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Doctor insights on: Neurofibromatosis Type 1 Life Expectancy

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Dr. Gerald Mandell Dr. Mandell
Nuclear Medicine
48 years in practice
Jefferson Medical College of Thomas Jefferson University
1

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Help! Is it possible to have a lot of cafe au lait spots and not have neurofibromatosis?

Help! Is it possible to have a lot of cafe au lait spots and not have neurofibromatosis?

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

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Dr. Gerald Mandell
165 Doctors shared insights

Neurofibromatosis (Definition)

A genetic condition characterized by cafe au lait spots, which are pigmented patches of skin, and benign ...Read more


Dr. Ed Friedlander Dr. Friedlander
Pathology
40 years in practice
Northwestern University Feinberg School of Medicine
2

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What is the life expectancy for people with neurofibromatosis type 1?

What is the life expectancy for people with neurofibromatosis type 1?

Hugely variable: No two cases are alike, and the illness is modified by other genes. One of the board members of one of my medical schools was a successful and popular physician who had the illness. Best wishes.

Dr. Johanna Fricke Dr. Fricke
Pediatrics - Developmental & Behavioral
46 years in practice
University of Alabama School of Medicine
3

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My son has neurofibromatosis type 1 and he is only 2 years old. What symptoms can I expect?

My son has neurofibromatosis type 1 and he is only 2 years old. What symptoms can I expect?

NF 1 is caused by: Mutations of the NF gene, 17q11.2. Clinical course varies widely depending largely on location & size of brain, skin, eye & other tumors. Initial evaluations by a geneticist, ped. Neurologist, ped. Ophthalmologist, developmental/behavioral pediatrician. & Early Intervention, http://www. Dds. Ca.gov/EarlyStart/home. Cfm., guide management. Learning Disabilities & ADHD are common. See www. Ctf. Org.

Dr. Ellen Altenburg Dr. Altenburg
Pediatrics
27 years in practice
University at Buffalo, The State University of New York School of Medicine & Biomedical Sciences
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What do you suggest if my son has neurofibromatosis type 1 and hi is only 2years old what can I expect?

What do you suggest if my son has neurofibromatosis type 1 and hi is only 2years old what can I expect?

See genetics special: Since you are on the internet at this site, I'm sure you have already educated yourself about the risks of learning disabilities, vision issues, cancer, high blood pressure, seizures, skin tumors etc. The complications can be very diverse, and many children have limited issues. A genetics specialist would be better suited to discuss this with you, and direct you to the appropriate specialist

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Dr. Scott McLean Dr. McLean
Clinical Genetics
31 years in practice
Uniformed Services University of the Health Sciences F. Edward Hebert School of Medicine
5

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Would neurofibromatosis type 1 disqualify me from donating sperm to a sperm bank?

Would neurofibromatosis type 1 disqualify me from donating sperm to a sperm bank?

Probably: As you know, neurofibromatosis type 1 (nf1) can affect some people mildly, but in others it can cause serious birth defects. The chance that a sperm donor might pass the nf1 mutation to his biological child is 50% for each pregnancy. This would probably be considered an excessively high risk, so I suspect that sperm (and egg) donors with confirmed nf1 would not be invited to donate.

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Dr. Addagada Rao Dr. Rao
Surgery
52 years in practice
Andhra University, Guntur Medical College
6

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Can neurofibromatosis type 1 progress to neurofibromatosis type 2?

Can neurofibromatosis type 1 progress to neurofibromatosis type 2?

NO: Tow distinct gene mutations. Neurofibroma nf I & nf ii are both inhirted tppe I will show cutaneous, neurological and ortho malformations. Tend to be non cancerous nf ii is less frequent (i in 40000) less skin lesions more neuroligical tumors, like maningiomas, bil aucoatic neuromas, schiwanomas, gliomas is part of misme syndrome.

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Dr. Gerald Mandell Dr. Mandell
Nuclear Medicine
48 years in practice
Jefferson Medical College of Thomas Jefferson University
8
Dr. Gerald Mandell Dr. Mandell
Nuclear Medicine
48 years in practice
Jefferson Medical College of Thomas Jefferson University
9
Dr. Tanya Russo Dr. Russo
Pediatrics
21 years in practice
Nova Southeastern University College of Osteopathic Medicine
10

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Can you tell me about the life expectancy of a person with neurofibromatosis type 2?

Shortened: Life expectancy for people with NF-2 is generally shortened compared to non-affected and NF-1 affected people, but it is also highly dependent on a number of potential conditions, and available treatments. I've added a link that is more comprehensive, and I hope it helps. Http://www. Ctf. Org/pdf/brochures/NF2_Info_for_Patients_Families. Pdf

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Dr. Gerald Mandell Dr. Mandell
Nuclear Medicine
48 years in practice
Jefferson Medical College of Thomas Jefferson University
11

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What to do if I have neurofibromatosis but I ain't show if it's type 1 of type 2 does anyone know how 2 find out?

What to do if I have neurofibromatosis but I ain't show if it's type 1 of type 2 does anyone know how 2 find out?

