Plexiform neurofibromas are complex tumors that grow along nerve tissue, often causing pain, disfigurement, or neurological symptoms. Led by Dr. Waner and Dr. O, the Vascular Birthmark Institute specializes in diagnosing and treating these congenital tumors to limit complications and enhance quality of life with expert, compassionate care tailored to each patient.
What Are Plexiform Neurofibromas?
Plexiform neurofibromas are congenital tumors that develop within the nerve sheath, often affecting multiple branches of a nerve. They are commonly associated with neurofibromatosis type 1 (NF1) and can grow extensively along the nerves in areas such as the head, neck, spine, and limbs. These tumors may cause symptoms like skin discoloration, freckling, nerve pain, and functional impairment, depending on their size and location. Because they can become disfiguring and carry a risk of malignancy, early diagnosis and management are essential.
Signs & Symptoms of Plexiform Neurofibromas:
- Presence of multiple café-au-lait (light brown) skin patches at birth or during early childhood
- Freckling in areas such as the groin or armpits
- Soft, often enlarged masses under the skin
- Pain or tenderness in the affected area
- Numbness, weakness, or functional loss if nerves are compressed
- Visible swelling or disfigurement, especially in the head, neck, spine, or limbs
- Risk of tumor growth leading to compression of surrounding tissues and organs
- Increased chance (approximately 10%) of malignant transformation into cancer
Treatments for Plexiform Neurofibromas
At the Vascular Birthmark Institute, we understand that every case of plexiform neurofibroma is unique. After a diagnosis, which often includes a comprehensive physical examination, imaging studies such as MRI, and a review of your symptoms, we create a personalized treatment plan.
Depending on the tumor’s size, location, and impact on nearby tissues, your treatment options may include surgery or other supportive therapies.
Surgical Removal
If your plexiform neurofibroma is accessible and does not intertwine extensively with vital nerves or organs, surgical removal may be recommended. During surgery, our doctors carefully excise as much of the tumor as possible without damaging healthy nerve tissue. Because these tumors often infiltrate nerves deeply, complete removal may not always be feasible. However, even partial removal can reduce symptoms such as pain, disfigurement, and functional impairment.
Partial Resection
In cases where the tumor wraps around critical structures like the spine or major nerve bundles, complete excision could pose significant risks. If this is your situation, a partial resection may be performed. This means only a portion of the tumor is removed — enough to relieve pressure on nerves and organs and to improve your mobility while avoiding unnecessary complications.
Monitoring and Medical Management
When surgery is not immediately necessary or possible, we may recommend careful monitoring combined with medical management. This involves regular imaging studies to track tumor growth and symptoms over time. If you experience pain or functional problems, medications such as pain relievers, anti-inflammatory drugs, or other supportive therapies may be used to manage your symptoms conservatively while we continue monitoring tumor growth.
Schedule Your Consultation
Vascular Birthmark Institute is a world-renowned center dedicated to diagnosing and treating complex vascular and congenital tumors like plexiform neurofibromas. Led by Dr. Waner and Dr. O, our team offers personalized care focusing on preserving function and improving quality of life. If you or your child has been diagnosed with a plexiform neurofibroma, expert evaluation can make a significant difference. We invite you to schedule a consultation with us to explore your treatment options and receive the specialized care you deserve.
Contact Vascular Birthmark Institute Today
