Treatment for Neurofibromatosis

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Getting a diagnosis of neurofibromatosis is overwhelming for patients and their families. Seeing a physician specializing in neurofibromatosis (NF) can make a big difference in successfully managing the disease. This rare and complex disorder has many interconnected medical issues that both patients and physicians should fully understand before moving forward with any treatment. An NF specialist has additional disease training and education and closely follows research study outcomes, medication trials and new treatment techniques.

A neurofibromatosis expert has specialized knowledge of every facet of the disorder. Related medical conditions and the additional risks associated with NF will factor into the decision to hold off or move forward with tumor removal or other medical treatments. Currently, there is no cure for the three main types of neurofibromatosis (NF 1, NF 2 and Schwannomatosis). Treatment is designed to help the disorder’s symptoms, such as pain and disfigurement, or to prevent damage to the body from tumor enlargement. Treatments for neurofibromatosis may include the following:

• Surgery
• Electrodesiccation
• Medication
• Chemotherapy
• Observation

Neurofibromatosis Skin Lesions

Dr. Weinberg is an experienced plastic surgeon who specializes in neurofibromatosis. He is one of an elite group of surgeons around the United States that is qualified to treat a large number of tumors at the same time using a process called electrodesiccation.

The neurofibromatosis skin lesions, bumps, growths and tumors associated with the disease can be disfiguring or painful. These growths can also affect nearby organs, nerves and bones. An expert will know the best time to remove them. For some patients, earlier is better. For other patients, the risks of surgical complications may outweigh the benefits. A doctor will consider many factors before deciding if surgery is an option.

Removing Neurofibromas

Some NF patients have mild symptoms and may have a small, solitary neurofibroma. Other patients may have hundreds of tumors or several large tumors. Once a patient is diagnosed with one of the three types of neurofibromatosis, a doctor will evaluate the tumors for treatment. Evaluation includes examining the tumors, and imaging tests may be required to see how deeply the tumors extend beneath the skin surface and their involvement with nearby skin layers, nerves or organs. Many neurofibromas have entwining roots that make surgical removal difficult or impossible. NF 1 treatment, NF 2 treatment and Schwannomatosis treatment have different surgical considerations and should be evaluated by an expert.

For many NF skin growths, Dr. Weinberg uses the electrodesiccation method of removal. This technique involves touching an instrument to the tumor and allowing a small current to heat the moisture inside the tumor. The tumor then dries out (desiccates) and shrinks. Electrodesiccation of just a few growths can usually be performed in the office with a local anesthetic. However, the removal of a large number of tumors at the same time is typically performed in the hospital under general anesthesia. Sometimes, a patient may require both traditional surgical and electrodesiccation methods to remove neurofibromas.

Surgical Challenges: Neurofibromatosis Face, Head and Neck Tumors

Skin tumors may grow slowly for years before they begin to enlarge. Dr. Weinberg will evaluate and test tumors to ensure they are not part of the small percentage that becomes cancerous. Imaging scans may help determine if the tumor “roots” extend into deep layers of tissue or wrap around delicate nerves or organs, making surgery much riskier. In addition to the invasiveness of some NF tumors, other factors to consider include whether growing tumors affect the patient’s range of motion, making it difficult for them to see, chew, or turn their neck. Again, the risks and potential benefits must be carefully weighed.

Another potential complication of neurofibromatosis surgery is that the tumors sometimes secrete a substance that makes surrounding blood vessels unable to clot, causing bleeding issues during surgery. Experienced NF surgeons are aware of this and the many other related disease management issues.

About Neurofibromatosis Surgery

Most surgery for neurofibromatosis tumor removal is well-tolerated by patients. However, sometimes, a complete removal is not possible without the risk of injury to nearby structures due to the nature and location of tumors. Incomplete removal means that a tumor may grow back and need to be treated again with traditional surgery or electrodesiccation. Other tumors may be tiny and not yet cause problems but continue to grow and need later treatment.

Dr. Weinberg will evaluate your skin tumors at regular intervals and check them for any changes. These regular visits are essential to manage any new symptoms that may emerge. Neurofibromatosis research is ongoing, and new findings are discovered all the time. Seeing a specialist enables patients to gain access to new and better treatments.

Contact our office to schedule an evaluation. Our knowledgeable and caring staff will help you get the best treatment for neurofibromatosis.