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?
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.
Copyright 1994-2017MedHelp International.All rights reserved. MedHelp is a division of Aptus Health.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.