Materiały źródłowe

• #1 Neurofibromatosis Type 2 – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK470350/

  Neurofibromatosis type 2 (NF2) is an autosomal dominant disorder characterized by the development of multiple tumors involving the central nervous system (CNS). […] This activity reviews the presentation, evaluation, and management of NF2 and highlights the role of the interprofessional team in the care of these patients. […] Multidisciplinary management is required in patients with NF2, including oncologists, neurologists, neuroradiologists, ophthalmologists, geneticists, nurse practitioners, and neurosurgeons. […] For tumor surveillance, an annual brain MRI is recommended. […] If the tumor is seen, then MRI should be done twice in the first year with an annual follow-up after that. […] Proper education should be given to the patient about the disease, the likely complications, and the difficulty of offering a complete cure. […] Interprofessional management is required in patients with NF2, including oncologists, neurologists, neuroradiologists, ophthalmologists, geneticists, nurse practitioners, and neurosurgeons.

• #2

  https://hifla.org/research/nf2/

  Neurofibromatosis type 2 (NF2) is a rare genetic condition that predisposes patients to tumors of the brain, spine and peripheral nerves (schwannomas, meningiomas, and ependymomas). Its incidence is one in every 33,000 to 40,000 individuals. The hallmark of NF2 is the development of tumors affecting the balance nerves in both ears (vestibular schwannomas). This condition is caused by a mutation in the NF2 gene on Chromosome 22 that produces the protein Merlin. […] Patients with NF2 usually develop symptoms in their teens or early adulthood. They frequently develop multiple simultaneous brain and spinal cord tumors. NF2 tumors may affect the nerves important for swallowing, speech, eye and facial movement, and facial sensation. […] Research and innovative clinical care are desperately needed to improve outcomes and quality of life for patients with NF2. Over the past 5 decades, physicians and researchers have been leaders in the field of NF2 research. Active efforts are underway to improve the care of patients with this condition.

• #3 Neurofibromatosis Type 2 Clinic – Overview – Mayo Clinic

  https://www.mayoclinic.org/departments-centers/neurofibromatosis-type-2-clinic/overview/ovc-20481871

  Neurofibromatosis type 2 (NF2) is an uncommon genetic condition that results in the development of multiple brain tumors and spinal tumors. Almost all people with NF2 have two tumors affecting each of the hearing nerves, called vestibular schwannomas. Other benign tumors, such as meningiomas and ependymomas, may also develop and affect the brain and spine. About half the people with NF2 have a family history of the condition. […] At the Neurofibromatosis Type 2 Clinic at Mayo Clinic’s campus in Rochester, Minnesota, you will receive comprehensive care for the diagnosis and treatment of NF2. The clinic uses several new methods of genetic testing that detect nearly 100% of all mutations in the NF2 gene. Additionally, you will have full access to physical therapy, balance therapy, hearing rehabilitation, eye care, genetic counseling, fertility medicine, psychiatric care and a number of options for tumor treatment.

• #4 Neurofibromatosis Type 2 (NF2) | American Cancer Society

  https://www.cancer.org/cancer/risk-prevention/genetics/family-cancer-syndromes/neurofibromatosis-type-2.html

  There is no cure for NF2, but regular check-ups and treatments can help manage symptoms and complications. […] MRI of the brain and spine to check for tumor growth […] Hearing and vision tests to catch changes early […] Neurological exams to check for problems with nerves. […] Hearing aids to help with hearing loss. […] Physical therapy and occupational therapy to improve balance and movement. […] Treatment depends on the type and location of the tumor: […] Doctors may monitor (watch) tumors that aren’t causing problems. […] Tumors that are causing hearing loss, pain, or pressure may need to be removed. Surgery can have risks, especially for tumors near important nerves. […] New methods like stereotactic radiosurgery can shrink or control the continued growth of tumors. […] There is currently no FDA-approved medicine to treat NF2. However, promising new drugs are being studied in clinical trials.

• #5 Genetic Disorder Reference Sheet: Neurofibromatosis Type 2 | Oncology Nursing Society

  http://www.ons.org/publications-research/voice/news-views/genetic-disorder-reference-sheet-neurofibromatosis-type-2

  Neurofibromatosis type 2 (NF2) is an autosomal dominant disorder characterized by bilateral vestibular schwannomas that can lead to significant hearing loss or deafness. […] Best managed by an interprofessional team with experience in NF2, screening begins at age 10 and includes: Annual neurologic exam by a provider familiar with NF2, beginning at the time of diagnosis; Annual brain MRI, beginning at age 10 through at least age 40; Annual hearing exam, including brain stem auditory evoked response, beginning at the time of diagnosis; Annual ophthalmology exam, beginning in early childhood. […] Retaining a patients hearing and hearing rehabilitation are primary management goals. Hearing preservation requires coordination with audiology and speech therapy to assist patients and families in coping with complications, such as by learning to use hearing aids, cochlear implants, and lip reading and sign language.

• #6 Neurofibromatosis Type 2 Treatment & Management: Approach Considerations, Radiation Treatment and Chemotherapy, Tumor Resection and Radiosurgery

  https://emedicine.medscape.com/article/1178283-treatment

  For individuals diagnosed with neurofibromatosis type 2 (NF2), medical care consists of routine examinations focusing on some of the potential complications related to CNS or spinal cord lesions. […] Annual neurologic assessment by a trained specialist is most useful in this clinical setting; the neurologist may detect subtle sensory or motor deficits even before the patient is aware of any difficulties. […] For patients with multiple medical problems associated with NF2, management by a team of specialists through a multidisciplinary clinic may provide the most comprehensive and cost-effective care over time. […] Although care of the patient with neurofibromatosis type 2 can be coordinated in the primary care setting, the complexity, rarity, and multisystem involvement encountered in this condition suggest that medical care in a disease-specific, multidisciplinary clinic may permit optimal management.

• #7 Understanding neurofibromatosis type 2 | Nursing Times

  https://www.nursingtimes.net/research-and-innovation/understanding-neurofibromatosis-type-2-29-11-2013/

  Neurofibromatosis type 2 is a rare genetic condition affecting hearing, sight and balance. […] Patients should be managed in specialty centres. Many specialties are involved in patient care including: neurosurgery; ear, nose and throat; audiology; neurology; ophthalmology; and genetics. […] All individuals who are affected should be offered a genetic test. This has implications for other family members, who may be at risk of inheriting the condition. […] Patients benefit from rehabilitation courses to help reduce feelings of isolation and negotiate the practical and emotional challenges associated with hearing loss. […] Good communication is essential. Take time to find out if they are hearing impaired; for example, is one ear affected or are they completely deaf? Check whether there are any visual impairments. Ensure all members of staff are aware of any issues regarding deafness, visual impairment and poor balance.

• #8 Neurofibromatosis Type 2 Clinic – Overview – Mayo Clinic

  https://www.mayoclinic.org/departments-centers/neurofibromatosis-type-2-clinic/overview/ovc-20481871

  The type of surgery depends on the size, type, location and depth of the tumor. The surgeons in the Neurofibromatosis Type 2 Clinic are skilled at using minimally invasive surgery techniques to enhance your surgical outcome and reduce the risk of complications. […] Rehabilitation specialists in speech therapy, swallowing therapy, balance therapy, dietetics, physical therapy and occupational therapy help with relevant rehabilitation. […] At the Neurofibromatosis Type 2 Clinic, experts work together as a multispecialty team to provide exactly the care you need. Because all the providers on your team discuss your specific condition together, you receive a unified message that is tailored to your specific needs and priorities. […] The Neurofibromatosis Type 2 Clinic team includes audiologists, brain surgeons (neurosurgeons), ear surgeons (neurotologists), clinic coordinator, medical geneticists, medical oncologists, neurologists, pathologists, psychiatrist, radiation oncologists, radiologists, rehabilitation medicine specialists, research coordinator, and other medical providers.

• #9 NF2-Related Schwannomatosis (Neurofibromatosis Type 2)

  https://my.clevelandclinic.org/health/diseases/16196-neurofibromatosis-type-2-nf2

  It’s very important that your NF2 care is treated by a multidisciplinary team with experience caring for individuals with NF2. The treatment team includes: Neuro-oncologists. Neurosurgeons. ENT surgeons. Audiologists. Genetic counselors. […] Side effects vary based on the type of treatment. The benefits of treatment must outweigh the risks for each option. […] Talk to your provider about what side effects to look out for before you begin treatment. […] Your care team will find treatment options to help you manage your symptoms. They’ll weigh each type of treatment to make sure it’s safe and that it offers the best outcome for you.

• #10 Neurofibromatosis Type 2 – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK470350/

  Neurofibromatosis type 2 (NF2) is an autosomal dominant disorder characterized by the development of multiple tumors involving the central nervous system (CNS). […] This activity reviews the presentation, evaluation, and management of NF2 and highlights the role of the interprofessional team in the care of these patients. […] Multidisciplinary management is required in patients with NF2, including oncologists, neurologists, neuroradiologists, ophthalmologists, geneticists, nurse practitioners, and neurosurgeons. […] For tumor surveillance, an annual brain MRI is recommended. […] If the tumor is seen, then MRI should be done twice in the first year with an annual follow-up after that. […] Proper education should be given to the patient about the disease, the likely complications, and the difficulty of offering a complete cure. […] Interprofessional management is required in patients with NF2, including oncologists, neurologists, neuroradiologists, ophthalmologists, geneticists, nurse practitioners, and neurosurgeons.

• #11 Multidisciplinary Neurofibromatosis and Schwannomatosis Clinic – Neurosurgery | UCLA Health

  https://www.uclahealth.org/medical-services/neurosurgery/conditions-treated/multidisciplinary-neurofibromatosis-and-schwannomatosis

  The UCLA NF/SWN Clinic offers a comprehensive multidisciplinary approach for neurofibromatosis type 1, NF2-related Schwannomatosis (NF2) and other schwannomatosis patients. […] The core team includes pediatric and adults neuro-oncologists, medical oncologists, neurosurgeons, neuro-otologists, and clinical geneticists. […] The UCLA NF/SWN Clinic is one of the few in the country that sees both adults and children. […] Care providers at the UCLA NF/SWN Clinic are part of one of the largest brain, spine, and peripheral nerve tumor centers in the world. […] At the UCLA NF Clinic, a team of doctors and other health care professionals works together to provide the most effective and safest treatment possible for patients with neurofibromatosis. […] Other doctors and health care professionals with special expertise in neurofibromatosis may also be part of the care team.

