Neurofibromatosis can't be cured, but treatments are available for your signs and symptoms. Generally, the sooner you or your child is under the care of a doctor trained in treating neurofibromatosis, the better the outcome.
If your child has NF1, your doctor is likely to recommend yearly age-appropriate checkups to:
- Assess your child's skin for new neurofibromas or changes in existing ones
- Check for signs of high blood pressure
- Evaluate your child's growth and development — including height, weight and head circumference — according to growth charts available for children with NF1
- Check for signs of early puberty
- Evaluate your child for any skeletal changes and abnormalities
- Assess your child's learning development and progress in school
- Obtain a complete eye examination
Contact your doctor promptly if you notice any changes in signs or symptoms between visits. It's important to rule out the possibility of a cancerous tumor and to obtain appropriate treatment at an early stage.
Surgery and other procedures
Your doctor might recommend surgery or other procedures to treat severe symptoms or complications of neurofibromatosis.
- Surgery to remove tumors. Symptoms can be relieved by removing all or part of tumors that are compressing nearby tissue or damaging organs. If you have NF2 and have experienced hearing loss, brainstem compression or tumor growth, your doctor might recommend surgery to remove acoustic neuromas that are causing your problems. Complete removal of schwannomas in people with schwannomatosis can ease pain substantially.
- Stereotactic radiosurgery. This procedure delivers radiation precisely to your tumor and doesn't require an incision. Stereotactic radiosurgery might be an option to remove acoustic neuromas if you have NF2. Stereotactic radiosurgery can help preserve your hearing.
- Auditory brainstem implants and cochlear implants. These devices might help improve your hearing if you have NF2 and hearing loss.
Malignant tumors and other cancers associated with neurofibromatosis are treated with standard cancer therapies, such as surgery, chemotherapy and radiation therapy. Early diagnosis and treatment are the most important factors resulting in good outcome.
Managing pain is an important part of treatment for schwannomatosis. Your doctor might recommend:
- Gabapentin (Neurotin) or pregabalin (Lyrica) for nerve pain
- Tricyclic antidepressants such as amitriptyline
- Serotonin and norepinephrine reuptake inhibitors such as duloxetine (Cymbalta)
- Epilepsy medications such as topiramate (Topamax) or carbamazepine (Carbatrol, Tegretol)