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Neurofibromatosis type 1
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Neurofibromatosis type 1

I am a 23 year old male. Have a history of NF1, cherubism, and fibrous dysplasia. I am aware that acoustic neuromas occur mostly in  NF2, but have not read any literature that they occur in NF1. Regardless my doctors are concerned about it. I had a MRI of my Brain, C and T spine for an unrelated problem of brisk reflexes. The MRI only showed an arachnoid cyst in my temporal lobe (forget which one) Was told not to worry. Regardless I do have some mild hearing loss in one ear which has not been fully explained. I also recently had a giant cell tumor on my left ear which was only on the skin and was successfully removed with clean margins. (Doctors thought this was a rare complicaiton of NF and/or Cherubism/FD)

My questions are, with this complicated history what types of tests should I have in the future to help prevent serious ENT issues.?
Would an MRI show all types of growths on the  acoustic nerve (giant cell tumor?)
I know with NF a tumor can grow on  any nerve, but is there an increase in acoustic neruomas vs the general population?
Can anything explain the giant cell growth on my ear, I thought these only occur in deep tissues and bone?
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What types of tests should I have in the future to help prevent serious ENT issues.? In general, there is no specific test. If your MRI is normal, twice a year follow up and an examination should be sufficient.

Would an MRI show all types of growths on the  acoustic nerve (giant cell tumor?) Typically, yes.

I know with NF a tumor can grow on  any nerve, but is there an increase in acoustic neruomas vs the general population? Yes, but this is associated with NF 2.
Can anything explain the giant cell growth on my ear, I thought these only occur in deep tissues and bone? No, likely this is a sporadic event.

Eric Genden, MD
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