• #12 Neurofibromatosis Type 2 | St. Jude Care & Treatment

  https://www.stjude.org/care-treatment/treatment/genetic-syndromes/neurofibromatosis-type-2.html

  Although most of the tumors related to NF2 are not cancerous, people with the condition should be monitored for the development of tumors in case they do become cancerous. Some non-cancerous tumors can cause problems, such as loss of hearing or nerve damage. It is also important for doctors to carefully monitor tumors for signs that have become cancerous. Early screening and detection allow the best outcome for patients. […] The following screenings are recommended for children with NF2: Yearly physical exams by a doctor who knows the condition well, Yearly MRI scan of the brain starting at 10 years of age, MRI scan of the spine starting at 10 years of age and repeated every 2-3 years, Yearly vision screening by an ophthalmologist (eye specialist) starting at the time of diagnosis, Yearly hearing evaluation by an audiologist starting at the time of diagnosis.

• #13 Neurofibromatosis Type 2 Treatment & Management: Approach Considerations, Radiation Treatment and Chemotherapy, Tumor Resection and Radiosurgery

  https://emedicine.medscape.com/article/1178283-treatment

  The neurologist and neurosurgeon work closely together in the management of central and spinal cord lesions in neurofibromatosis type 2 (NF2). […] The audiologist serves as an essential member of the management team for individuals with acoustic nerve lesions. […] The ophthalmologist is an important team member and can assist in the diagnosis and care of the patient with NF2. […] The following is an outline of reasonable guidelines in the care of the patient with neurofibromatosis type 2 (NF2): Annual neurologic examination looking for subtle deficits or changes in neurologic status that might suggest disease progression, Annual hearing screening with BAER, with referral to an audiologist for amplification, augmentation, or speech therapy recommendations, Annual MRI to monitor existing lesions or look for presymptomatic lesions, Annual ophthalmologic evaluations to monitor visual acuity.

• #14 Neurofibromatosis Type 2 | St. Jude Care & Treatment

  https://www.stjude.org/care-treatment/treatment/genetic-syndromes/neurofibromatosis-type-2.html

  Although most of the tumors related to NF2 are not cancerous, people with the condition should be monitored for the development of tumors in case they do become cancerous. Some non-cancerous tumors can cause problems, such as loss of hearing or nerve damage. It is also important for doctors to carefully monitor tumors for signs that have become cancerous. Early screening and detection allow the best outcome for patients. […] The following screenings are recommended for children with NF2: Yearly physical exams by a doctor who knows the condition well, Yearly MRI scan of the brain starting at 10 years of age, MRI scan of the spine starting at 10 years of age and repeated every 2-3 years, Yearly vision screening by an ophthalmologist (eye specialist) starting at the time of diagnosis, Yearly hearing evaluation by an audiologist starting at the time of diagnosis.

• #15 Genetic Disorder Reference Sheet: Neurofibromatosis Type 2 | Oncology Nursing Society

  http://www.ons.org/publications-research/voice/news-views/genetic-disorder-reference-sheet-neurofibromatosis-type-2

  Neurofibromatosis type 2 (NF2) is an autosomal dominant disorder characterized by bilateral vestibular schwannomas that can lead to significant hearing loss or deafness. […] Best managed by an interprofessional team with experience in NF2, screening begins at age 10 and includes: Annual neurologic exam by a provider familiar with NF2, beginning at the time of diagnosis; Annual brain MRI, beginning at age 10 through at least age 40; Annual hearing exam, including brain stem auditory evoked response, beginning at the time of diagnosis; Annual ophthalmology exam, beginning in early childhood. […] Retaining a patients hearing and hearing rehabilitation are primary management goals. Hearing preservation requires coordination with audiology and speech therapy to assist patients and families in coping with complications, such as by learning to use hearing aids, cochlear implants, and lip reading and sign language.

• #16 Neurofibromatosis Type 2 Treatment & Management: Approach Considerations, Radiation Treatment and Chemotherapy, Tumor Resection and Radiosurgery

  https://emedicine.medscape.com/article/1178283-treatment

  The neurologist and neurosurgeon work closely together in the management of central and spinal cord lesions in neurofibromatosis type 2 (NF2). […] The audiologist serves as an essential member of the management team for individuals with acoustic nerve lesions. […] The ophthalmologist is an important team member and can assist in the diagnosis and care of the patient with NF2. […] The following is an outline of reasonable guidelines in the care of the patient with neurofibromatosis type 2 (NF2): Annual neurologic examination looking for subtle deficits or changes in neurologic status that might suggest disease progression, Annual hearing screening with BAER, with referral to an audiologist for amplification, augmentation, or speech therapy recommendations, Annual MRI to monitor existing lesions or look for presymptomatic lesions, Annual ophthalmologic evaluations to monitor visual acuity.

• #17 Neurofibromatosis Type 2: Practice Essentials, Background, Etiology

  https://emedicine.medscape.com/article/1178283-overview

  Medical care for patients with NF2 consists of routine examinations focusing on early detection of some of the potential complications related to CNS or spinal cord lesions. Management by a team of specialists through a multidisciplinary clinic may provide the most comprehensive and cost-effective care over time. The following is an outline of reasonable guidelines in the care of the patient with NF2: […] Annual neurologic examination looking for subtle deficits or changes in neurologic status that might suggest disease progression […] Annual hearing screening with BAER, with referral to an audiologist for amplification, augmentation, or speech therapy recommendations […] Annual MRI to monitor existing lesions or look for presymptomatic lesions […] Annual ophthalmologic evaluations to monitor visual acuity.

• #18 Neurofibromatosis – AANS

  https://www.aans.org/patients/conditions-treatments/neurofibromatosis/

  Patients with NF2 should have similar routine examinations and care. Known growths are often imaged with periodic surveillance scans with treatment reserved for enlarging or symptomatic growths. […] There is no known treatment or cure for neurofibromatosis or schwannomatosis. Medication can be prescribed to help with pain. In some cases, growths may be removed surgically or reduced with radiation therapy. Although surgery in these areas can cause further injury to nerves and additional neurological problems, it is usually well tolerated. The benefits of surgery should always be weighed against its risks. Likewise, in situations where radiation treatment is an option, the risks and benefits must be carefully considered.

• #19 Neurofibromatosis Type 2 | St. Jude Care & Treatment

  https://www.stjude.org/care-treatment/treatment/genetic-syndromes/neurofibromatosis-type-2.html

  Although most of the tumors related to NF2 are not cancerous, people with the condition should be monitored for the development of tumors in case they do become cancerous. Some non-cancerous tumors can cause problems, such as loss of hearing or nerve damage. It is also important for doctors to carefully monitor tumors for signs that have become cancerous. Early screening and detection allow the best outcome for patients. […] The following screenings are recommended for children with NF2: Yearly physical exams by a doctor who knows the condition well, Yearly MRI scan of the brain starting at 10 years of age, MRI scan of the spine starting at 10 years of age and repeated every 2-3 years, Yearly vision screening by an ophthalmologist (eye specialist) starting at the time of diagnosis, Yearly hearing evaluation by an audiologist starting at the time of diagnosis.

• #20 Neurofibromatosis 2 (NF2): Symptoms, Treatment, and More

  https://www.healthline.com/health/neurofibromatosis

  Theres no cure for either type of NF. However, your symptoms can be managed with treatment. Regular checkups and monitoring are important for people with NF2. This way, any potential complications can be caught and treated early. Physical exams, neurological tests, and a hearing test should be conducted at least once a year. Annual visits with an ophthalmologist (eye doctor) are also recommended. […] Surgery may be recommended if your tumors become too large or begin to cause sensory impairment. The tumors associated with NF2 form in problematic locations. The surgical procedure usually requires a team of neurosurgeons, ophthalmologists, and ear, nose, and throat (ENT) specialists. These specialists ensure that the tumor is removed safely without causing damage to the surrounding areas. […] Stereotactic radiosurgery may be an option to treat some tumors. This technique uses targeted rays of radiation to attack and shrink the tumors. […] Depending on the type and location of your tumors, chemotherapy may also be recommended. This is an aggressive form of drug treatment that helps reduce the size of tumors.

• #21 Neurofibromatosis type 2 (NF2)

  https://www.nhs.uk/conditions/neurofibromatosis-type-2/treatment/

  Theres currently no cure for neurofibromatosis type 2 (NF2), but there are treatments that can help manage your symptoms. […] Most people with NF2 will need surgery at some point during their life to remove tumours from their inner ear, brain or spinal cord. […] You’ll need ongoing care and support from a range of specialists, such as physiotherapists and hearing specialists. Youll also have regular appointments and scans to check for any changes in your symptoms. […] If you or your child have neurofibromatosis type 2 (NF2), healthcare professionals will be there to support you throughout your treatment.

• #22 Neurofibromatosis Type 2 Diagnosis & Treatment – NYC | Columbia Neurosurgery in New York City

  https://www.neurosurgery.columbia.edu/patient-care/conditions/neurofibromatosis-type-2

  Neurofibromatosis type 2 (NF2) is a rare genetic condition characterized by tumors in the peripheral and central nervous system. Several options are available to treat these tumors, including observation, surgical removal, peripheral nerve surgery, stereotactic radiosurgery, chemotherapy, and radiation therapy. […] Treatment depends on the size and type of tumor and also whether the tumor is causing symptoms. If the tumor is asymptomatic, close observation using imaging studies may be recommended in lieu of surgical intervention. […] For most brain tumors arising with NF2, the standard treatment is brain tumor surgery to resect the tumor. During surgery, a neurosurgeon temporarily removes a portion of the skull to gain access to the tumor, a procedure called a craniotomy. […] In surgery to resect acoustic neuromas, removal of tumorous tissue and protecting the patients hearing are simultaneous priorities. Small acoustic neuromas may be treated by surgical resection along with stereotactic radiosurgerya noninvasive technique in which a highly focused beam of radiation is used to destroy the tumor. […] The benign peripheral nerve tumors associated with NF2 can be treated by surgical removal. Our experienced neurosurgeons meticulously dissect the tumor away from the fragile nerve, leaving the nerve intact and protecting its function.

