What else could it be?

[RAS]

This is a fabulous discussion board and an amazing place for AN information.  Thanks for letting me post.

This may seem like a strange place to ask this question, but I can't seem to get a good answer from my ENT and my MRI (with contrast ) is scheduled for December (I will be out of the country for the next month and opted to get it done upon my return).

I have read many, many posts but as many of you have watched this board longer than I have, is there another reasonable diagnosis for partial hearing loss in one ear, tinnitus, and that "full" feeling all in the same ear?  I started out at the ENT to diagnose the full feeling and tinnitus.  I left with an audiogram showing partial hearing loss, a diagnosis of a Eustachian tube dysfunction, and no explanation for the rest other than the chance for AN. A week later, a course of oral and nasal steroids, an appointment for an MRI, and no change other than a case of PANIC. 

I'm keeping my fingers crossed for some other diagnosis and have read several posts here that resulted in a negative MRI findings.  What are the chances that this is NOT an AN and something else?  I'm not looking for a definitive answer -- just something to distract my ideas that I will for sure be diagnosed.

Thank you!!

[HeadCase2]

Hello RAS,
  Another possibility for your symptoms is fluid buildup in the ear.  Usually for AN the hearing loss would be described as sudden.  AN is relatively rare.  So the chances of you being a tumor carrying member of our forum are quite slim.  Try not to dwell on it until you get the MRI with contrast results.  AN is slow growing (average growth is often quoted as 2 mm a year), and benign (non-cancerous).  So if you were to be diagnosed with AN, unless it was very large, it would not need to be treated on an emergency basis.  People on this forum report treatment dates months, or years, or never, after diagnosis. AN, while alarming, is not the end of the world.
  My advice would be to go find a margarita and try to relax until you find out for sure with the MRI.

[Joef]

Relax.... most people who come on here waiting for a MRI (and classic sym)..  end up they dont have a AN. it is kinda rare ... but if you do, you have come to the right place for help!

and if you dont,  you can hang ... we dont bite....           * well -- maybe Phyl * 

[RAS]

Thanks so much for your responses.  I feel awkwardly selfish, asking what it might NOT be in an environment where folks obviously are dealing with the actual effects.  Interestingly, the margarita is a great idea -- alcohol actually decreases the high frequency pitch in my ear.

Although my symptoms seem consistent with AN, I realize it could be quite a few things -- but the ENT went straight for the AN possibility while leaving everything else aside.  I realize AN is rare, but then why not:  "hey, let's treat you for X, Y, and/or Z and then let's go with the MRI"?  I'm usually a glass is half-full person, and do not want to pretend that I have something that you all are for sure dealing with.  I'm never sick, in good health, and middle-aged (is 42 middle age any more?) but have this strange thing going on in my ear and have the feeling that my luck has run out.

I belong to a number of discussion forums but this has to be the most thoughtful, informative, and supportive place I've ever set my cyber foot in.  I've read the posts where after people are cleared from the AN diagnosis they just disappear, so  I was never sure what else it could be to parallel the symptoms so closely.  I live just north of Denver so I've already done some research (thanks to posts here) about the treatment possibilities....  I guess I just listen to the tone and wait....  Any insights are very much appreciated.

[4cm in Pacific Northwest]

My understanding is that hearing loss in the higher frequencies is more common than in the lower frequencies for AN patients.

You would have to look at your hearing test to see if you fit the bill or not. My hope is not- but is sure nice to meet you and I’ll say a little prayer that you do not have an AN – even if the inhabitants on this forum are a great bunch …an eclectic mix of bizarrre pirates, sailors (some who get drunk on the wind  ), artists, sports fans … and heaven forbid -fisherman in a waterbottle. (Teasing Joef  )

Cheers,

4

[macintosh]

My ENT gave me the figure that 4-5% (not a typo--between 4 and 5 percent) of people who are MRIed to test for ANs actually turn out to have one. I guess the best reason to do an MRI early on is that it gives a clear answer.

[RAS]

Well, thanks.  That confirms some other things I've read.  Based on what I've been reading here, I moved up my MRI to this coming Friday (before I leave the country).  Not knowing is just as anxiety-provoking as a confirmation of AN.  So, I moved it ahead a month.  All of you have been great -- even just the few posts along this thread.  How many choose meds for the MRI?  I've had a MRI for C-spine and did okay....  Should I go with the drugs?  I could go either way....  I am not too concerned about claustrophobia nor do I want to put myself through 45 minutes of sitting in a tube wide awake.  What say ye?

Again, thanks so much.

