Shocked and scared

[AlliKC]

I went for a hearing test this am--my friends have been bugging me about my hearing for a long time.  I honestly thought my hearing was okay and I just had an attention issue. But the last month or two it has gotten progressively worse and every so often I will have odd ringing in my right ear and that odd sensation you get when you are in an airplane and you have to blow you nose to unplug your ears. I do think I remember having some random facial pains but now I don't know if that's because I read that about AN.  I have odd dizzy spells, too-even when I am just sitting around doing nothing.

When I told the Audiologist my symptoms, I could tell she was concerned but I had no clue why. I really thought she was either going to tell me I had excessive ear wax or I was fine and should be checked for ADHD instead.

What she told me was I have moderate to severe hearing loss in both ears and would need to have hearing aids.  That was hard enough to hear at the age of 42 but I can live with that. The she went on to tell me I need to come back next week and see the MD because my hearing loss in the right ear is quite a bit more than the left.

She casually mentioned it might be a tumor on the ear--I am not sure if she said AN because I was not quite grasping what she was telling me.  But she said with the difference in hearing loss and my symptoms, they need to figure out what is going on. She mentioned an MRI and that if I have this tumor--I would likely need surgery.  She made it sound casual and no big deal but I knew better. She also did not discuss hearing aids because this issue needs to be dealt with first. She did tell me surgery could leave part of my face paralyzed--but that is very rare.

I have an appointment next week with the MD to see if he thinks I need further assessment or an MRI.

I have since done research and managed to completely freak myself out. An AN is a brain tumor and often requires BRAIN SURGERY. 

I just don't even know what to think or do right now.  Is it a good sign I have hearing loss in the other ear or does that make AN more likely??? I am so overwhelmed and scared right now.

[Jim Scott]

Hi, Alli and welcome. 

I'm sorry you find yourself in this situation.  Because we're not doctors we cannot credibly predict what will happen when you have the MRI scan.  Frankly, it seems pretty clear that the audiologist is concerned that you may have an acoustic neuroma and is being 'casual' about it because she doesn't want to frighten you (too late for that) and doesn't know that you actually have a tumor, she only suspects it.  The fact that your hearing has diminished more in one ear than another is often - but not a guarantee - that the loss is attributable to an acoustic neuroma.  The good news is that, IF the MRI shows an acoustic neuroma is present, they are almost always benign and treatable, either with microsurgery or non-invasive radiation.  It's not the end of the world but an obstacle that is surmountable.  Your fears are quite normal and we've all been there.  We're here to educate and support to the best of our ability as AN patients, using our personal experiences to help you.  Please let us know what the MRI scan indicates (if anything).  We care and want to help in whatever way we can.  Please allow us to do that.  Thanks.

Jim

[arizonajack]

I just don't even know what to think or do right now. 

My advice is to insist on an MRI with contrast ASAP and determine if you have one or don't.

[rupert]

There is no way for the doctor to know  that you have an AN.  I think she is putting too much of the cart before the horse.   Most doctors will run tests before they jump to conclusions.  There are too many things that can cause hearing loss.   Get the MRI first , then you and the doctor will have some better information going forward and you can talk over things at that point.  There is no reason to panic. If it is determined that there is a problem, education, information and support will prevail over panic. Much of which you will find on this forum.

[Echo]

Hi Alli,

First off take a deep breath and try to calm yourself.  I was diagnosed with my AN one year ago and felt the same fear and panic initially.  It's a normal reaction to the news you are hearing.  Until you have your MRI and meet with the specialist do your research, this is an excellent place to do that!  Understanding more about AN's will make it easier to discuss them when you meet with the specialist in the event they do determine you have one. 

In my case I have taken an entire year to learn about AN's and the various treatment options available for my specific situation.  Not everyone has to jump quickly into surgery.  Try not to worry until you truly know if you have an AN.

Take care, and let us know how things go.
Cathie

[AlliKC]

Thank you for the replies and encouragement.  I have been reading all weekend and there is a lot of information out there from very credible sources. It's so rare (or seems to be) that there is not a lot of "junk" info out there.  That's very helpful. But, the more I read, the more worried I get and now I understand why my audiologist is so concerned and recommending further tests.  I am glad she knows what's she's doing.  if I do have an AN, I want to know NOW.

I also know that just based on my hearing tests, and one side being much worse than the other, I want an MRI done, regardless if the MD thinks I should.  I know the audiologist thinks I should have one for sure but I guess the ENT needs to have the final say. Surely, he will schedule one for me.

I don't know what's going to happen and I hope like mad my hearing loss is caused by something else. I will tell you, I never realized how much I love my life the way it is and especially the sounds of it until Friday, May 10. I can hear my children arguing in the other room over a video game as I write this.  Usually, I would intervene to stop the arguing. Right now, I am just appreciating hearing their voices clearly. Well, somewhat clearly, I do have pretty bad hearing 

I just kick myself for not getting my hearing checked earlier.

[AlliKC]

I have another question (why do I think I might be writing that same line over the next few days???)

Since my hearing loss is in both ears, and there is no explanation, are there any statistics as to the possibility I have an AN in BOTH sides???

Like I said, the more I read, the more I find out, the more questions and fears I have 

[CHD63]

Hi AlliKC .....

As the others have said, you need to take a deep breath and stop reading all of the "what ifs" ..... OK, I will have to be honest, I had my own moment of panic, as well.

Truthfully, until you have that MRI with contrast for a definitive diagnosis (and insist on it when you go to the doctor this week), reading more right now will only increase your fear.

Regarding hearing loss in both ears and the possibility of ANs on both sides ..... that is very rare indeed.  There is a condition called Neurofibromatosis Type 2 (NF2), that is normally an inherited condition, in which patients can have bilateral ANs.  However, only around 5% of people with ANs are NF2.  Since ANs occur in only 1 or 2 per 100,000, 5% of those is a very, very tiny number.

Praying for peace for you until you have the MRI and have some answers.  Be sure to let us know.

Clarice

[AlliKC]

Thank you, I suppose I can move the fear of a double AN to the end of my panic list...for now.  There is no way I cannot worry about this until I have an MRI-I am a bit of a worrier and now I have something to really think about!  It's actually a little funny that I finally have something to sink my worry teeth into.  Well, it's only funny when I am not totally freaking out, of course.

I will definitely come back and let you know what the ENT tells me on Thursday. My husband agrees 100% that no matter what, I must have an MRI since the hearing test and my symptoms (which have not been bad or anything and it was really my overall hearing loss that promoted me to get a test) are too close to AN symptoms to not find out for sure.

I also found out from my husband that his ENT told him he was worried he might have throat cancer last year. I knew he was going to him for some issues but he never told me that little tidbit until now.  He said he knew I would have had a small panic attack, researched it and come up with a full treatment plan before he could have made his next appointment

[AlliKC]

Thanks again for answering all my questions.  My appointment with the ENT is tomorrow morning.  My husband is coming with me (the audiologist requested he be with me).  I was so overwhelmed by everything, I have no clue what I am doing tomorrow or if I am having another test of some kind.  Any thoughts on this?

I have been doing some more reading and actually found some data that helped me relax a bit. I saw a journal article that approximately 1-4% of those patients presenting with asymmetrical hearing loss are NOT from an AN...

I read that and then STOPPED reading 

So then I am just back to the fact that my hearing is bad and I need hearing aids--I can definitely live with that!

Thanks again for the help--I'll be back tomorrow.

[AlliKC]

No AN-my MRI was fine!  I posted a longer post in Inquires thread but was not sure if those who responded to my other posts viewed these are not.

Thank you so much for your care and concern and helping me not completely lose my mind