• #23 Management of neurofibromatosis type 2 and schwannomatosis associated peripheral and intraspinal schwannomas: influence of surgery, genetics, and localization

  https://pmc.ncbi.nlm.nih.gov/articles/PMC9424169/

  Peripheral and intraspinal schwannomas are common and clinically complex pathologies in patients with Neurofibromatosis Type 2 (NF2) and Schwannomatosis (SWNT). Functional preservation and pain relief are the major goals in treating these tumors. […] Persisting drug-resistant pain was the most common symptom (84%, n=173) and indication for surgery (54%, n=110). Improvement in pain intensity was postoperatively seen in 81%. […] Resection of peripheral and intraspinal schwannomas is an effective and low-risk treatment in both NF2 and SWNT. Patients with severe pain have a particular benefit from surgical treatment. Intraspinal lesions are associated with worse neurological function whereas peripheral lesions showed a higher pain intensity. […] The management of peripheral nerve schwannomas associated with NF2 and SWNT is complex due to multiplicity and comorbidities, prompting for interdisciplinary care. Indication for surgery is dictated by neurological deficits, drug-resistant pain, or significant tumor progression. Utilizing principles of microsurgery and interfascicular preparation, resection as associated with a very low complication rate and excellent results concerning pain reduction. Preoperative neurological impairment and total resection rate was higher in SWNT-associated PNS.

• #24 Management of neurofibromatosis type 2 and schwannomatosis associated peripheral and intraspinal schwannomas: influence of surgery, genetics, and localization

  https://pmc.ncbi.nlm.nih.gov/articles/PMC9424169/

  Peripheral and intraspinal schwannomas are common and clinically complex pathologies in patients with Neurofibromatosis Type 2 (NF2) and Schwannomatosis (SWNT). Functional preservation and pain relief are the major goals in treating these tumors. […] Persisting drug-resistant pain was the most common symptom (84%, n=173) and indication for surgery (54%, n=110). Improvement in pain intensity was postoperatively seen in 81%. […] Resection of peripheral and intraspinal schwannomas is an effective and low-risk treatment in both NF2 and SWNT. Patients with severe pain have a particular benefit from surgical treatment. Intraspinal lesions are associated with worse neurological function whereas peripheral lesions showed a higher pain intensity. […] The management of peripheral nerve schwannomas associated with NF2 and SWNT is complex due to multiplicity and comorbidities, prompting for interdisciplinary care. Indication for surgery is dictated by neurological deficits, drug-resistant pain, or significant tumor progression. Utilizing principles of microsurgery and interfascicular preparation, resection as associated with a very low complication rate and excellent results concerning pain reduction. Preoperative neurological impairment and total resection rate was higher in SWNT-associated PNS.

• #25 Neurofibromatosis Type 2 Diagnosis & Treatment – NYC | Columbia Neurosurgery in New York City

  https://www.neurosurgery.columbia.edu/patient-care/conditions/neurofibromatosis-type-2

  Neurofibromatosis type 2 (NF2) is a rare genetic condition characterized by tumors in the peripheral and central nervous system. Several options are available to treat these tumors, including observation, surgical removal, peripheral nerve surgery, stereotactic radiosurgery, chemotherapy, and radiation therapy. […] Treatment depends on the size and type of tumor and also whether the tumor is causing symptoms. If the tumor is asymptomatic, close observation using imaging studies may be recommended in lieu of surgical intervention. […] For most brain tumors arising with NF2, the standard treatment is brain tumor surgery to resect the tumor. During surgery, a neurosurgeon temporarily removes a portion of the skull to gain access to the tumor, a procedure called a craniotomy. […] In surgery to resect acoustic neuromas, removal of tumorous tissue and protecting the patients hearing are simultaneous priorities. Small acoustic neuromas may be treated by surgical resection along with stereotactic radiosurgerya noninvasive technique in which a highly focused beam of radiation is used to destroy the tumor. […] The benign peripheral nerve tumors associated with NF2 can be treated by surgical removal. Our experienced neurosurgeons meticulously dissect the tumor away from the fragile nerve, leaving the nerve intact and protecting its function.

• #26 Neurofibromatosis Type 2 | Center for Neurosciences

  https://neurotucson.com/ear-hearing/neurotology/neurofibromatosis-type-2/

  If hearing cannot be preserved during the operation, Dr. Jacob makes every effort to save the cochlear nerve on the operated side as it provides patients with the option of cochlear implantation in the future. […] In close partnership with neurosurgery, he offers the full complement of surgical approaches, including the translabyrinthine approach, retrosigmoid approach, middle fossa approach and petrosal approach to his patients. […] The use of stereotactic radiation therapy in patients with NF2 is controversial. […] The goal of radiosurgery is to stop the growth of the tumor, but the tumor is not removed. […] Stereotactic radiation is most commonly performed in patients who are not good surgical candidates; however, any patient can elect this option.

• #27 Neurofibromatosis Type 2 Clinic – Overview – Mayo Clinic

  https://www.mayoclinic.org/departments-centers/neurofibromatosis-type-2-clinic/overview/ovc-20481871

  The type of surgery depends on the size, type, location and depth of the tumor. The surgeons in the Neurofibromatosis Type 2 Clinic are skilled at using minimally invasive surgery techniques to enhance your surgical outcome and reduce the risk of complications. […] Rehabilitation specialists in speech therapy, swallowing therapy, balance therapy, dietetics, physical therapy and occupational therapy help with relevant rehabilitation. […] At the Neurofibromatosis Type 2 Clinic, experts work together as a multispecialty team to provide exactly the care you need. Because all the providers on your team discuss your specific condition together, you receive a unified message that is tailored to your specific needs and priorities. […] The Neurofibromatosis Type 2 Clinic team includes audiologists, brain surgeons (neurosurgeons), ear surgeons (neurotologists), clinic coordinator, medical geneticists, medical oncologists, neurologists, pathologists, psychiatrist, radiation oncologists, radiologists, rehabilitation medicine specialists, research coordinator, and other medical providers.

• #28 Neurofibromatosis Type 2 | Center for Neurosciences

  https://neurotucson.com/ear-hearing/neurotology/neurofibromatosis-type-2/

  If hearing cannot be preserved during the operation, Dr. Jacob makes every effort to save the cochlear nerve on the operated side as it provides patients with the option of cochlear implantation in the future. […] In close partnership with neurosurgery, he offers the full complement of surgical approaches, including the translabyrinthine approach, retrosigmoid approach, middle fossa approach and petrosal approach to his patients. […] The use of stereotactic radiation therapy in patients with NF2 is controversial. […] The goal of radiosurgery is to stop the growth of the tumor, but the tumor is not removed. […] Stereotactic radiation is most commonly performed in patients who are not good surgical candidates; however, any patient can elect this option.

• #29 Neurofibromatosis Type 2: Case Presentation and Review of the Literature | IntechOpen

  https://www.intechopen.com/chapters/1136889

  The literature shows strong evidence that these patients are best managed by a multidisciplinary team involving genetics, neurosurgery, otolaryngology, ophthalmology, neurology, radiology, pathology, and audiology. […] We recommend routine surveillance in all patients with NF2 whether or not they are symptomatic from their tumors. […] Surgery is often the treatment of choice when an NF2 patient has a tumor that is actively growing. […] Vestibular schwannomas should be surgically addressed when they are growing because they can cause brainstem compression, hearing loss, and facial paralysis. […] A Chiari malformation is defined as the caudal displacement of the cerebellar tonsils below the level of the foramen magnum. […] Stereotactic radiosurgery (SRS), or radiosurgery, is a treatment of tumors and other lesions using well-collimated, multiple small beams of ionizing radiation to treat a target, while reducing toxic exposure to surrounding tissues. […] There are established chemotherapy treatments for NF2.

• #30 Neurofibromatosis Type 2 Diagnosis & Treatment – NYC | Columbia Neurosurgery in New York City

  https://www.neurosurgery.columbia.edu/patient-care/conditions/neurofibromatosis-type-2

  Neurofibromatosis type 2 (NF2) is a rare genetic condition characterized by tumors in the peripheral and central nervous system. Several options are available to treat these tumors, including observation, surgical removal, peripheral nerve surgery, stereotactic radiosurgery, chemotherapy, and radiation therapy. […] Treatment depends on the size and type of tumor and also whether the tumor is causing symptoms. If the tumor is asymptomatic, close observation using imaging studies may be recommended in lieu of surgical intervention. […] For most brain tumors arising with NF2, the standard treatment is brain tumor surgery to resect the tumor. During surgery, a neurosurgeon temporarily removes a portion of the skull to gain access to the tumor, a procedure called a craniotomy. […] In surgery to resect acoustic neuromas, removal of tumorous tissue and protecting the patients hearing are simultaneous priorities. Small acoustic neuromas may be treated by surgical resection along with stereotactic radiosurgerya noninvasive technique in which a highly focused beam of radiation is used to destroy the tumor. […] The benign peripheral nerve tumors associated with NF2 can be treated by surgical removal. Our experienced neurosurgeons meticulously dissect the tumor away from the fragile nerve, leaving the nerve intact and protecting its function.

• #31 Neurofibromatosis Type 2 | Center for Neurosciences

  https://neurotucson.com/ear-hearing/neurotology/neurofibromatosis-type-2/

  If hearing cannot be preserved during the operation, Dr. Jacob makes every effort to save the cochlear nerve on the operated side as it provides patients with the option of cochlear implantation in the future. […] In close partnership with neurosurgery, he offers the full complement of surgical approaches, including the translabyrinthine approach, retrosigmoid approach, middle fossa approach and petrosal approach to his patients. […] The use of stereotactic radiation therapy in patients with NF2 is controversial. […] The goal of radiosurgery is to stop the growth of the tumor, but the tumor is not removed. […] Stereotactic radiation is most commonly performed in patients who are not good surgical candidates; however, any patient can elect this option.