Rob

[HeadCase2]

RAS,
  Everyone is a bit different in their reaction to the MRI.  Mine usually take about 45 minutes.  And I actually find the weird noises the MRI machine makes to be entertaining, kind of like a science fiction band.
  You can usually request a copy of your MRI, which would be given to you on a CD.  And the CD has it's own viewer program.  And you can also request a copy of the radiologist's report about the MRI results.  The neurologist or ENT doctor that you are seeing may have slightly different take on the MRi results, since they may see MRI's of AN more often than the radiologist.   The radiology report is written in "medicalese", so WIKI definitions are helpful in reading it.
  Here's hoping for a boring radiology report. "Unremarkable" is a good word to see on the report.
Regards,
 Rob

[lori67]

The MRI seemed to go pretty quickly for me, so I didn't need any meds.  Besides, I have 4 kids and that was the first time in years I got to lie down uninterrupted for 45 minutes.  I'm actually looking forward to my one year post op MRI.

But I'd say, whatever makes it more bearable for you is the way to go.  Did I hear mention of Margaritas?  Maybe you can order one of those before the test starts.

Either way, good luck to you!

[Joef]

I think they (Dr's) like to get the MRI done first thing .. it easy for them ... it normaly discounts a tumor and they can look at other sym ....

My GP sent me right away to get a MRI ... and even sent a note , which he did not tell me! ("look for a AN") ... I was only the 2nd person he has seen with a AN .. arn't I lucky?  ...

I knew something was wrong after the MRI ... they are not allowed to say anything ... but he saw the pool ball in my head and treated me strangely afterwards... telling me a can sit and rest before I leave as long as I wanted .... now remember -- I just rested for 45 min!!!... I almost fell asleep ... 

[krbonner]

I've always found that the 45 mins in the MRI machine passes much more quickly than I think it will.  It helps that they usually play music at you through the machine.  As Lori said, I take a bizarre enjoyment in being able to lie down uninterrupted for that long!   

Just make sure the MRI is with contrast (sometimes ANs are visible without contrast, but they shine bright white with it), and that they give you earplugs.  Those machines can be awfully noisy and you don't want to damage the hearing you have left!

Good luck, and let us know what you find out.

Katie

[RAS]

Thanks to everyone for the advice and for getting back to my thread so quickly.  I'm scheduled for Friday at 2:45 for MRI with contrast (they tell me "with and without" when I called).  No meds for me I guess.  I recall when I had my C-spine done that it was just hard to stay perfectly still -- swallowing, breathing all seemed to be exaggerated inside that tube. The doc has been good about getting right back with results.  So, perhaps on Monday I'll know something one way or another.  I have no idea how many of these he has seen (the ENT, that is) but I'll soon find out....  I'll spend the weekend with my fingers crossed.  I will be sure to let you know what my results are....  Thank you so much.

Rob

[Obita]

Hi RAS and welcome!

Good for you, getting the MRI thing over.  I don't think you will regret the no drug thing for the MRI.  It is a piece of cake.  They talk to you etc....and let you know how long the next set of films will be.  You don't need to be still for more than 6 or 7 min. for the longest set.  Some of them are as short as 3 min.  Then, half way through, they slide you out to get the contrast injection.  They want your head to stay in the same position but you can move your arms, legs and even scratch your nose if you want to between the films.

Nice to have you on but I hope you can leave again.  JodieK just found out that she does not have an AN and she was sure she did.

Good luck, Kathy

[Jim Scott]

Hi, RAZ:

I hope the MRI results are negative for an acoustic neuroma. 

As you know by now, the set-up for an MRI head scan keeps your head very rigid but the time usually passes quickly.  If you were at all claustrophobic, it would have been a problem, so I trust you were not.  Awaiting the results, right along with you.

Jim

[RAS]

MRI is complete, but no results yet.  It's almost noon Mountain time on Monday and I haven't heard yet from the doc.  Keeping my fingers crossed.  It's tough not to jump out of my skin anytime I think my phone rings.  This could be a life-changing day....

As everyone said, the MRI was not tough.  About forty minutes -- the first thirty or so were images without contrast.  And, on schedule, they slid me out and pushed in the contrast -- then slid me back in for another ten or so minutes.  A slick little mirror device was used so that if I had my eyes open I was looking at the open room.  Totally made it feel like I was not inside a tube.  Very, very clever.  Modern technology and the cleverness of people never ceases to amaze me. 

Like a lot of you, I started a blog of the experience.  It seems cathartic.  I'll post here one way or another with the results.  Thanks again to all of you for the wonderful support.  Waiting here with a strange sense of dreary anticipation (and that high-pitched screech in my ear...).  -- RAS