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As one of the oldest and most experienced neurofibromatosis (NF) programs in the United States, we offer patients:
NF is usually diagnosed by examination and identification of clinical signs. Skin and eye examinations are essential for diagnosing NF1, and radiologic examination is essential for diagnosing NF2. Genetic testing is not usually necessary for diagnosis but may be helpful in identifying children who do not yet show signs of NF.
Most patients with NF have only mild-to-moderate symptoms and do not require active treatment. We work to anticipate and identify problems commonly associated with NF including neurofibromas/schwannomas, learning disability, attention-deficit hyperactivity disorder, headache, osteoporosis, and collaborate with the appropriate clinicians to manage these conditions.
We are active participants in studies of new drugs designed to shrink tumors or stop tumor growth, and our involvement in clinical investigation allows us to bring new treatments to our patients as quickly as possible.
Up to 10 percent of people diagnosed with NF1 develop malignant (cancerous) tumors during their lifetime. We collaborate with our colleagues in the Center for Sarcoma and Connective Tissue Oncology, one of the oldest, largest, and most experienced sarcoma treatment programs in the country, to provide comprehensive care for these patients.
People with NF are often concerned about whether other members of their family will also develop NF, and prospective parents may want counseling before they attempt a pregnancy. We provide genetic counseling to help patients make decisions about whether and how to pursue genetic testing. We refer prospective parents to the Massachusetts General Hospital Fertility Center's Preimplantation Genetic Diagnosis (PGD) Program, which helps couples with an increased risk for a specific genetic abnormality to have a child unaffected by that particular disease.
Depending on your symptoms, surgery may be beneficial to improve functionality, alleviate pain or address significant cosmetic concerns.
We offer specialized surgery for vestibular schwannomas (previously known as acoustic neuromas) associated with NF 2 and perform the highest volume of these complex operations in New England.
Together with our surgical colleagues at the Massachusetts Eye and Ear Infirmary, we offer an implantable prosthesis (auditory brainstem implant, ABI) that helps patients regain hearing loss from vestibular schwannomas surgery.
For patients who develop NF-associated cancers, our radiation oncologists offer a range of therapies designed to shrink or destroy tumors while protecting normal tissue. Advanced technologies include:
We work with the Center for Neurofibromatosis and Allied Disorders, a collaboration of NF physician-scientists, to study the mechanisms, variations, and best treatments for NF. Promising areas of inquiry include:
Your treatment team is a multidisciplinary group of brain and central nervous system cancer experts.
Nerve sheath tumors (non-cancerous tumors of nerves) can arise anywhere in the body, and we collaborate with other clinical services throughout Massachusetts General Hospital including orthopaedic surgeons, ophthalmologists, ear, nose, and throat specialists, dermatologists, endocrinologists, plastic surgeons, audiologists, pain management specialists, learning specialists, and others to provide comprehensive, integrated care for every patient.
We are active participants in investigation of new therapies, including chemotherapy for malignant tumors, targeted agents such as immunomodulators and anti-angiogenesis drugs to shrink or stop tumor growth and laser removal of tumors.
Phone: (617) 726-5130
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