• #32 Neurofibromatosis Type 2: Case Presentation and Review of the Literature | IntechOpen

  https://www.intechopen.com/chapters/1136889

  The literature shows strong evidence that these patients are best managed by a multidisciplinary team involving genetics, neurosurgery, otolaryngology, ophthalmology, neurology, radiology, pathology, and audiology. […] We recommend routine surveillance in all patients with NF2 whether or not they are symptomatic from their tumors. […] Surgery is often the treatment of choice when an NF2 patient has a tumor that is actively growing. […] Vestibular schwannomas should be surgically addressed when they are growing because they can cause brainstem compression, hearing loss, and facial paralysis. […] A Chiari malformation is defined as the caudal displacement of the cerebellar tonsils below the level of the foramen magnum. […] Stereotactic radiosurgery (SRS), or radiosurgery, is a treatment of tumors and other lesions using well-collimated, multiple small beams of ionizing radiation to treat a target, while reducing toxic exposure to surrounding tissues. […] There are established chemotherapy treatments for NF2.

• #33 Neurofibromatosis Type 2 | Center for Neurosciences

  https://neurotucson.com/ear-hearing/neurotology/neurofibromatosis-type-2/

  If hearing cannot be preserved during the operation, Dr. Jacob makes every effort to save the cochlear nerve on the operated side as it provides patients with the option of cochlear implantation in the future. […] In close partnership with neurosurgery, he offers the full complement of surgical approaches, including the translabyrinthine approach, retrosigmoid approach, middle fossa approach and petrosal approach to his patients. […] The use of stereotactic radiation therapy in patients with NF2 is controversial. […] The goal of radiosurgery is to stop the growth of the tumor, but the tumor is not removed. […] Stereotactic radiation is most commonly performed in patients who are not good surgical candidates; however, any patient can elect this option.

• #34 Neurofibromatosis Type 2 | Center for Neurosciences

  https://neurotucson.com/ear-hearing/neurotology/neurofibromatosis-type-2/

  If hearing cannot be preserved during the operation, Dr. Jacob makes every effort to save the cochlear nerve on the operated side as it provides patients with the option of cochlear implantation in the future. […] In close partnership with neurosurgery, he offers the full complement of surgical approaches, including the translabyrinthine approach, retrosigmoid approach, middle fossa approach and petrosal approach to his patients. […] The use of stereotactic radiation therapy in patients with NF2 is controversial. […] The goal of radiosurgery is to stop the growth of the tumor, but the tumor is not removed. […] Stereotactic radiation is most commonly performed in patients who are not good surgical candidates; however, any patient can elect this option.

• #35 Neurofibromatosis – AANS

  https://www.aans.org/patients/conditions-treatments/neurofibromatosis/

  Patients with NF2 should have similar routine examinations and care. Known growths are often imaged with periodic surveillance scans with treatment reserved for enlarging or symptomatic growths. […] There is no known treatment or cure for neurofibromatosis or schwannomatosis. Medication can be prescribed to help with pain. In some cases, growths may be removed surgically or reduced with radiation therapy. Although surgery in these areas can cause further injury to nerves and additional neurological problems, it is usually well tolerated. The benefits of surgery should always be weighed against its risks. Likewise, in situations where radiation treatment is an option, the risks and benefits must be carefully considered.

• #36 Neurofibromatosis Type 2 (NF2) | American Cancer Society

  https://www.cancer.org/cancer/risk-prevention/genetics/family-cancer-syndromes/neurofibromatosis-type-2.html

  There is no cure for NF2, but regular check-ups and treatments can help manage symptoms and complications. […] MRI of the brain and spine to check for tumor growth […] Hearing and vision tests to catch changes early […] Neurological exams to check for problems with nerves. […] Hearing aids to help with hearing loss. […] Physical therapy and occupational therapy to improve balance and movement. […] Treatment depends on the type and location of the tumor: […] Doctors may monitor (watch) tumors that aren’t causing problems. […] Tumors that are causing hearing loss, pain, or pressure may need to be removed. Surgery can have risks, especially for tumors near important nerves. […] New methods like stereotactic radiosurgery can shrink or control the continued growth of tumors. […] There is currently no FDA-approved medicine to treat NF2. However, promising new drugs are being studied in clinical trials.

• #37 NF2-Related Schwannomatosis (Neurofibromatosis Type 2)

  https://my.clevelandclinic.org/health/diseases/16196-neurofibromatosis-type-2-nf2

  NF2-related schwannomatosis (neurofibromatosis type 2) is a genetic condition that affects your skin and nervous system. […] Treatment could include: Surgery to remove tumors or treat cataracts. Chemotherapy or radiation therapy like stereotactic radiotherapy to reduce the size of tumors. Hearing aids, cochlear implants, an auditory brainstem implant for hearing preservation. Assistive devices for vision loss like glasses. Mobility devices for symptoms that affect your nerves and movement. Medications to manage symptoms like pain. […] Your provider will offer treatment that’s ideal for you, as treatment can vary from person to person. In some cases, your healthcare provider may monitor how tumors affect you without treating them if they don’t cause symptoms that interfere with your daily routine. You’ll likely need at least one physical exam, imaging test, hearing test and vision test per year to keep track of how symptoms affect you.

• #38 Neurofibromatosis Type 2: Causes, Diagnosis, Treatment

  https://www.verywellhealth.com/neurofibromatosis-type-2-nf2-2860838

  Other symptoms such as pain, headaches, or seizures can be managed with medications like nonsteroidal anti-inflammatory drugs (NSAIDs) or anticonvulsants. […] The diagnosis of NF2 is based largely on a physical exam and MRI. Treatment may involve active surveillance if tumors are small and asymptomatic; larger tumors may require surgery or radiation.

• #39 Neurofibromatosis Type 2: Case Presentation and Review of the Literature | IntechOpen

  https://www.intechopen.com/chapters/1136889

  The literature shows strong evidence that these patients are best managed by a multidisciplinary team involving genetics, neurosurgery, otolaryngology, ophthalmology, neurology, radiology, pathology, and audiology. […] We recommend routine surveillance in all patients with NF2 whether or not they are symptomatic from their tumors. […] Surgery is often the treatment of choice when an NF2 patient has a tumor that is actively growing. […] Vestibular schwannomas should be surgically addressed when they are growing because they can cause brainstem compression, hearing loss, and facial paralysis. […] A Chiari malformation is defined as the caudal displacement of the cerebellar tonsils below the level of the foramen magnum. […] Stereotactic radiosurgery (SRS), or radiosurgery, is a treatment of tumors and other lesions using well-collimated, multiple small beams of ionizing radiation to treat a target, while reducing toxic exposure to surrounding tissues. […] There are established chemotherapy treatments for NF2.

• #40 Bringing Brigatinib to Neurofibromatosis Type-2 Patients: From Promising Potential to Platform Clinical Trial – Children’s Tumor Foundation

  https://www.ctf.org/news/clinical-trial-intuitt-for-nf2-press-release/

  The Childrens Tumor Foundation (CTF) announced today a significant advancement in care for neurofibromatosis type 2 patients with the launch of a new clinical trial called INTUITT-NF2, an innovative platform trial which will evaluate multiple treatments simultaneously. […] The INTUITT-NF2 trial will enroll patients with progressive tumors of any type schwannoma, meningioma, or ependymoma to allow for the simultaneous study of the various tumor types, rather than one tumor type alone. This approach will accelerate the information gathering and results analysis processes. […] The goal of this new trial is to rapidly and efficiently screen multiple therapies simultaneously so as to enable faster approval studies that have the highest indication for success. […] The INTUITT-NF2 trial will expand the possibilities for NF2 care in multiple ways.

• #41

  https://www.mangen.co.uk/healthcare-professionals/clinical-genomic-services/nf2/

  Neurofibromatosis Type 2 (NF2) is a variable genetic condition which causes benign tumours in the nerves coming from the brain and spinal cord and on the surrounding tissues called meninges. The hallmark feature of NF2 is the presence of bilateral tumours on the hearing and balance nerves called Vestibular Schwannomas. […] The joint speciality clinic for NF2 has been established to offer health care for patients and their families who have a diagnosis of NF2. As there may be a number of doctors involved in caring for people with NF2, a multidisciplinary approach is the best for explaining the diagnosis, assessing symptoms and deciding what treatment, if any, should be offered. These decisions are complicated and need careful consideration by the specialist team. […] NF2 clinics are held at the Genetics Department, 6th floor, St Marys Hospital. We also have two to four satellite clinics a year in each of Leeds, Sheffield, Liverpool and Newcastle. […] The paediatric NF2 service has four main clinics and eight sub clinics per year and has a dedicated paediatric team. […] There is a dedicated monthly clinic for patients receiving Bevacizumab (Avastin) treatment. […] NF2 Nurses Advice Helpline 0161 276 4619.

• #42 Bringing Brigatinib to Neurofibromatosis Type-2 Patients: From Promising Potential to Platform Clinical Trial – Children’s Tumor Foundation

  https://www.ctf.org/news/clinical-trial-intuitt-for-nf2-press-release/

  The Childrens Tumor Foundation (CTF) announced today a significant advancement in care for neurofibromatosis type 2 patients with the launch of a new clinical trial called INTUITT-NF2, an innovative platform trial which will evaluate multiple treatments simultaneously. […] The INTUITT-NF2 trial will enroll patients with progressive tumors of any type schwannoma, meningioma, or ependymoma to allow for the simultaneous study of the various tumor types, rather than one tumor type alone. This approach will accelerate the information gathering and results analysis processes. […] The goal of this new trial is to rapidly and efficiently screen multiple therapies simultaneously so as to enable faster approval studies that have the highest indication for success. […] The INTUITT-NF2 trial will expand the possibilities for NF2 care in multiple ways.

• #43 Bringing Brigatinib to Neurofibromatosis Type-2 Patients: From Promising Potential to Platform Clinical Trial – Children’s Tumor Foundation

  https://www.ctf.org/news/clinical-trial-intuitt-for-nf2-press-release/

  The Childrens Tumor Foundation (CTF) announced today a significant advancement in care for neurofibromatosis type 2 patients with the launch of a new clinical trial called INTUITT-NF2, an innovative platform trial which will evaluate multiple treatments simultaneously. […] The INTUITT-NF2 trial will enroll patients with progressive tumors of any type schwannoma, meningioma, or ependymoma to allow for the simultaneous study of the various tumor types, rather than one tumor type alone. This approach will accelerate the information gathering and results analysis processes. […] The goal of this new trial is to rapidly and efficiently screen multiple therapies simultaneously so as to enable faster approval studies that have the highest indication for success. […] The INTUITT-NF2 trial will expand the possibilities for NF2 care in multiple ways.

