Not sure if my hearing changes are AN related or not???

[Jenifr36]

Last summer I noticed a big difference in the hearing in my right ear.  I scheduled a hearing test and the doctor confirmed a significant loss in the right ear, minimal loss in the left.  We talked at that time about the possibility of AN but decided it was too early to be concerned.  I have been a volunteer firefighter and first responder for years, worked fire rescue at the local racetrack and have been an emergency dispatcher wearing my headset on the right side.  And let's be honest, I'm 44 years old!!! 

I was fitted with a hearing aid in my right ear in mid-august.  It was amazing the amount of things I could hear again.  Then while I was sitting at work on October 31st, my right ear went totally dead.  I really thought my hearing aid died.  I changed the batteries and tried all kinds of things and still couldn't hear.  I called the doctor right away, and he started a prednisone burst.  Within 6 days the hearing had returned to normal.  But he wanted to get the MRI just to eliminate the AN.  Well, that didn't work out very well.  Since my local hospital isn't equipped to deal with these, I was sent 2 hours away to meet with the doctors and surgeons there.  I have a very small AN, and we all agreed that watch and wait was the best course of action. 

So since that has been our decision, I have had to go on the prednisone burst again for muffled hearing, vertigo and headaches.  My biggest question in all this is, am I overanalyzing my symptoms, or being cautious.  I've had vertigo before.  Not exactly like this, it was after a concussion, but still it's not crazy to think that I might have a touch of vertigo now and then.  Headaches are pretty common for me too, after 5 concussions, trust me, headaches aren't new.  But when you add all this together, does it mean that I am having increased issues, or am I being a drama queen???

My husband thinks that once we made the decision to watch and wait, I should stop thinking about it or worrying about it.  Maybe he's right, but unfortunately I don't have an on/off switch to make that happen.  I'm just so used to being able to fix things and the waiting and not being able to do anything is driving me a tad bit crazy. 

I guess what I'm trying to say is that I feel overwhelmed.  I want to feel better about what I'm facing and I want to understand the emotions that are coursing through me right now.  And it's hard for friends and family to help me because they don't have this thing in their head. 

Anyway, if you've gotten this far, thanks for reading.  I appreciate even having a place to pour out my feelings.  Thanks again all.

Jennifer G.
Mindoro, WI

[CHD63]

Hi Jennifer and welcome to this forum .....

Although none of us are doctors on this forum, we have a great deal of experience within the active group.  Be sure to check out all of the wonderful resources on the anausa.org web site and send for the free informational packet.

No, you are definitely not being a drama queen!!!  Depending upon the exact location of your AN, even a small one can create all kinds of very unpleasant symptoms.  If your symptoms are greatly interfering with your daily life, you might need to re-think the wait and watch plan.

In the meantime, you can always send a copy of your MRI to several of the known expert physicians who treat many acoustic neuromas for additional opinions.  Since ANs are relatively rare, you really want opinions from experts in the specific field of treating acoustic neuromas.

Thoughts and prayers.  Clarice

[ANGuy]

You're not a drama queen.

Your symptoms are very much like mine.  Mine have been coming and going for at least 8 years and I attributed it to my spending nearly every waking moment of my life operating noisy equipment, shooting guns, sirens, turning my portable radio up loud to hear it in noisy bars etc. and age.

Your good ear is an indication of your life experiences, your bad ear is an indication of your AN's presence.  As for second guessing your WW decision, we are in the same boat there too.  When my tinnitus acts up, or my hearing goes down, I wonder if I'm doing the right thing by waiting.  But, the loss of hearing in my AN ear is a virtual certainty regardless of what I do.  The loss of balance function in my AN ear is a certain no matter what I do.  While intuitively we would think by acting "now" we might save certain functions, it's not that simple.  There are different opinions on this from researchers, practitioners, and patients.  I have met with two different experts who are leaders in this field, who work in the same facility, who perform these surgeries as a team, who completely contradicted each other in terms of prognosis.  The reason for this is that there is no "right" answer.

I think you should weigh the pros and cons of WW, but that the current status of your symptoms probably should not be a big factor in your decision making.

[Jenifr36]

Thanks everyone for the replies.  I'm just sick of dealing with the prednisone bursts and all that.  The hearing aid adjustments are a pain.  I never seem to get the setting right and it's either too loud in my day to day life but too quiet in my work life, or vice versa.  I really wish I knew what to think.  I guess having this personality that always fixes problems, is causing me to want to fix this and move on.  Oh well.  I guess the next few months will be interesting.

thanks again everyone.  Just having someone here who understands helps a ton. 

Jennifer G.
Mindoro, WI

[ANGuy]

Prednisone sucks.  I took it a few years ago for an acute allergic swelling of my uvula for I think a week and I hated it.  That was before I knew I had an AN, so if I end up taking it for AN symptoms, I might be more willing to put up with it's side-effects.

As for not liking the hearing aid, I have no personal experience with them.  My father tried them for typical age-related hearing loss and hated them.  His complaints were similar to yours, the volume was never right, they seemed to boost things he didn't need boosted and yet he still couldn't understand speech etc.  That was 20 years ago and I think they are much better now.  I am also sure that the older technology ones are still around.  I don't know which ones are best or how to tune the best ones to work well and I don't know what the limitations of even the best ones are.  I think it is possible with the right hearing aids, set up properly, you may be able to find something workable.  I would try to address the hearing aid issue specifically in a thread because there are so many members that are truly expert in all things hearing aid related in this forum.  There is a very good chance they could help you find a workable hearing aid solution.

[Dee-dee]

Why not just get an MRI with and without contrast?  Then you will know where you stand.  I would not postpone getting an MRI.  All the best.
D

[ANGuy]

She did get an MRI and she does have an AN.  She wants to know if the symptoms are from the AN or possibly something else.

[Jenifr36]

Sorry for the confusion.  Yes, I do have a confirmed AN in my right ear.  What I'm not sure of is whether or not the symptoms that I have been having, vertigo, headaches, intermittent hearing loss, are because of the AN or something else.  I don't want to jump to the conclusion that it is because of the AN, because let's face it, I've had too many concussions to rule that out as a cause.  But because the symptoms seem to be happening right after my diagnosis, I'm not sure what to think.

The paranoia is alive and well in my mind.  My husband keeps telling me I am overreacting.  My boss tells me that we'll find ways to work around my hearing loss.  My doctors keep telling me to watch and wait.  GRRR.  It's all making me very crabby. 

Thanks very much for listening though.  It helps a lot to have a place to unload and ask questions without judgement and without having to hear about how it can't be that bad.  Or that I'm making more if than there needs to be.  I guess I keep thinking that I have this thing in my head and it must be causing something to happen, or else we wouldn't even need to watch it. 

Anyway, thanks again all.

Jennifer G.
Mindoro, WI