Possible AN?

[debbie]

Hello Everyone,

My history, 45 year old female.  I had sudden hearing loss in my left ear approximately 10 years ago.  Really sudden, became dizzy watching TV with hubby and thought I was coming down with something so went to bed.  Completely off balance in the morning so called into work, had the phone to my left ear, thought my phone wasn't working as I could not hear our receptionist.  Tried calling back this time phone to my right ear and I could hear her. Told her what was going on and made an appointment with my GP.  He looked in my ears, used that metal fork thingy and told me I had an inner ear infection, there was no medication to help me that it had to run its course and that my hearing should come back.  It never did and now 10 years later still cannot hear out of that ear.  He never sent me to an ENT.  I didn't know so never questioned anything and just adjusted to having only one working ear.

Throughout the years have had episodes of dizziness, light headiness, etc. etc.  Last year the dizziness became worse went to doc, he has mentioned labryintitus.  About 3 months ago the dizziness (I say dizziness but it is not a spinny feeling, more like severally light headed) was even more intense, started having super wicked headaches especially in the morning, I have a funny feeling down the left side of my face from my eye, along the ear down to my jaw, head and ear pressure is so strong, I have pulsating heartbeat now in my ear for about 3 weeks, extremely tired absolutely no energy at all.  Also about 3 weeks ago I started having sharp jabbing pains in my left ear, they only last for a few seconds but sometimes they are pretty severe.  Get really weird head sensations also like creepy crawlys in my hair, and I hate spiders..lol

I have been off work now since April 16th, I can't concentrate at all.  Anything that I have to solve or think through just send me on a whirl wind.  My GP was hesitant in putting me off, but then again he was never good with women.  Always puts everything off to stress.  It was when he filled out my short term disability forms for work that I noticed the word labryintus 3 times, you know he has never ever once mentioned this word to me nor ever prescribed medication for this, last entry he has for that is Sept 05 and than he told me to take multi vitamins.

I have finally convinced him to send me for an MRI which I go for on May 6th.  I beleive there is a great possibility that I could have one given my history.  And than again maybe not, just wanted to throw that out to you all to get your thoughts.

Deb 

[ppearl214]

Hi Debbie and welcome.  The only true way to confirm if you have an AN is to have an MRI with contrast (constrast will really pick it up, should you have one).  Please keep us updated on how your MRI goes.... make sure you request a copy of the films AND written report.  They can burn the films onto CD if you want.

Hang in there and please keep us posted.

Phyllis

[krbonner]

Hi, Deb!

I'm so sorry you've had to put up with this for so long without any answers! 

Phyl's right - the only way to definitively diagnose an AN is via MRI with contrast.  Mine always take about 45ish minutes.  Afterwards, get copies of the films and the written report.  If you do have an AN, you'll want to bring those with you to see a specialist who has lots of experience with ANs.  Where are you located?  Maybe someone here can help direct you to an appropriate specialist in your area.

Good luck!
Katie

[Windsong]

Dear Debbie,

First I'd like to say welcome.
I am so sorry you have had a hearing loss and have had to cope with all the rest of the symptoms for such a long time. I confess I am shocked that you were not sent to an ENT or even a neurotologist. It's inconceivable to me that with an acute attack of labyrinthitis causing a sudden hearing loss that you wouldn't have been sent on for a cpmplete evaluation by a specialist.

There are a number of possible cauases for sudden hearing loss and an ENT would be best equipped to begin an evaulation and then if he couldn't have an asnwer and you still had symptoms then a neurotologist would be the next to try to figure things out. Sometimes, yes, the cause might not be determined but at least a better guess would be there.

I am very glad you now have an MRI scheduled and hopefully it won't be an An. When is the mri? Soon? You might think about asking for a referral to a specialist in any case. You have enough symptoms warranting a more detailed assessment and tests. If you google sudden hearing loss you'll be sure to find some sites which outline the tests that are done. Maybe you already have. I mean to get to the point where your daily life is affected and to have it intrude on your ability to work is enough of a red flag to me. Something is going on...

So is this doc of yours a misogynist or something?  I can't believe he didn't send you on for a diagnosis. An ear infection and no treatment? Did he at least say it was viral then? My gawd. That makes me shudder that someone could say gee you lost all your hearing go live with it or you must be stressed for these other symptoms.....Am sooo glad you are now being proactive in looking for an answer!! Good for you!