• #44 Bringing Brigatinib to Neurofibromatosis Type-2 Patients: From Promising Potential to Platform Clinical Trial – Children’s Tumor Foundation

  https://www.ctf.org/news/clinical-trial-intuitt-for-nf2-press-release/

  By contrast, the INTUITT-NF2 trial will enroll patients with schwannomas, meningiomas, and ependymomas. […] This novel approach provides the opportunity to find active drugs for tumor types that have never been eligible for clinical trials previously. […] The trial design allows for the addition of drugs to be tested rather quickly, again increasing what we know about their real-life impact on NF2 patients.

• #45 Neurofibromatosis – UChicago Medicine

  https://www.uchicagomedicine.org/conditions-services/neurology-neurosurgery/neurofibromatosis

  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 they can be more knowledgeable participants in their own assessments and care.

• #46 Genetic Disorder Reference Sheet: Neurofibromatosis Type 2 | Oncology Nursing Society

  http://www.ons.org/publications-research/voice/news-views/genetic-disorder-reference-sheet-neurofibromatosis-type-2

  Neurofibromatosis type 2 (NF2) is an autosomal dominant disorder characterized by bilateral vestibular schwannomas that can lead to significant hearing loss or deafness. […] Best managed by an interprofessional team with experience in NF2, screening begins at age 10 and includes: Annual neurologic exam by a provider familiar with NF2, beginning at the time of diagnosis; Annual brain MRI, beginning at age 10 through at least age 40; Annual hearing exam, including brain stem auditory evoked response, beginning at the time of diagnosis; Annual ophthalmology exam, beginning in early childhood. […] Retaining a patients hearing and hearing rehabilitation are primary management goals. Hearing preservation requires coordination with audiology and speech therapy to assist patients and families in coping with complications, such as by learning to use hearing aids, cochlear implants, and lip reading and sign language.

• #47 Neurofibromatosis Type 2 | Condition | UT Southwestern Medical Center

  https://utswmed.org/conditions-treatments/neurofibromatosis-type-2/

  UT Southwestern Medical Centers Neurofibromatosis Type 2 (NF2) program brings together multiple specialists to provide comprehensive care for those living with this rare and complicated genetic disorder. […] While there is no cure for NF2, our multidisciplinary team can help improve a patients quality of life by lessening the debilitating consequences of the disease. […] We have specialists in the following areas who come together to manage the care of our NF2 patients: Neurotology, Skull base neurosurgery, Spine surgery, Facial plastic surgery, Oculoplastic surgery, Neuro-ophthalmology, Laryngology, Audiology, Oncology, Speech therapy, Physical therapy. […] Most of the treatments for NF2 are aimed at symptom management. […] Our NF2 clinic is the only one in the southern United States to offer auditory brainstem implants (ABI). […] In addition, we offer all aspects of hearing rehabilitation including hearing aids, bone-anchored hearing aids, and cochlear implants.

• #48 Genetic Disorder Reference Sheet: Neurofibromatosis Type 2 | Oncology Nursing Society

  http://www.ons.org/publications-research/voice/news-views/genetic-disorder-reference-sheet-neurofibromatosis-type-2

  Neurofibromatosis type 2 (NF2) is an autosomal dominant disorder characterized by bilateral vestibular schwannomas that can lead to significant hearing loss or deafness. […] Best managed by an interprofessional team with experience in NF2, screening begins at age 10 and includes: Annual neurologic exam by a provider familiar with NF2, beginning at the time of diagnosis; Annual brain MRI, beginning at age 10 through at least age 40; Annual hearing exam, including brain stem auditory evoked response, beginning at the time of diagnosis; Annual ophthalmology exam, beginning in early childhood. […] Retaining a patients hearing and hearing rehabilitation are primary management goals. Hearing preservation requires coordination with audiology and speech therapy to assist patients and families in coping with complications, such as by learning to use hearing aids, cochlear implants, and lip reading and sign language.

• #49 Understanding neurofibromatosis type 2 | Nursing Times

  https://www.nursingtimes.net/research-and-innovation/understanding-neurofibromatosis-type-2-29-11-2013/

  Neurofibromatosis type 2 is a rare genetic condition affecting hearing, sight and balance. […] Patients should be managed in specialty centres. Many specialties are involved in patient care including: neurosurgery; ear, nose and throat; audiology; neurology; ophthalmology; and genetics. […] All individuals who are affected should be offered a genetic test. This has implications for other family members, who may be at risk of inheriting the condition. […] Patients benefit from rehabilitation courses to help reduce feelings of isolation and negotiate the practical and emotional challenges associated with hearing loss. […] Good communication is essential. Take time to find out if they are hearing impaired; for example, is one ear affected or are they completely deaf? Check whether there are any visual impairments. Ensure all members of staff are aware of any issues regarding deafness, visual impairment and poor balance.

• #50 Neurofibromatosis Center | Neurofibromatosis Type 2 Therapy by ENT Specialists in Cleveland, Ohio | University Hospitals

  https://www.uhhospitals.org/services/ear-nose-and-throat-services/conditions-and-treatments/neurofibromatosis-2

  University Hospitals Neurofibromatosis Type 2 (NF2) Center offers unparalleled care by combining the experience, expertise, technical abilities and resources of recognized authorities to devise personalized treatment plans that enhance each patients quality of life. […] We offer standard and innovative treatment options including management through medication, radiation or surgery. Hearing rehabilitation using auditory brainstem implants (ABI) or cochlear implantation (when appropriate) are available as well. […] Because NF2 can impact hearing, patients and families may have difficulty coping with this disorder. To help increase their understanding and make them more comfortable, we provide information about treatment options, keep them updated on the patient’s progress and encourage them to ask questions. The goal is to help patients heal both medically and emotionally, and enhance their overall quality of life.

• #51 Neurofibromatosis Type 2 Clinic – Overview – Mayo Clinic

  https://www.mayoclinic.org/departments-centers/neurofibromatosis-type-2-clinic/overview/ovc-20481871

  The type of surgery depends on the size, type, location and depth of the tumor. The surgeons in the Neurofibromatosis Type 2 Clinic are skilled at using minimally invasive surgery techniques to enhance your surgical outcome and reduce the risk of complications. […] Rehabilitation specialists in speech therapy, swallowing therapy, balance therapy, dietetics, physical therapy and occupational therapy help with relevant rehabilitation. […] At the Neurofibromatosis Type 2 Clinic, experts work together as a multispecialty team to provide exactly the care you need. Because all the providers on your team discuss your specific condition together, you receive a unified message that is tailored to your specific needs and priorities. […] The Neurofibromatosis Type 2 Clinic team includes audiologists, brain surgeons (neurosurgeons), ear surgeons (neurotologists), clinic coordinator, medical geneticists, medical oncologists, neurologists, pathologists, psychiatrist, radiation oncologists, radiologists, rehabilitation medicine specialists, research coordinator, and other medical providers.

• #52 Neurofibromatosis Type 2 Treatment | UVA Health

  https://uvahealth.com/services/neurocutaneous/neurofibromatosis-type-2

  Living with neurofibromatosis type 2 is difficult. Youre dealing with symptoms like hearing and vision loss from tumors in your nervous system. […] Theres no cure for neurofibromatosis type 2, but our experienced team at UVA Health can help make the symptoms better. […] Our team includes all the different specialists you need neurologists, neurosurgeons, ophthalmologists (eye doctors), otolaryngologists (ear, nose, and throat doctors), and therapists. […] Well work with you to make a personalized treatment plan that meets your individual needs and gives you the greatest quality of life. […] We offer therapy services to help with balance, coordination, and communication. These include physical, occupational, and speech therapy. […] Our social workers can help you work through the emotional impacts of living with a chronic illness. […] At UVA Health, our team of experts is experienced in diagnosing and treating neurofibromatosis type 2.

• #53 Neurofibromatosis Type 2 Treatment | UVA Health

  https://uvahealth.com/services/neurocutaneous/neurofibromatosis-type-2

  Living with neurofibromatosis type 2 is difficult. Youre dealing with symptoms like hearing and vision loss from tumors in your nervous system. […] Theres no cure for neurofibromatosis type 2, but our experienced team at UVA Health can help make the symptoms better. […] Our team includes all the different specialists you need neurologists, neurosurgeons, ophthalmologists (eye doctors), otolaryngologists (ear, nose, and throat doctors), and therapists. […] Well work with you to make a personalized treatment plan that meets your individual needs and gives you the greatest quality of life. […] We offer therapy services to help with balance, coordination, and communication. These include physical, occupational, and speech therapy. […] Our social workers can help you work through the emotional impacts of living with a chronic illness. […] At UVA Health, our team of experts is experienced in diagnosing and treating neurofibromatosis type 2.

• #54 Genetic Disorder Reference Sheet: Neurofibromatosis Type 2 | Oncology Nursing Society

  http://www.ons.org/publications-research/voice/news-views/genetic-disorder-reference-sheet-neurofibromatosis-type-2

  NF2 has no cure, but promptly identifying and referring families with the disorder to a genetics professional and center with experience managing NF2 can help reduce morbidity and mortality. Families benefit from interprofessional care that includes ongoing psychosocial support and monitoring beginning early in childhood.

• #55 Genetic Disorder Reference Sheet: Neurofibromatosis Type 2 | Oncology Nursing Society

  https://store.ons.org/publications-research/voice/news-views/09-2023/genetic-disorder-reference-sheet-neurofibromatosis

  NF2 has no cure, but promptly identifying and referring families with the disorder to a genetics professional and center with experience managing NF2 can help reduce morbidity and mortality. Families benefit from interprofessional care that includes ongoing psychosocial support and monitoring beginning early in childhood.

• #56 Neurofibromatosis Type 2 Treatment | UVA Health

  https://uvahealth.com/services/neurocutaneous/neurofibromatosis-type-2

  Living with neurofibromatosis type 2 is difficult. Youre dealing with symptoms like hearing and vision loss from tumors in your nervous system. […] Theres no cure for neurofibromatosis type 2, but our experienced team at UVA Health can help make the symptoms better. […] Our team includes all the different specialists you need neurologists, neurosurgeons, ophthalmologists (eye doctors), otolaryngologists (ear, nose, and throat doctors), and therapists. […] Well work with you to make a personalized treatment plan that meets your individual needs and gives you the greatest quality of life. […] We offer therapy services to help with balance, coordination, and communication. These include physical, occupational, and speech therapy. […] Our social workers can help you work through the emotional impacts of living with a chronic illness. […] At UVA Health, our team of experts is experienced in diagnosing and treating neurofibromatosis type 2.

