Because symptoms and rate of development vary greatly with NF1, treatment must be highly individualized. Mayo Clinic, an experienced team takes a coordinated approach to care of each patient, continually monitoring patients for development of new symptoms.
Members of the team may include a:
* Geneticist (specialist in inherited disorders)
* Genetic counselor
* Neurologist (specialist in diseases of the nervous system)
* Dermatologist (specialist in skin disorders)
* Developmental pediatrician (specialist in children's development)
* Speech pathologist
* Neuro-oncologist and oncologist (specialists in cancers of the central and peripheral nervous system)
* Neurosurgeon (a nerve, brain or spinal cord surgeon)
* Ophthalmologist (specialist in eye disorders)
* Orthopedic doctor (specialist in the skeletal system)
* Plastic surgeon
* Radiologist (specialist in interpreting medical images)
* Social worker
Treatment of Neurofibromas
Treatment depends on the tumor's location, if it's disfiguring or causing pain, what functions it might affect, and how fast it's growing. Options may include observation, complete or partial removal and chemotherapy.
Mayo Clinic doctors are also investigating new medications to slow or stop the growth of neurofibromas, especially those that affect several nerves (plexiform neuromas) and those near the spine (paraspinal neurofibromas).
Specialists from different areas — depending on the tumor's location — collaborate to determine the best options, which are then discussed with the patient (or parent).
Neurofibromas are challenging to remove because they involve nerves. Damage to nerves can cause numbness, paralysis, disfigurement or dysfunction.
Mayo Clinic surgeons are highly skilled and are aided by the high-quality images provided by Mayo radiologists, improving possible outcomes.
They have also successfully applied novel and less-invasive techniques, such as liposuction, to reduce risks to surrounding nerve tissue.
Treatment of Optic Pathway Gliomas
Because of the sensitive nature of its location, the usual treatment of an optic pathway glioma is close observation. Fortunately, the majority of patients with optic glioma have no symptoms and sometimes tumors regress without intervention. However, if vision is threatened, chemotherapy often can successfully shrink the tumor.
Treatment of Bone Abnormalities and Scoliosis
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Mayo Clinic has a large and well-respected orthopedic surgery practice to help address bone and skeletal problems, if present. Mayo also has surgeons with special interest and expertise in NF1-related bone complications.
Treatment of Cognitive Problems
Developmental pediatricians can help recognize a learning disability early on so that children get attention and assistance to improve their educational experience and quality of life. Psychologists and language specialists can help evaluate and treat problems of development of motor skills and language.
Psychological and Genetics Concerns
Psychologists and genetic counselors can help patients and their families cope with the stress that living with NF1 can create. They also can help patients and their families make difficult decisions concerning if and when to pursue genetic testing.