Doctor insights on:
Best Neurofibromatosis Treatment
Possible: NIH diagnostic criteria for NF1 with two or more of following features:1)6 or more café-au-lait macules over 5 mm in diameter prepubertal individuals over 15 mm in greatest diameter in postpubertal..2) 2or more neurofibromas or one plexiform neurofibroma.3)Freckling in armpit or groin areas4)Optic glioma (optic nerve tumor)5) > 2 Lisch nodules(iris of eye)6)typical bone lesions 7)1deg relative nf1 ...Read moreSee 1 more doctor answer
Neurofibromatosis: There is no cure for neurofibromatosis and the goal of treatment is to relieve symptoms. Painful cutaneous and subcutaneous tumors and those that occur on visible areas of the body may be removed surgically. Surgery also may be performed to remove schwannomas and nerve tissue tumors (neurofibromas) that cause pain, sensory loss, and loss of function. ...Read moreSee 2 more doctor answers
Not yet!: No cure. I would however recommend seeing a dermatologist. They can help monitor for other associated conditions in addition to the skin. There are different subsets and severities of neurofibromatosis (nf). They can help make the diagnosis, excise neurofibromas and coordinate care if needed (ophthalmology, neurology, ent, orthopedics, genetics). ...Read moreSee 2 more doctor answers
Medical followup +: Regular medical checkups should be done. If you have neurologic abnormalities, get periodic examinations. Keep a positive attitude. Stay as active as you can. Think about contacting others with your problem, such as a neurofibromatosis support group (check online). ...Read moreSee 1 more doctor answer
Nervecell overgrowth: Neurofibromatosis is inherited problem with varying degrees of involvement from mild to severe. Neurofibroma is benign tumor that originates from the nerve cells. This tumor usually arise from nerves in the skin or jut under the skin.Type 1 usually appears in children with brown flat skin spots, freckling in armpits, and soft tumors under the skin. Other rarer types involve more brain tumors. ...Read moreSee 2 more doctor answers
No: There is no cure for neurofibromatosis and goal of treatment is to relieve symptoms. Painful cutaneous and subcutaneous tumors and those that occur on visible areas of the body may be removed surgically. Surgery also may be performed to remove schwannomas and nerve tissue tumors (neurofibromas) that cause pain, sensory loss, and loss of function. ...Read more
If I treat neurofibromatosis will it be gone, or do I need to keep worrying? I have so much on my mind.
Its In your genes: If you do have one of the many forms of nf you have it forever. Treatment programs focus on early detection of some of the possible complications (abnormal growths in vital areas) & educating you on your form. Many cases represent new mutations. Some are inherited from parents who never knew they carried the genes. Your dr can refer you to a genetic counselor to begin your orientation. ...Read moreSee 2 more doctor answers
Learn what U can: Nf is not a single disease but a collection of disorders. Some are mild & have minimal effect & some feature slow growing tumors that can distroy hearing or other vital organs.You need to verify the form you are working with and its features. A genetic counselor can help you sort thru much of the written material so you can make an informed decision on any proposal. ...Read moreSee 1 more doctor answer
I have chiari and neurofibromatosis both type 1, with a neurofibroma around c7. My headaches are daily and pretty intense. Is surgery a good option?
If true chiari pain: Typical headache in chiari i patients is occipital pain with coughing, sneezing, lifting, etc.).Have to differentiate between primary headaches such as migraines or tension pain, and headaches due to this typical posterior fossa syndrome.“chiari” headaches may coexist with migraine headaches, complicating treatment.Frequent coexistence of musculoskeletal neck pain.Need good neurologist to sort out. ...Read more
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