• #57 Understanding neurofibromatosis type 2 | Nursing Times

  https://www.nursingtimes.net/research-and-innovation/understanding-neurofibromatosis-type-2-29-11-2013/

  Neurofibromatosis type 2 is a rare genetic condition affecting hearing, sight and balance. […] Patients should be managed in specialty centres. Many specialties are involved in patient care including: neurosurgery; ear, nose and throat; audiology; neurology; ophthalmology; and genetics. […] All individuals who are affected should be offered a genetic test. This has implications for other family members, who may be at risk of inheriting the condition. […] Patients benefit from rehabilitation courses to help reduce feelings of isolation and negotiate the practical and emotional challenges associated with hearing loss. […] Good communication is essential. Take time to find out if they are hearing impaired; for example, is one ear affected or are they completely deaf? Check whether there are any visual impairments. Ensure all members of staff are aware of any issues regarding deafness, visual impairment and poor balance.

• #58 Neurofibromatosis Type 2 Treatment | UVA Health

  https://uvahealth.com/services/neurocutaneous/neurofibromatosis-type-2

  Living with neurofibromatosis type 2 is difficult. Youre dealing with symptoms like hearing and vision loss from tumors in your nervous system. […] Theres no cure for neurofibromatosis type 2, but our experienced team at UVA Health can help make the symptoms better. […] Our team includes all the different specialists you need neurologists, neurosurgeons, ophthalmologists (eye doctors), otolaryngologists (ear, nose, and throat doctors), and therapists. […] Well work with you to make a personalized treatment plan that meets your individual needs and gives you the greatest quality of life. […] We offer therapy services to help with balance, coordination, and communication. These include physical, occupational, and speech therapy. […] Our social workers can help you work through the emotional impacts of living with a chronic illness. […] At UVA Health, our team of experts is experienced in diagnosing and treating neurofibromatosis type 2.

• #59 Neurofibromatosis Type 2 – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK470350/

  Neurofibromatosis type 2 (NF2) is an autosomal dominant disorder characterized by the development of multiple tumors involving the central nervous system (CNS). […] This activity reviews the presentation, evaluation, and management of NF2 and highlights the role of the interprofessional team in the care of these patients. […] Multidisciplinary management is required in patients with NF2, including oncologists, neurologists, neuroradiologists, ophthalmologists, geneticists, nurse practitioners, and neurosurgeons. […] For tumor surveillance, an annual brain MRI is recommended. […] If the tumor is seen, then MRI should be done twice in the first year with an annual follow-up after that. […] Proper education should be given to the patient about the disease, the likely complications, and the difficulty of offering a complete cure. […] Interprofessional management is required in patients with NF2, including oncologists, neurologists, neuroradiologists, ophthalmologists, geneticists, nurse practitioners, and neurosurgeons.

• #60 Neurofibromatosis Center | Neurofibromatosis Type 2 Therapy by ENT Specialists in Cleveland, Ohio | University Hospitals

  https://www.uhhospitals.org/services/ear-nose-and-throat-services/conditions-and-treatments/neurofibromatosis-2

  University Hospitals Neurofibromatosis Type 2 (NF2) Center offers unparalleled care by combining the experience, expertise, technical abilities and resources of recognized authorities to devise personalized treatment plans that enhance each patients quality of life. […] We offer standard and innovative treatment options including management through medication, radiation or surgery. Hearing rehabilitation using auditory brainstem implants (ABI) or cochlear implantation (when appropriate) are available as well. […] Because NF2 can impact hearing, patients and families may have difficulty coping with this disorder. To help increase their understanding and make them more comfortable, we provide information about treatment options, keep them updated on the patient’s progress and encourage them to ask questions. The goal is to help patients heal both medically and emotionally, and enhance their overall quality of life.

• #61 Neurofibromatosis – UChicago Medicine

  https://www.uchicagomedicine.org/conditions-services/neurology-neurosurgery/neurofibromatosis

  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 they can be more knowledgeable participants in their own assessments and care.

• #62 Understanding neurofibromatosis type 2 | Nursing Times

  https://www.nursingtimes.net/research-and-innovation/understanding-neurofibromatosis-type-2-29-11-2013/

  Neurofibromatosis type 2 is a rare genetic condition affecting hearing, sight and balance. […] Patients should be managed in specialty centres. Many specialties are involved in patient care including: neurosurgery; ear, nose and throat; audiology; neurology; ophthalmology; and genetics. […] All individuals who are affected should be offered a genetic test. This has implications for other family members, who may be at risk of inheriting the condition. […] Patients benefit from rehabilitation courses to help reduce feelings of isolation and negotiate the practical and emotional challenges associated with hearing loss. […] Good communication is essential. Take time to find out if they are hearing impaired; for example, is one ear affected or are they completely deaf? Check whether there are any visual impairments. Ensure all members of staff are aware of any issues regarding deafness, visual impairment and poor balance.

• #63 Genetic Disorder Reference Sheet: Neurofibromatosis Type 2 | Oncology Nursing Society

  https://store.ons.org/publications-research/voice/news-views/09-2023/genetic-disorder-reference-sheet-neurofibromatosis

  NF2 has no cure, but promptly identifying and referring families with the disorder to a genetics professional and center with experience managing NF2 can help reduce morbidity and mortality. Families benefit from interprofessional care that includes ongoing psychosocial support and monitoring beginning early in childhood.

• #64 Neurofibromatosis Type 2 Care | Keck Medicine of USC

  https://www.keckmedicine.org/conditions/neurofibromatosis-type-2-nf2/

  Our expert specialists treat your benign neuromas caused by the genetic disorder neurofibromatosis type 2. […] If you develop acoustic neuromas, which are benign tumors, on both sides of your head, you might have a genetic disorder called neurofibromatosis type 2 (NF2). […] This genetic disorder is usually passed down from one of your parents, but sometimes you can spontaneously develop it as well. […] We can provide genetic counseling for families with a history of NF2. […] Your clinical team for NF2 treatment at the USC Acoustic Neuroma Center is made up of a multidisciplinary group of otolaryngologists, neurologists, radiation oncologists, audiologists, neurosurgeons, medical geneticists and orthopedists. […] Our expertise helps us shorten our patients average length of stay. […] We have lower readmission rates compared to other similar academic medical centers. […] We provide a range of treatments to best suit your lifestyle and medical needs. […] Our doctors and researchers work together to offer the most advanced treatment options possible.

• #65 Neurofibromatosis Type 2: Current Diagnosis & Treatment | Cleveland Clinic

  https://my.clevelandclinic.org/podcasts/neuro-pathways/neurofibromatosis-type-2-current-diagnosis-and-treatment

  So for screening, what do we need to do with these patients? What tests do we need to run as a screen? […] So there are a multitude of tests that we run in these patients. First and foremost hearing test is very, very important in these patients. […] We also recommend MRI scan of the head, which should be done annually at minimum and MRI of the entire spine, which can be done every three years. […] I actually do encourage all our patients with NF2 to see a medical genetics, not only for establishing a diagnosis from clinical criteria, but also we would like germline mutation. […] The incidence is very high. I would say nearly a hundred percent for these patients. […] So it’s very important for these patients undergo screening, MRI scans and audiogram. […] It really depends on the extent of the tumor size and how it is pressing or compressing other vital structures around in the adjacent areas, such as brainstem and other cranial nerves.

• #66 Understanding neurofibromatosis type 2 | Nursing Times

  https://www.nursingtimes.net/research-and-innovation/understanding-neurofibromatosis-type-2-29-11-2013/

  Neurofibromatosis type 2 is a rare genetic condition affecting hearing, sight and balance. […] Patients should be managed in specialty centres. Many specialties are involved in patient care including: neurosurgery; ear, nose and throat; audiology; neurology; ophthalmology; and genetics. […] All individuals who are affected should be offered a genetic test. This has implications for other family members, who may be at risk of inheriting the condition. […] Patients benefit from rehabilitation courses to help reduce feelings of isolation and negotiate the practical and emotional challenges associated with hearing loss. […] Good communication is essential. Take time to find out if they are hearing impaired; for example, is one ear affected or are they completely deaf? Check whether there are any visual impairments. Ensure all members of staff are aware of any issues regarding deafness, visual impairment and poor balance.

• #67 Neurofibromatosis Type 2 Clinic – Overview – Mayo Clinic

  https://www.mayoclinic.org/departments-centers/neurofibromatosis-type-2-clinic/overview/ovc-20481871

  Neurofibromatosis type 2 (NF2) is an uncommon genetic condition that results in the development of multiple brain tumors and spinal tumors. Almost all people with NF2 have two tumors affecting each of the hearing nerves, called vestibular schwannomas. Other benign tumors, such as meningiomas and ependymomas, may also develop and affect the brain and spine. About half the people with NF2 have a family history of the condition. […] At the Neurofibromatosis Type 2 Clinic at Mayo Clinic’s campus in Rochester, Minnesota, you will receive comprehensive care for the diagnosis and treatment of NF2. The clinic uses several new methods of genetic testing that detect nearly 100% of all mutations in the NF2 gene. Additionally, you will have full access to physical therapy, balance therapy, hearing rehabilitation, eye care, genetic counseling, fertility medicine, psychiatric care and a number of options for tumor treatment.

• #68 Neurofibromatosis Type 2 | St. Jude Care & Treatment

  https://www.stjude.org/care-treatment/treatment/genetic-syndromes/neurofibromatosis-type-2.html

  Monitoring and follow-up care for NF2 depends on how severe the disease is, the location of any tumors that may arise, and a persons overall health. Care may involve managing symptoms and surgical removal of any tumors or cancerous tissues. It may also include other treatments, like chemotherapy, to fight any cancers that may develop. […] Because NF2 is a complex condition, parents should discuss screening options for their child with an experienced doctor who knows this condition well. The goal of screening is to find and treat tumors early. Doing so allows the best outcome for patients. There are clinics throughout the country that specialize in taking care of people with NF2. […] It is also important that parents work with a genetic counselor to find experienced doctors for their child. To find a genetics counselor in your area, visit Personalized Care for Your Genetic Health.

