NF-2

People with NF-2 need regular physical examinations to check their hearing and neurologic function. Hearing tests of pure tones, auditory-evoked responses, balance tests, scans of the brain and spinal cord and eye exams will probably be needed annually. Because NF-2 will ultimately affect hearing in both ears, you will need to be open to several methods of communication. Sign language opens many opportunities outside of the home for the hearing impaired. It is most useful when the entire family learns to sign. Unfortunately, lip reading is often impractical for people with NF-2. Once the NF diagnosis has been made, it is important to begin a careful, organized program to spot any change in your body that could be caused by NF. Make regular visits to your doctor part of your routine.

People with NF-2 may need complicated surgery on more than one occasion. Surgery should be performed only by a neurosurgical or ear, nose and throat team with special expertise in NF-2. Specially-trained therapists, audiologists, ophthalmologists and counselors are also essential in the rehabilitation process. In some instances, surgery should be delayed because some tumors may show very little growth over many years and can be watched carefully. However, it is clear that the best results are obtained when problems are identified and treated early.

People with NF-2 need to be cautious of non-standard treatments. Treatment should always be discussed with physicians who have experience treating NF-2. While the problems in NF-2 can be very frightening, there is evidence of significant improvements in treatment methods which are very encouraging and indicate real hope for patients to lead extremely functional lives. There is also a community of people who can provide advice and support.