Possible AN?

[mt15]

Hello, all

Here is my situation:  My sister was diagnosed with AN several years ago, and had surgery (she is 10 years older than me). A year or two later her youngest son was also diagnosed with AN, after being treated for quite a while for recurrent ear infections. He also had surgery.  I have had tinnitus for over 10 years, which is steadily getting worse, I also have hearing loss, slight on left side, moderate on right side, with most of the loss being in mid-ranges.  I went to an audiologist for hearing test several years ago, was told it was age related and there was nothing to be done for the tinnitus (I am 54).  Then, about six months ago I went to a new MD since I had changed jobs, mentioned the hearing issues and family history and was referred to an ENT.  They retested my hearing and I was told this was not age-related (due to the pattern of loss in mid-ranges) and an MRI (both with and without contrast) was ordered.  The MRI came back negative.  I was given the news by phone, when I pressed for any more information on what my options were (the tinnitus is pretty bothersome and getting worse), I wasn't really offered anything and no followup visits were scheduled.

Here's my question:  my sister is telling me I should seek out another opinion, that a small AN could have been missed, but it seems that from what I have read on the board here that the MRI is gospel.  So since my MRI is negative, AN has been ruled out.  Could the MRI be falsely negative?  Should I continue to pursue this due to family history?

[leapyrtwins]

I'm not a doctor, but IMO if your MRI shows no AN, you have no AN.

The best way to diagnose one is with a MRI with gadolinium contrast.  So, since your MRI used contrast, I would imagine you're "clean". 

However, I'd definitely get a copy of your MRI (it usually comes on a CD - and you are entitled to a copy) and the radiologist's report and check them out yourself.  You can usually see the AN quite clearly on a MRI - even if it's small.  You could also take your CD to another doc for a second opinion if you think your current doctor is wrong.

There is usually not a family history with ANs (sometimes there is an exception to this), unless you are NF2.

Jan

[Cheryl R]

MRIs are gospel but the quality of the MRI  occ can make a diffference.      Occ the internal auditory canal may not be done with the best exposure and have thin cut slides done of it.       They are not said to be hereditary but there is a rare case where threy are in the same family.                 The odds are very small.      I would get the report and  wait for 6 mos or so and then do audiogram again and then maybe see if MRI is felt is is needed as ins  will balk at doing them without a reason.            You have to specify IAC with the MRI and not just brain.                           You might also see if you can see a neurotologist or neurosurgeon later there too.                Many ENTs don't really understand these.           Someone who sees MRIs with them regularly has more knowledge.                Good luck with this.          It could be also you just happen to have the symptoms but isn't one.  The whole AN business can be tricky.                            Cheryl R

[sgerrard]

I think JoeBloggs on this forum, who had an AN, has a mother with similar symptoms who doesn't have an AN. If anything runs in the family (other than NF2), it would be a weakness in the ear nerve area that sometimes results in an AN, sometimes in Meniere's disease, and sometimes in no particular diagnosis.

I would continue to get periodic hearing tests, to see if anything is changing. A significant change might prompt another MRI. If it is any consolation, AN surgery does not usually fix tinnitus, so that is something you get to deal with anyway. I have grown accustomed to my cricket chorus.

Best wishes,

Steve

[Sue Vogel]

Well, my experience is different than the others.  My original MRI (more than four years prior to my actual diagnosis) came back with the report that my brain was "abnormally normal."  Those were the words used to describe it to me.  I continued to experience symptoms for those four years and was told I had Meniere's Disease.

My surgeon viewed my original MRI along with the current MRI (at the time of diagnosis) and said, "Oh, yes, there it is," and pointed out the tumor in the original MRI to my husband and I.  It was difficult to recognize compared to the large, walnut sized tumor in the current MRI.  According to my surgeon who is very accomplished in his field, it was there all along.

I would have someone else look at it.  Mistakes do happen.

SUE

[mt15]

Thanks, all, for the responses.  I have a noticeable difference now between my right ear and left ear, where I couldn't have told you six months ago that there was any difference, even though the audiologist noted a slight difference at that time.  Maybe my sister's doctor will take a look at the MRI.  Appreciate being able to gather a few opinions on this issue.  Good luck, everyone.

[suboo73]

Hi mt15!

I am here because my sister was diagnosed with an AN before me. [last summer.]
She described symptoms like mine, but her ENT sent her for an MRI right away and she had answers in maybe a month or so.
I have had the same type symptoms for 12+ years, and 2 local ENTS dismissed the inconclusive audiograms and told me i was just getting 'older.' (i am 53 now)

Although it is very possible that you do not have an AN, i don't think it would hurt to have another doc look at the MRI, one with lots of experience in ANs.
As Cheryl suggests, maybe more pics are needed that are more specific to that area of the IAC.
Then continue with follow-up periodic testing to see what, if anything is happening and how you can maybe get some relief from your symptoms.

Best wishes in finding the answers you need. 
My thoughts and prayers are with you and your extended family.
I hope your sister and her son are doing well after their surgeries.

Sincerely,
Sue