Perhaps AN

[mel07]

Hi all
I've been reading these forums for a few weeks now, while I try to psych myself into actually seeing an ENT. And I really want to say I'm TOTALLY blown away by the level of support and warmth on offer here.
I have been reluctant to post anything, because I have no diagnosis.  However, I do have  a couple of the "hallmark" symptoms - gradual hearing loss in my left ear, and tinnitus. The tinnitus developed - or maybe I just became aware of it - about two months ago. The hearing loss is is more long-standing, about four years I think. I wasn't too concerned when I first noticed it; in fact it was helpful in getting to sleep with a teen in the house. But now that I have the tinnitus (and Google), well, I'm worried.
Initially I thought it may be wax build-up. But a round of drops did not fix the problem and I heard no fizzing when I used them. So I don't believe it's a conductive problem. I know that an MRI with contrast is the only way to determine this, so I'm not even sure why I'm posting. i guess I'm looking for validation or reassurance. I tried to talk to my husband about this, and he laughed it off as hypochondria.
Mel

[CHD63]

Mel .....

First of all, welcome to this forum and secondly, you are not a hypochondriac .....  you have valid, concerning symptoms.  As you already know, an MRI with contrast is the only positive way to diagnose an AN.  I would urge you to make an appointment with an ENT and ask for an MRI with contrast.  If nothing else, it will put your mind at ease if it turns out not to be an AN.  If it is an AN, you want to know it so you can choose an appropriate action (or inaction by waiting and watching).

Best thoughts and do let us know how you are doing.

Clarice

[mel07]

Thank you for your immediate response, Clarice. 

I am about to fly home to Australia (from the US) in two days. I really want this to be a positive trip, because my stepfather has cancer. I haven't been home in five years, and I don't want this to be about me. I guess that's the main reason I have held off. Fear is the other. From what I have read, my symptoms are very specific to AN, but not that sensitive. That is, it COULD be something else.

[Kaybo]

Mel~
Hello and welcome...let's hope that you do not have to join this group as an official ANer, but you are MORE than welcome, whether you have an AN or not!  We will be support for you though out your process of trying to find out WHAT is wrong with you.  Whether you have an AN or not, something is not right or you would not be searching for answers.  It may be that your hubby is SCARED TO DEATH too and this is his way of dealing with it - even though that is hurtful to you at this time.  I would encourage you to schedule that appointment and get this show on the road so that you can get some answers & feel better "knowing" what is really wrong.  Feel free to use us as a sounding board to ask any question!  In the meantime, TRY to enjoy your holidays, these are usually VERY slow growing and not life threatening any way - if it is there, it is there and there is not a lot you can do about it in the short term (a week).   If it is an AN, it more than likely has been there for a while already & you just didn't know it!  PEACE to you as you struggle with this...

K  

[mel07]

Kaybo, hi

Of course you are right. Knowing is the best thing right now, but unfortunately it's also not an option. No time to get an MRI before I leave. (I could, however, get in done in OZ. Then it would be free. - I'll save my vitriol for the US medical system for a later post.)
A few things I've noticed about myself from researching this condition are not pleasant. I am more concerned with facial paralysis, for example, than hearing loss. Weird.

[Kaybo]

I think 99.9% of the people on here would say they were more concerned with facial paralysis than hearing loss...don't feel bad about that - that is human nature!  And really, that is probably how it should be...you have another ear (spoken by a person that has been SSD - single sided deafness - for 14 years) & there are many options out there to help with that, BUT your face is an expression of your soul and everyone sees it everyday!  Does life go on if you do have facial issues?  YES!!!!  But it is still not wrong to be more concerned about the face!
Please enjoy your trip and try not to worry too much about this - why waste a lot of unnecessary energy over something that you don't know about for sure?

K   

[Pooter]

Mel,

Welcome to our neck of the internet woods.  I think regardless of whether your husband thinks it's hypochondria or whoever else, you should get an MRI with contrast.  Tinnitus and hearing problems can be attributed to MANY things other than an AN, and I hope that in your case it is something else treatable.  But, do know that we'll all be here to help answer questions about treatment, symptoms, etc... if it turns out to be an AN or not. 

