Why Should I Use a Specialist for Neurofibromatosis?

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Finding a specialist to diagnose and treat neurofibromatosis (NF) is essential for optimal management of the disease. A specialist has undergone extensive education about a particular condition, pays close attention to research study outcomes and is aware of the latest clinical medical information for treatments, medications and procedures.

Each disease has unique complexities and progression patterns. A specialist is very familiar with these nuances and can look for conditions related to the disease. For example, conditions associated with neurofibromatosis include blood pressure, kidney issues, certain cancers, bone deformities, etc. In addition, growing tumors can displace normal tissue and organs or press on nearby body parts, causing pain or malformation. Detecting these related conditions early can prevent additional damage to the body and make treatment easier.

How is Neurofibromatosis Diagnosed?

A doctor diagnoses neurofibromatosis by observing symptoms and reviewing patient and family medical history and test results. Testing for neurofibromatosis may include imaging scans, blood tests and genetic tests. Diagnosing neurofibromatosis also means ruling out related or similar diseases. A specialist will be able to note the subtle differences between NF and related disorders and conditions to make a correct diagnosis.

Getting a diagnosis is also important to healthcare insurers. Specific diagnostic codes must be correctly applied when submitting claims to insurance companies. This helps ensure accurate reimbursement or procedure insurance coverage. Removal of NF tumors is frequently covered by most insurance plans. NF tumors on the skin vary in shape and location, can grow quickly and cause the following complications and more throughout the body:

• Cosmetic Issues
• Pain
• Numbness
• Vision Problems
• Range of Motion Issues

How is a Plexiform Neurofibroma Different than Other Skin Growths?

Patients with neurofibromatosis can have many different types of skin tumors, including large and progressive plexiform neuromas. In addition, tumors can vary in size and shape and how deeply they grow under the skin. It is vital to have a specialist plastic surgeon remove these skin growths because they may extend much more deeply than it appears from the skin surface.

While all surgeries carry some risk, neurofibroma removal carries added risk because the tumors can intertwine into fat layers, excrete substances that cause additional bleeding in nearby tissue or be positioned in a way that may cause permanent damage to surrounding nerves during removal. Many doctors can perform skin growth removal or electrosurgery on skin tags and other conditions, but expert knowledge of NF tumors beyond that of a dermatologist is critical to avoiding risk and helping increase the likelihood of a successful outcome.

Dr. Weinberg is a plastic surgeon specializing in the removal of neurofibromatosis tumors. He is a pioneer in the electrodesiccation method of tumor removal and has trained many other physicians in this specialty. He will help you consider the risks and benefits of plastic surgery from a neurofibromatosis expert standpoint.

Do I Still Need a Specialist for Mild Neurofibromatosis or a Solitary Neurofibroma?

Yes, and here is why: NF tumors are not always easy to spot, especially in children. The first symptom could be just a bump or discoloration of the skin. Sometimes it is important to remove tumors before they get too large. If a neurofibromatosis tumor removal is incomplete or done incorrectly, the tumor may grow back and require additional treatment. Having an experienced plastic surgeon and neurofibroma specialist perform the surgery ensures that the correct techniques will be used to help avoid scarring and other skin contour issues. A plastic surgeon may also combine several techniques to minimize the cosmetic effects of neurofibromatosis and achieve the best results for each patient. Our goal is always to improve your condition and not cause further problems.

We know that most neurofibromatosis tumors are benign (non-cancerous). However, a small percentage do become cancerous. A neurofibroma specialist plastic surgeon has many years of experience observing the signs of cancerous tissue and can determine if pathology studies are indicated.

Patients with all types of neurofibromatosis should have their care coordinated among several specialists. Dr. Weinberg and his educated and compassionate staff will work closely with your other doctors to help achieve the best care possible. He collaborates with other neurofibromatosis specialists and can help you find additional medical resources.