After an assessment of each patient’s needs, our experienced physicians develop a detailed care plan. Because of the variable nature of NF, some patients require no more than an annual neurological evaluation, blood pressure monitoring, and imaging or hearing evaluations. Other patients may have persistent and complex medical issues.
The Neurofibromatosis Program is made up of physicians who are specialists in a variety of disciplines. For example, the University of Chicago Medicine has orthopaedic surgeons to help with the management of spinal deformities, radiologists who provide state-of-the art imaging, and neurologists and neurosurgeons who are skilled in the treatment of tumors affecting the nervous system and the timing of neurological surgery. Physicians at the University of Chicago also have special expertise in the tumors that can cause unique complications in adults, including malignant peripheral nerve sheath tumors and pheochromocytoma.
Advanced Medical, Surgical Expertise
The key to successful management of NF-related disorders is regular follow up, often with imaging and other testing to check for complications of NF before they become advanced. Having treated more than 1,300 patients with NF, the NF team is experienced in detecting many of the complications simply on the basis of careful physical exams. In some instances however, especially with NF-2, regular imaging and other testing is important and the NF team works with radiologists and other specialists to interpret testing results. The NF clinic can direct patients to experienced physicians who provide additional subspecialty treatment as needed.
Our understanding of the NF-related disorders is rapidly changing. Currently, treatments are primarily surgical. Drug treatments are being evaluated in clinical trials, so it is likely that chemotherapeutic approaches will be available in the future. The multi-disciplinary approach of our NF team is uniquely prepared to coordinate such care.
A second key to the successful management of NF is education. Because we are actively involved in research and clinical trials, the NF team can keep you informed of changes in our understanding and treatment of these conditions. We also focus on trying to help patients understand their condition so that they can be more knowledgeable participants in their own assessments and care. In addition, we work closely with both local and national support organizations to provide education and support to patients through regular teaching sessions.
Research into New Alternatives for Treatment
Our Neurofibromatosis Research Program is currently focused on development of new drugs for optic pathway tumors, plexiform neurofibromas and malignant peripheral nerve sheath tumors. Another focus is the neurocognitive disabilities caused by NF-1. Clinical trials are currently open for the treatment of learning disabilities, progressive plexiform neurofibromas, and malignant peripheral nerve sheath tumors. Trials will open soon for the treatment of gliomas (including optic gliomas), tibial dysplasia, and vestibular schwannomas. The University’s program is part of a government-funded national consortium to develop treatments for NF-related disorders. We are also involved in the study of cognitive development of infants with NF-1 in coordination with the University of Wisconsin at Milwaukee. Additional treatment trials are planned.