.

Personalized Treatment Plans

• Cutting-edge Treatments: Explore the latest advancements in the treatment of spinal neurofibromas, including minimally invasive surgeries and innovative therapies.
• Holistic Support: From physical therapy to stress management techniques, benefit from a holistic approach to manage symptoms and improve quality of life.

These resources are designed to provide comprehensive support and foster a community where you can feel informed and empowered in your healthcare choices.

Finding a Surgeon with the expertise to remove Spinal Neurofibroma Tumors

The Surgeons at the Southwest Scoliosis and Spine Institute, with offices in Dallas, Plano, and Frisco, Texas, have the requisite expertise and the skills necessary to successfully remove Spinal Neurofibroma Tumors.  Finally, the removal is a complex procedure and patients should be confident that they are in the very best hands with the surgeons at our institute.  Call today and schedule an appointment within 24 hours.

For those seeking specialists beyond our institute, finding the right neuroscience specialist is crucial for treating spinal neurofibromas. Utilize online search tools to explore a wide range of qualified professionals in your area. These tools can help you assess credentials, patient reviews, and treatment options to ensure you make an informed choice. By combining the expertise of the Southwest Scoliosis and Spine Institute with accessible search technology, you can confidently move forward in addressing your health needs.

____________________

American Journal of Roentgenology: Spinal Neurofibroma Tumors