• #69 Neurofibromatosis Type 2 | St. Jude Care & Treatment

  https://www.stjude.org/care-treatment/treatment/genetic-syndromes/neurofibromatosis-type-2.html

  People of any age with NF2 have a higher risk of cancer than people without NF2. These people should monitor their health and adopt healthy habits throughout life. It is important to continue to have regular physical check-ups and screenings. That way, any cancer can be found early at the most treatable stage. […] The St. Jude Cancer Predisposition Program is dedicated to diagnosing and screening children with a genetic predisposition for cancer. Our program offers the best clinical care possible. We engage in cutting-edge research to gain more information about genetic disorders and cancer, and to improve the care and treatment for patients who are affected by these conditions. […] Our genetic counselors, clinicians, genetics nurse practitioners, and research assistants work together to provide patients with: A complete health history, A record of cancer that happened over the past 3 generations (family tree or pedigree) to see how diseases were passed down, Physical exams to check for genetic disease, Confidential genetic counseling and testing, Cancer screenings for those with genetic disease to detect and treat cancer as soon as it occurs, Recommended cancer treatments and ways to reduce cancer risk, Genetic testing for immediate (1st degree) relatives.

• #70 Neurofibromatosis Type 2 Care | Keck Medicine of USC

  https://www.keckmedicine.org/conditions/neurofibromatosis-type-2-nf2/

  Our expert specialists treat your benign neuromas caused by the genetic disorder neurofibromatosis type 2. […] If you develop acoustic neuromas, which are benign tumors, on both sides of your head, you might have a genetic disorder called neurofibromatosis type 2 (NF2). […] This genetic disorder is usually passed down from one of your parents, but sometimes you can spontaneously develop it as well. […] We can provide genetic counseling for families with a history of NF2. […] Your clinical team for NF2 treatment at the USC Acoustic Neuroma Center is made up of a multidisciplinary group of otolaryngologists, neurologists, radiation oncologists, audiologists, neurosurgeons, medical geneticists and orthopedists. […] Our expertise helps us shorten our patients average length of stay. […] We have lower readmission rates compared to other similar academic medical centers. […] We provide a range of treatments to best suit your lifestyle and medical needs. […] Our doctors and researchers work together to offer the most advanced treatment options possible.

• #71 Genetic Disorder Reference Sheet: Neurofibromatosis Type 2 | Oncology Nursing Society

  https://store.ons.org/publications-research/voice/news-views/09-2023/genetic-disorder-reference-sheet-neurofibromatosis

  NF2 has no cure, but promptly identifying and referring families with the disorder to a genetics professional and center with experience managing NF2 can help reduce morbidity and mortality. Families benefit from interprofessional care that includes ongoing psychosocial support and monitoring beginning early in childhood.

• #72 Neurofibromatosis Type 2 – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK470350/

  Neurofibromatosis type 2 (NF2) is an autosomal dominant disorder characterized by the development of multiple tumors involving the central nervous system (CNS). […] This activity reviews the presentation, evaluation, and management of NF2 and highlights the role of the interprofessional team in the care of these patients. […] Multidisciplinary management is required in patients with NF2, including oncologists, neurologists, neuroradiologists, ophthalmologists, geneticists, nurse practitioners, and neurosurgeons. […] For tumor surveillance, an annual brain MRI is recommended. […] If the tumor is seen, then MRI should be done twice in the first year with an annual follow-up after that. […] Proper education should be given to the patient about the disease, the likely complications, and the difficulty of offering a complete cure. […] Interprofessional management is required in patients with NF2, including oncologists, neurologists, neuroradiologists, ophthalmologists, geneticists, nurse practitioners, and neurosurgeons.

• #73

  https://www.mangen.co.uk/healthcare-professionals/clinical-genomic-services/nf2/

  Neurofibromatosis Type 2 (NF2) is a variable genetic condition which causes benign tumours in the nerves coming from the brain and spinal cord and on the surrounding tissues called meninges. The hallmark feature of NF2 is the presence of bilateral tumours on the hearing and balance nerves called Vestibular Schwannomas. […] The joint speciality clinic for NF2 has been established to offer health care for patients and their families who have a diagnosis of NF2. As there may be a number of doctors involved in caring for people with NF2, a multidisciplinary approach is the best for explaining the diagnosis, assessing symptoms and deciding what treatment, if any, should be offered. These decisions are complicated and need careful consideration by the specialist team. […] NF2 clinics are held at the Genetics Department, 6th floor, St Marys Hospital. We also have two to four satellite clinics a year in each of Leeds, Sheffield, Liverpool and Newcastle. […] The paediatric NF2 service has four main clinics and eight sub clinics per year and has a dedicated paediatric team. […] There is a dedicated monthly clinic for patients receiving Bevacizumab (Avastin) treatment. […] NF2 Nurses Advice Helpline 0161 276 4619.

• #74 Understanding neurofibromatosis type 2 | Nursing Times

  https://www.nursingtimes.net/research-and-innovation/understanding-neurofibromatosis-type-2-29-11-2013/

  Neurofibromatosis type 2 is a rare genetic condition affecting hearing, sight and balance. […] Patients should be managed in specialty centres. Many specialties are involved in patient care including: neurosurgery; ear, nose and throat; audiology; neurology; ophthalmology; and genetics. […] All individuals who are affected should be offered a genetic test. This has implications for other family members, who may be at risk of inheriting the condition. […] Patients benefit from rehabilitation courses to help reduce feelings of isolation and negotiate the practical and emotional challenges associated with hearing loss. […] Good communication is essential. Take time to find out if they are hearing impaired; for example, is one ear affected or are they completely deaf? Check whether there are any visual impairments. Ensure all members of staff are aware of any issues regarding deafness, visual impairment and poor balance.

• #75 Understanding neurofibromatosis type 2 | Nursing Times

  https://www.nursingtimes.net/research-and-innovation/understanding-neurofibromatosis-type-2-29-11-2013/

  Many patients develop a facial palsy, which can make eating difficult and embarrassing if food or saliva escapes while they are eating. […] Eye involvement can mean that eyelids do not close fully, which can lead to ulceration and permanent damage to the cornea. Artificial tears and lubricating creams are vital to keep the eye moist and healthy. […] Any concerns or queries about a patient should be directed to the local team or specialist nurses involved in the patients care. Patient notes should indicate who this is and patients will usually have contact numbers for their NF2 nurse.

• #76

  https://www.mangen.co.uk/healthcare-professionals/clinical-genomic-services/nf2/

  Neurofibromatosis Type 2 (NF2) is a variable genetic condition which causes benign tumours in the nerves coming from the brain and spinal cord and on the surrounding tissues called meninges. The hallmark feature of NF2 is the presence of bilateral tumours on the hearing and balance nerves called Vestibular Schwannomas. […] The joint speciality clinic for NF2 has been established to offer health care for patients and their families who have a diagnosis of NF2. As there may be a number of doctors involved in caring for people with NF2, a multidisciplinary approach is the best for explaining the diagnosis, assessing symptoms and deciding what treatment, if any, should be offered. These decisions are complicated and need careful consideration by the specialist team. […] NF2 clinics are held at the Genetics Department, 6th floor, St Marys Hospital. We also have two to four satellite clinics a year in each of Leeds, Sheffield, Liverpool and Newcastle. […] The paediatric NF2 service has four main clinics and eight sub clinics per year and has a dedicated paediatric team. […] There is a dedicated monthly clinic for patients receiving Bevacizumab (Avastin) treatment. […] NF2 Nurses Advice Helpline 0161 276 4619.

• #77 Understanding neurofibromatosis type 2 | Nursing Times

  https://www.nursingtimes.net/research-and-innovation/understanding-neurofibromatosis-type-2-29-11-2013/

  Neurofibromatosis type 2 is a rare genetic condition affecting hearing, sight and balance. […] Patients should be managed in specialty centres. Many specialties are involved in patient care including: neurosurgery; ear, nose and throat; audiology; neurology; ophthalmology; and genetics. […] All individuals who are affected should be offered a genetic test. This has implications for other family members, who may be at risk of inheriting the condition. […] Patients benefit from rehabilitation courses to help reduce feelings of isolation and negotiate the practical and emotional challenges associated with hearing loss. […] Good communication is essential. Take time to find out if they are hearing impaired; for example, is one ear affected or are they completely deaf? Check whether there are any visual impairments. Ensure all members of staff are aware of any issues regarding deafness, visual impairment and poor balance.

• #78 Understanding neurofibromatosis type 2 | Nursing Times

  https://www.nursingtimes.net/research-and-innovation/understanding-neurofibromatosis-type-2-29-11-2013/

  Many patients develop a facial palsy, which can make eating difficult and embarrassing if food or saliva escapes while they are eating. […] Eye involvement can mean that eyelids do not close fully, which can lead to ulceration and permanent damage to the cornea. Artificial tears and lubricating creams are vital to keep the eye moist and healthy. […] Any concerns or queries about a patient should be directed to the local team or specialist nurses involved in the patients care. Patient notes should indicate who this is and patients will usually have contact numbers for their NF2 nurse.

• #79 Neurofibromatosis Type 2 in Pasadena & Glendale | Andre Panossian, M.D.

  https://drpanossian.com/neurofibromatosis/neurofibromatosis-type-2/

  Following treatment for NF2, ongoing monitoring and follow-up care are essential to evaluate treatment effectiveness, monitor tumor growth, and address emerging symptoms or concerns. Dr. Panossian provides personalized follow-up care plans for patients with NF2, including regular evaluations, imaging studies, and consultations as needed. By closely monitoring patients’ progress and adjusting treatment strategies as necessary, Dr. Panossian ensures optimal outcomes and continued support for individuals living with NF2.

• #80 Neurofibromatosis Type 2 (NF2) Signs & Symptoms | Rush

  https://www.rush.edu/conditions/neurofibromatosis-type-2-nf2

  Rush providers treat symptoms caused by neurofibromatosis type 2 (NF2) tumors and, when possible, help you prevent complications from NF2. […] Your plan may involve one or more of the following: […] Our treatment goal is to prevent (when possible) complications from NF2 and address them when they exist. […] You will visit with your provider on a regular basis to monitor your symptoms; together, we will determine when they need to be addressed. […] Complications of NF2 can include the following: Deafness, Severe balance problems, Facial nerve paralysis, Spinal cord compression, Swallowing difficulties (dysphagia), Vision problems. […] You may need surgery to remove vestibular schwannoma (also known as acoustic neuroma) or other tumors. […] The timing and type of surgery used for NF2 varies depending on your symptoms and how quickly they progress. […] Based on monitoring your symptoms, we will discuss with you whether surgery is needed, and, if so, which type. […] Your providers may recommend radiation therapy to shrink tumors. This decision will depend on where your tumors are and how much they affect your quality of life.