You shouldn't just pass it off as something else, you should get the MRI to be sure.  Like you, had had tinnitus and sudden loss of hearing and I chalked it up to wax or something.  Looking back, there were so many "hallmark signs" over the years but each were attributed to something else.  For example, that last year before diagnosis, I had 4 sinus infections... chalked that up to it just being a crazy year of weather making my lifelong sinus problems act up (ironically, since surgery, I've had very minimal sinus issues and not one sinus infection).  My wife complained of my not hearing her as well and I sluffed it off.  Little did I know but at the time of diagnosis I had a 3cm AN growing and putting pressure on my brainstem.  After awhile, many things started adding up..

I say that not to scare you, but to let you know that you shouldn't just sluff it off and chalk this up to something else.  You have a way to know for sure if it's an AN..  Do it.

Welcome to the forum..

Regards,
Brian

[mel07]

Brian, yep. Lots of "red flags". I don't drive, and have found myself increasingly saying "What?" when in the car. I am a leftie, and have recently swapped ears when on the phone. This morning, my husband had the clothes dryer going (yes, he's one of those hubbies, bless him) and i realised I could only here on the right.

I have some serious vision problems also. My one consolation over the years was my ears were OK. Drat.

[mel07]

wish you would help me

[Pooter]

wish you would help me

Help you with what, Mel?

Regards,
Brian

[Jim Scott]

Hi, Mel ~

Welcome - and thanks for taking the time to post.  No need to be reticent about posting because you don't have a diagnosis, we're not that exclusive!

You're right about your symptoms possibly being caused by something other than an acoustic neuroma.  However, as you know, only an MRI with contrast can determine that with any certainty.  I'm sorry about your loss of your stepfather to cancer and I admire your determination not to make your visit home 'all about you'.  However, upon your return to the U.S., I would hope you'll surmount your fears - which are normal and natural - and call the ENT physician to ask for an MRI referral.  If the MRI scan shows no AN present, perhaps the cause for your symptoms will be found.  In any case, I think you realize that doing nothing is not a realistic option.    Fortunately both surgery and radiation techniques to treat an acoustic neuroma have notably improved over the years and the odds of you coming through either one successfully are quite good.  

I trust that you know (from your research) that 99.9% of acoustic neuromas are benign and eminently treatable.  I hope that you also know that the folks here - including me - stand ready to advise, commiserate and support you in whatever you chose to do concerning a possible AN.   Meanwhile, we wish you a happy holiday and a safe trip to and from Australia, where the temperatures are well into the 80's these days  

Jim

[mel07]

Hi Jim
Yes, it will be very warm in Australia right now! I posted a reply, but it appears not to have taken.   
I hope that you don't feel I am the shallow person I suspect myself of being.

[pjb]

I also agree you should definitely get an MRI if it is an AN they are mostly slow growing but the sooner you find out the quicker you can research it and make a decision but I am hoping that it is nothing please keep us posted.

Regards,

Pat

[HeadCase2]

Mel,
  I understand the thoughts you may be having, since you're considering that you may have an AN.  Statistics would say that you most likely have some other condition causing your symptoms, AN is fairly rare.  I'll also point out that hearing loss on the AN side due to AN is usually sudden, rather than gradual.  I hope you can get in to see an ENT soon to have it checked out.
  If you end up having AN, the forum has some folks from Australia (LAZ for one), who you can contact for information about treatment there.
Regards,
  Rob

[JerseyGirl2]

   I'll also point out that hearing loss on the AN side due to AN is usually sudden, rather than gradual. 

Hmmm. I think quite a few of us would say that our hearing loss was gradual rather than sudden. Gradual hearing loss -- over a very long time -- was my only symptom and I went to the otolaryngologist expecting him to tell me I needed a hearing aid.

Catherine (JerseyGirl 2)