Sending you loads of best wishes.
Windsong

[johnsli]

Hi Debbie,

I understand exactly how you feel.  I was only fighting this for a year and a half.  My doctor said that the shooting pains were stress related.  My hearing loss was from water behind my eardrum.  I need to practice nasal cleansing.  The whole nine yards.
I asked the office if I needed a referrel for a specialist, and they said no.  So, I went to an ENT, he did a hearing test and an ABR and also scheduled an MRI.  Within a week I was diagnosed.  My GP was trying to justify his treatment, but, that didn't make me feel any better.  The ENT said he was only doing the MRI to make sure it was not anything, unfortunately it was and he was very upset about it.  He is such a nice man, and he is older than dirt.  If it weren't for my husband and my best friend Carol, I would probably still be wondering what was wrong.  They kept bugging me to go to another doctor which I did.  The best thing that you did, was to get on this forum..   They are great people, very helpful and caring.  I hope for you that it is not an AN, but, in the event that it is you are in a good place.

LOL
Laura

[Jim Scott]

It amazes me the suffering people have to tolerate at the hands of physicians who seem oblivious to their problems and/or dismiss them as 'stress'.  I think that this kind of attitude on the part of some doctors severely diminishes the profession.  No wonder physicians get sued!  Of course, they're not all insensitive to their patients complains and suffering - but too many are.

Debbie, I regret you had to endure a 10-year bout with your hearing loss and the other symptoms you listed while your doctors dithered and mis-diagnosed.  Sadly, it's not that unusual.  Of course, your upcoming MRI scan will tell whether you have an acoustic neuroma (or whatever) and you can deal with it once you have that information.  Too bad it took so long to get to this point.

I wish you all the best.

Jim

[ceeceek]

Hi Debbie,
Hang in there, afterall you have been waiting for a long time for correct diagnosis...may be nothing , could be AN..but remember these are really really slow growing and perfectly treatable with a variety of options..so even if it is an AN,,it is not the end of the planet..sorry you are suffering ,,that is the worse part....and hopefully once you get it treated you will feel better...
Ceeceek

[Joef]

an MRI with contrast ...

and fyi ... most people that come on here wondering about tumors .. dont have any .. a MRI with contrast .. a 99.9999%  way of telling if you have a tumor...

[Featofclay]

Hi Deb,
First let me welcome you to the Club nobody wants to belong to and hope you get some answers soon to your problems. You are definitely on the right track now with the MRI scheduled.  If it does turn out to be an AN, it does not mean a death sentence as I first thought when I was diagnosed.  Mine was surgically removed and I am doing really well. 
Jean

[debbie]

Hi everyone, thanks so much for sharing your thoughts with me. I have been trying to stay off the net and just keep a journal of my daily mess..hahaha.  We leave tomorrow for Timmins as my MRI is on Sunday morning. Anxious but nervous also. Read alot of Ingy's posts so so much the same. By the way I am Canadian also, northerner.  Wish me luck and I will let you all know how it pans out.

Deb

[debbie]

Well everyone, I am back to square one. MRI done on May 6th came back normal (done without contrast). Actually when I got there and she started talking to me she said my doctor only ordered a brain scan, she decided to extend the MRI to the inner ear. So, I am back to square one still have all my symptoms not improving what so ever. So when I went to see my GP I said "OK so now what, we have to get me fixed!!". I am at my ends with him, he is refusing to send me to an ENT now!!, his exact words to me were.."Sometimes your mind makes you think other things are wrong with you" So now he's telling me I'm nuts!!!

I know its my ear and am not imagining these symptoms, so I am giving up on Northern Ontario and have sent an email to the Lockwood Clinic in T.O. Please cross your fingers for me that they agree to give me an appointment. Someone out there has to be able to help me find out what the heck is going on.

So, until I find out further I will leave all you wonderful people alone but want to thank you from the bottom of my heart for lending me your shoulders.

Deb   

[Windsong]

Deb, sorry you are back to sq one.....
If your gp is writing "labyrinthitis" down regarding your ear and you are still not better with his treatment now why on earth would he be not sending you to see at least an ENT?  I don't get it....
Surely he doesn't expect you to live with your symptoms with no answers? stress can cause things ya, but too many things are attributed to that ....
Contrast is a good choice for an mri as it  shows up things much better when searching..... and an ENt might have some better ideas... as i said all sorts of things can be affect the ear... it doesn't have to be an An necessarily.

Good luck with the clinic...
W.

[Betsy]

Debbie,

It's my understanding that AN's rarely show up on a MRI without contrast.  In fact, on my MRI it ONLY showed up after the dye was injected.  Windsong is right; it may not be an AN.  Trust your instinct and keep pushing.

Good luck,

Betsy

[BeJoi]

Hi Debbie,

I've read your thread and really want to reiterate that you need to get an MRI with contrast.  Please take it upon yourself to see an ENT and get the right MRI done.  I was fortunate in that my GP pushed me to see the ENT and the ENT pushed me to get the MRI with contrast.  I'm glad I did, because it was the contrast that showed the tumor and nothing else would have located it.  You may not have an AN, but you won't know that until the right tests are done.

It's very important to be proactive with your physicians.  They are not gods, and they usually only know what they've been trained to know and what they've experienced.  You're the only one who can make sure you get what you need. 

Good luck with your journey.

Beverly