• #81 Neurofibromatosis Type 2 (NF2) Signs & Symptoms | Rush

  https://www.rush.edu/conditions/neurofibromatosis-type-2-nf2

  Rush providers treat symptoms caused by neurofibromatosis type 2 (NF2) tumors and, when possible, help you prevent complications from NF2. […] Your plan may involve one or more of the following: […] Our treatment goal is to prevent (when possible) complications from NF2 and address them when they exist. […] You will visit with your provider on a regular basis to monitor your symptoms; together, we will determine when they need to be addressed. […] Complications of NF2 can include the following: Deafness, Severe balance problems, Facial nerve paralysis, Spinal cord compression, Swallowing difficulties (dysphagia), Vision problems. […] You may need surgery to remove vestibular schwannoma (also known as acoustic neuroma) or other tumors. […] The timing and type of surgery used for NF2 varies depending on your symptoms and how quickly they progress. […] Based on monitoring your symptoms, we will discuss with you whether surgery is needed, and, if so, which type. […] Your providers may recommend radiation therapy to shrink tumors. This decision will depend on where your tumors are and how much they affect your quality of life.

• #82 Early prediction of functional prognosis in neurofibromatosis type 2 patients based on genotype–phenotype correlation with targeted deep sequencing | Scientific Reports

  https://www.nature.com/articles/s41598-022-13580-9

  Regardless of treatment, the clinical progression of neurofibromatosis type 2 (NF2), particularly in terms of hearing, swallowing, and gait, tend to worsen throughout the patients lives. […] Patients commonly experience hearing loss, swallowing difficulties, and gait abnormalities, with many interventions required to control the progression of numerous tumors, significantly interfering with their daily life. […] Despite the availability of systematic and multimodal treatments, the symptoms associated with NF2 tend to worsen throughout the patients lives. […] To date, a limited number of studies have reported genotype-phenotype correlations as predictors of detailed functional prognosis in NF2 patients. […] Given recent improvements in these patients prognoses due to the development of more effective treatment procedures, the issues of ADL maintenance and the effect of persisting symptoms on patient QOL are becoming increasingly important.

• #83 Early prediction of functional prognosis in neurofibromatosis type 2 patients based on genotype–phenotype correlation with targeted deep sequencing | Scientific Reports

  https://www.nature.com/articles/s41598-022-13580-9

  We analyzed the clinical and genetic predictors of the functional disability of NF2 patients. […] Consequently, we showed that patients of Mild had different functional prognoses compared with other NF2 patients. […] The prediction of detailed functional outcomes can be used to plan better strategies for life-long disease management and social integration.

• #84 Neurofibromatosis | Vanderbilt Health Nashville, TN

  https://www.vanderbilthealth.com/clinic/neurofibromatosis

  Neurofibromatosis (NF) can cause a wide range of symptoms, including noncancerous tumors along your nerves. […] The Vanderbilt Neurofibromatosis Clinic provides treatment and monitoring for the symptoms of neurofibromatosis and schwannomatosis. […] We offer care and support for children and adults with NF throughout their lives, to help them have the best possible quality of life. […] We treat all neurofibromatosis conditions, including: Neurofibromatosis type 2 (NF2). […] A wide variety of symptoms can come with NF-1, NF-2 and schwannomatosis. […] Successful management of neurofibromatosis requires a deep level of understanding. Our doctors have dedicated their careers to treating patients with neurofibromatosis and similar conditions. […] We offer a full range of tests, treatments and services, including: Monitoring, long-term; Symptom management.

• #85 Neurofibromatosis Type 2: Case Presentation and Review of the Literature | IntechOpen

  https://www.intechopen.com/chapters/1136889

  Patients diagnosed with neurofibromatosis type 2 (NF2) are likely to develop vestibular schwannomas, meningiomas, and other tumors that may be difficult to treat. […] This case highlights the medical and surgical complexity of care of patients with NF2 and the need for ongoing surveillance by a multidisciplinary medical team. […] The patients symptoms were clinically related to cerebral compression and hydrocephalus caused by his right occipital and large cerebellar tumor. He was offered surgical intervention. […] The patient was followed in our multidisciplinary CNS clinic every 4 months thereafter with an MRI of the brain with and without contrast. […] The central goal of management of NF2 should be to maintain patient function and quality of life while managing tumor load. This can be extremely challenging.

• #86 Neurofibromatosis Type 2 in Pasadena & Glendale | Andre Panossian, M.D.

  https://drpanossian.com/neurofibromatosis/neurofibromatosis-type-2/

  Following treatment for NF2, ongoing monitoring and follow-up care are essential to evaluate treatment effectiveness, monitor tumor growth, and address emerging symptoms or concerns. Dr. Panossian provides personalized follow-up care plans for patients with NF2, including regular evaluations, imaging studies, and consultations as needed. By closely monitoring patients’ progress and adjusting treatment strategies as necessary, Dr. Panossian ensures optimal outcomes and continued support for individuals living with NF2.

• #87 Early prediction of functional prognosis in neurofibromatosis type 2 patients based on genotype–phenotype correlation with targeted deep sequencing | Scientific Reports

  https://www.nature.com/articles/s41598-022-13580-9

  We analyzed the clinical and genetic predictors of the functional disability of NF2 patients. […] Consequently, we showed that patients of Mild had different functional prognoses compared with other NF2 patients. […] The prediction of detailed functional outcomes can be used to plan better strategies for life-long disease management and social integration.

• #88 Early prediction of functional prognosis in neurofibromatosis type 2 patients based on genotype–phenotype correlation with targeted deep sequencing | Scientific Reports

  https://www.nature.com/articles/s41598-022-13580-9

  We analyzed the clinical and genetic predictors of the functional disability of NF2 patients. […] Consequently, we showed that patients of Mild had different functional prognoses compared with other NF2 patients. […] The prediction of detailed functional outcomes can be used to plan better strategies for life-long disease management and social integration.

• #89 Neurofibromatosis Type 2: Case Presentation and Review of the Literature | IntechOpen

  https://www.intechopen.com/chapters/1136889

  The literature shows strong evidence that these patients are best managed by a multidisciplinary team involving genetics, neurosurgery, otolaryngology, ophthalmology, neurology, radiology, pathology, and audiology. […] We recommend routine surveillance in all patients with NF2 whether or not they are symptomatic from their tumors. […] Surgery is often the treatment of choice when an NF2 patient has a tumor that is actively growing. […] Vestibular schwannomas should be surgically addressed when they are growing because they can cause brainstem compression, hearing loss, and facial paralysis. […] A Chiari malformation is defined as the caudal displacement of the cerebellar tonsils below the level of the foramen magnum. […] Stereotactic radiosurgery (SRS), or radiosurgery, is a treatment of tumors and other lesions using well-collimated, multiple small beams of ionizing radiation to treat a target, while reducing toxic exposure to surrounding tissues. […] There are established chemotherapy treatments for NF2.

• #90 Neurofibromatosis Type 2: Current Diagnosis & Treatment | Cleveland Clinic

  https://my.clevelandclinic.org/podcasts/neuro-pathways/neurofibromatosis-type-2-current-diagnosis-and-treatment

  So we know that patients who have NF2 mutation do have mutation in the merlin protein, which is a tumor suppressor protein, which actually causes activation. […] So certainly, these tumors are at a very difficult location. […] I don’t think that there’s any certain age group under which we wouldn’t treat. However, it’s important to avoid radiation as long as we can. […] I absolutely agree by caring for these patients is very important to take a multi-disciplinary approach and involve the key medical and skilled surgical specialist for comprehensive management. […] So I joined Cleveland Clinic last year. My first goal is to start a consolidating care for a neurofibromatosis type 2 patients by really developing a comprehensive, multidisciplinary NF2 Clinic. […] I think one of the most important aspect in caring for patients with NF2 is really doing a very systematic, comprehensive, and multidisciplinary care.

• #91 Neurofibromatosis Type 2: Case Presentation and Review of the Literature | IntechOpen

  https://www.intechopen.com/chapters/1136889

  The literature shows strong evidence that these patients are best managed by a multidisciplinary team involving genetics, neurosurgery, otolaryngology, ophthalmology, neurology, radiology, pathology, and audiology. […] We recommend routine surveillance in all patients with NF2 whether or not they are symptomatic from their tumors. […] Surgery is often the treatment of choice when an NF2 patient has a tumor that is actively growing. […] Vestibular schwannomas should be surgically addressed when they are growing because they can cause brainstem compression, hearing loss, and facial paralysis. […] A Chiari malformation is defined as the caudal displacement of the cerebellar tonsils below the level of the foramen magnum. […] Stereotactic radiosurgery (SRS), or radiosurgery, is a treatment of tumors and other lesions using well-collimated, multiple small beams of ionizing radiation to treat a target, while reducing toxic exposure to surrounding tissues. […] There are established chemotherapy treatments for NF2.

• #92 Neurofibromatosis Type 2: Current Diagnosis & Treatment | Cleveland Clinic

  https://my.clevelandclinic.org/podcasts/neuro-pathways/neurofibromatosis-type-2-current-diagnosis-and-treatment

  So we know that patients who have NF2 mutation do have mutation in the merlin protein, which is a tumor suppressor protein, which actually causes activation. […] So certainly, these tumors are at a very difficult location. […] I don’t think that there’s any certain age group under which we wouldn’t treat. However, it’s important to avoid radiation as long as we can. […] I absolutely agree by caring for these patients is very important to take a multi-disciplinary approach and involve the key medical and skilled surgical specialist for comprehensive management. […] So I joined Cleveland Clinic last year. My first goal is to start a consolidating care for a neurofibromatosis type 2 patients by really developing a comprehensive, multidisciplinary NF2 Clinic. […] I think one of the most important aspect in caring for patients with NF2 is really doing a very systematic, comprehensive, and multidisciplinary care.

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