Physician for help: Neurofibromatosis, inherited, with varying involvement from mild to severe. Neurofibroma is benign tumor that originates from the nerve cells. Tumors usually arise from nerves in or under skin. Type1 usually appears in children with brown flat skin spots, freckling in armpits, and soft tumors under skin and sometimes bone deformity. Type 2 usually brain tumors, vestibular schwannomas, acoustic neuromas.

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Dr. Gerald Mandell Dr. Mandell
Nuclear Medicine
48 years in practice
Jefferson Medical College of Thomas Jefferson University
12

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I had neurofibromatosis type ii, I feel numbness right above knee ocationally one day after cycling, could it be ligament tore? I had muscleache there

I had neurofibromatosis type ii, I feel numbness right above knee ocationally one day after cycling, could it be ligament tore? I had muscleache there

Consult physician: Probably related to exercise endeavor. However consult your physician. About 50% of patients develop spinal lesions.40% of the spinal lesions are symptomatic. Spinal tumours separated in two groups. Intramedullary lesions in spinal tissue belong to spinal astrocytomas or ependymomas. Extramedullary lesions in space between the surface of spinal cord & bony wall of canal, schwannomas & meningiomas.

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Dr. Gerald Mandell Dr. Mandell
Nuclear Medicine
48 years in practice
Jefferson Medical College of Thomas Jefferson University
13

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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?

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.

Dr. Bennett Machanic Dr. Machanic
Neurology
48 years in practice
Johns Hopkins University School of Medicine
14
Dr. Olav Jaren Dr. Jaren
Neurology
15 years in practice
The University of Iowa Roy J. and Lucille A. Carver College of Medicine
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My sister has NEUROFIBROMATOSIS type 2. She only has the cafe spots on her body. Will I develop it too? Is there a chance she will get a tumor? : (

Neurofibromatosis: Are you certain your sister has NF2? What about NF1? The reason for asking is that cafe au lait spots are not used to diagnose NF2. What about your parents? Many cases are spontaneous, and you may never develop symptoms of NF. It depends on which type we are talking about and what other family members have it. Once you are sure of the diagnosis then your questions may be answered.

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Dr. Gerald Mandell Dr. Mandell
Nuclear Medicine
48 years in practice
Jefferson Medical College of Thomas Jefferson University
16

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Can cycling after not cycling for long causes occasional numbness around knee after 1 day of cycling? I have neurofibromatosis type ii

Can cycling after not cycling for long causes occasional numbness around knee after 1 day of cycling? I have neurofibromatosis type ii

Consult physician: Probably related to exercise endeavor. However consult your physician. About 50% of patients develop spinal lesions.40% of the spinal lesions are symptomatic. Spinal tumours separated in two groups. Intramedullary lesions in spinal tissue belong to spinal astrocytomas or ependymomas. Extramedullary lesions in space between the surface of spinal cord & bony wall of canal, schwannomas & menin

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Dr. Tanya Russo Dr. Russo
Pediatrics
21 years in practice
Nova Southeastern University College of Osteopathic Medicine
17

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Can a person with neurofibromatosis type 2 die young?

NF-2: The average life expectancy for someone with NF2 is 65 years of age with appropriate screening and intervention.

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Dr. Gerald Mandell Dr. Mandell
Nuclear Medicine
48 years in practice
Jefferson Medical College of Thomas Jefferson University
18

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What are types of neurofibromatosis besides acoustic neurofibromatosis?

What are types of neurofibromatosis besides acoustic neurofibromatosis?

3 major types: (nf 1 consists of two or more neurofibromas on or under the skin, or one plexiform neurofibroma, café au lait spots (pigmented, light brown macules, freckles of armpit and groin, lisch nodules (hamartomas of iris), optic nerve gliomas and skeletal deformities. Nf2 centrla nf with bilateral acoustic neuromas (balance, hearing, ringing ears). Nf3 schwannomas develop cranial, spinal and peripheral nerves.

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Dr. Gerald Mandell Dr. Mandell
Nuclear Medicine
48 years in practice
Jefferson Medical College of Thomas Jefferson University
19

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Is there anything that can be done about neurofibromatosis? Either to slow or stop the growth of new tumors? Reduce the size of existing ones?

Not usually: Many women with nf1 note increase in growth of preexisting tumors during pregnancy.Adults with nf1 acquire more tumors with age. Nfs develop gradually over time, may continue to grow in size for period of time. Nothing person can do to prevent. Nf. May be removed by surgery or occasionally by laser. If neurofibroma is removed, may or may not grow back. No effect by foods, smoking, caffeine or heat.

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Dr. James Goodrich Dr. Goodrich
Neurosurgery
37 years in practice
Columbia University College of Physicians and Surgeons
20

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How long can someone with neurofibromatosis type 2 live?

How long can someone with neurofibromatosis type 2 live?

Neurofibromatosis: It depends on how severely affected the patient is with the disorder. The earlier the diagnosis and the most number of lesions and location (particularly in the spine and brain) diagnosed can affect how long someone will live. In my practice I have adults doing well in the midlife yet have lost patients to the disorder as teenagers so it is very variable.

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