Neurofibromatosis?

[anothereveryman]

Throughout my diagnosis of intracochlear schwannoma (similar to other acoustic neuromas but specifically a tumor on the cochlea itself), I was assured this was a rare illness and that my chances of a similar tumor growing on the other side, taking what's left of my hearing, was still low. However, my most recent visit to the local ENT, post-surgery by one month and with the last stitches removed, had that ENT comment that I may have neurofibromatosis. He said that this was a common cause of inner ear tumors and hearing loss and was to blame. He said normally neurofibromatosis causes tumors on the nerve itself but remarked that perhaps my case was a little unusual because the tumor was on the cochlea itself.

I looked this up, and it spooked me greatly. I have not had any genetic tests done as far as I know, but my father does have rather uneven skin, laden with skin tags, large freckles, and the like, and has even had surgery for skin cancer. Images I saw online of the condition look like amplifed and worsened versions of what I saw on him.

My skin is somewhat smoother, if with a few signifigant freckles and a few skin tags of my own, but otherwise I have none of the peripheral pain symptoms that are signs of neurofibromatosis, and my hearing tests with my remaining ear say it works quite well.

I'm not exactly sure what I'm asking for but I'm in very deep anxiety now all the same. Am I doomed to eventually lose my other side's hearing? Is there anything whatsoever I can do, with diet or lifestyle, to even slightly reduce the chance of additional tumors? I feel like my body is a time bomb at this point, if the ENT was right. I'm very scared.

[ANGuy]

Age is a part of it.  I am 47 and when I asked one of my Drs. if I could have NF2 he said no.  When I asked how he knew, he said that at my age I would already have had several tumors over the years.  NF2 is associated with AN's in younger people.  What constitutes "younger" I don't know.

[Cheryl R]

You do not have NF2 or your father.   What your father is what many older adults have over time as they age.    The lesions one with NF2 can have is under the skin a growth actually on a nerve and can become quite painful.     I also have a feeling that your ENT may not have a clue about NF2.          There are versions of NF2 where one can get it at a young age and is usually hereditary. These are more severe cases.    A milder form can be found at an older age and is usually just having more than AN and is on both sides.    There are other brain tumors also one can have.   Meningioma is one.     I need to look up what else can occ be found as know there is another possible one.    The only way you would have NF2 if another tumor is found on your other side or another type of brain tumor is found.    Look under www.nf.org         The info is found under childrens brain tumor foundation.                I was 49 when first AN was found and had surgery.     The one on my other side did not show up until almost 3 yrs later.    Another one then showed up on my first side.     So I have had 3 tumors.    the 2nd one on the first side was a facial nerve tumor.
    It has now been 6 yrs since had last surgery so hoping I am done with any more tumors.        I was allowed to go this year with no MRI unless have new symptoms.                        I hope this is help as the last 2 posts were of 2 different people.                            Cheryl R

[anothereveryman]

You do not have NF2 or your father.   What your father is what many older adults have over time as they age.    The lesions one with NF2 can have is under the skin a growth actually on a nerve and can become quite painful.     I also have a feeling that your ENT may not have a clue about NF2.          There are versions of NF2 where one can get it at a young age and is usually hereditary. These are more severe cases.    A milder form can be found at an older age and is usually just having more than AN and is on both sides.    There are other brain tumors also one can have.   Meningioma is one.     I need to look up what else can occ be found as know there is another possible one.    The only way you would have NF2 if another tumor is found on your other side or another type of brain tumor is found.    Look under www.nf.org         The info is found under childrens brain tumor foundation.                I was 49 when first AN was found and had surgery.     The one on my other side did not show up until almost 3 yrs later.    Another one then showed up on my first side.     So I have had 3 tumors.    the 2nd one on the first side was a facial nerve tumor.
    It has now been 6 yrs since had last surgery so hoping I am done with any more tumors.        I was allowed to go this year with no MRI unless have new symptoms.                        I hope this is help as the last 2 posts were of 2 different people.                            Cheryl R

I admit that the ENT, as kind as he was to get me referred to House Clinic and to St Vincent's to get the surgery done to remove my intracochlear schwannoma, is an older man, may have some stubborn opinions about medical things, and had to be reminded what kind of tumor I had, even after he was speaking about ear never tumors (my tumor was in the cochlea itself, not on the nerve). Perhaps his diagnosis isn't necessarily absolute.

I have no "cafe au lait" spots as I have seen them on online images. I have some freckles on my skin and even some somewhat larger ones (two in particular on my stomach) but they are not dime-sized or larger as per the intended designation, nor do I have six or more of them, nor do I have patches of freckles on my underarms, bumps under my skin (except one that was on my back and could be slid around, curiously, before it apparently went away), nor do I have any pain related to these imperfections on my skin, and pain is also one of the diagnosing features.

I suppose it's hard for me to doubt a doctor and I feel like a fool or in denial for doing so.

Oh, I'm 33 if that helps for figuring this out. My tumor took my hearing and my balance starting when I was 32.