How everyone find out they had an AN?

[EriKatLyn]

 Hello!  I am a "newbie" to this site.  I've been having what all the sites list as "typical" symptoms of an AN, I am in the process of getting an MRI done.  I was just curious how everyone discovered their AN and what their journey has been.


-Erin

[Gennysmom]

Welcome EriKatLyn!

I turned 40 this year and had to have my first mammogram.  While I was at it, I decided to go have a hearing test just to see how much hearing I had lost from damage to my ear from all the concerts I went to when I was younger.  I didn't want a hearing aid yet, but wanted to know just how protective I should be of the hearing I had left.  I got sent to the ENT and for a MRI just to "rule things out" and I can't believe I was actually joking about making sure there was "nothing growing in my head".  Surprize, surprize.  I've had hearing loss for 10+ years and tinnitus since my rock concert days.  Now I'm looking at surgery for something I had no idea would be there.  Crazy where life leads you.

Please ask us anything...there are a lot of pre-procedure and post-procedure folk on here.  There are lots of options depending on size and location and opinions and experiences abound. 

When is your MRI scheduled?  Does your doctor think you may have an AN as well?

[EriKatLyn]

Well I've had my symptoms for about a year and a half.  They've gotten worse in the past two months (?), I've been in and out of the Dr. office (well I am actually treated by a nurse practitioner).  We thought maybe it was low blood sugar- was watched and treated for that, nothing got better.  Thought maybe it was migraines, again treated and no improvement, thought it was allergies, again same thing, never any improvement.  I had a spell three weeks ago where I was basically bed ridded because of dizziness/vertigo and vomiting, and after that I'd had enough.  At this point I should say that my NP (nurse practitioner) really hasn't been that helpful. I've basically been fumbling trying to find reasons for my symptoms hence all the random things above (migraines, hypoglycemia...), so I went in and demanded that I go to an Audiologist.  I have my BS in Speech Therapy so I've taken several Audiology courses, and I thought that maybe this was an inner ear problem ( I don't know why I didn't think of something like that sooner), but I went in and I have mild hearing loss in the high frequencies in both ears, with the left being significantly worse. I had my hearing tested in Dec 04 in my college clinic and everything was fine then.  At that point my AuD asked if I had ever had an MRI, no, and he mentioned that he thought it could be Meinure's Disease, or there was a small chance it could be a tumor.  He sent me to an ENT, that was the worst experience of my life.  I walked in and the ENT asked "why I thought I should be there" and so I told him about my symptoms and how I thought it was an inner ear problem, and the ENT laughed and said "so why do you think you need my [/i help? So then I proceeded to tell him that my NP and my AuD both thought it might be inner ear and they wanted some balance tests and a vestibular work up done, to which he responded "well they aren't real doctors so how would they know".  I turned red, and I was just baffled.  Here I was hoping and praying that the ENT would be able to find something and at least I would know why I was having my symptoms, and he was basically telling me that there was no basis for my symptoms and he also mentioned that he thought it was " in my head", psycho somatic.  I got so frustrated I raised my voice and said "well what can you do for me?".  He then took his otoscope look in my ear, said the ear drums were fine, there was no fluid. Then he added that it was either psychosomatic (which I am almost certain it is not) or a tumor, and with that he got up and left the office.  I was so frustrated I just started crying.  I went back to my NP's office and told them that I wanted an MRI, and then said that my NP wouldn't schedule one until she got the "report" from the ENT. That was on Tuesday.

I have no idea if I have an AN, my symptoms are the "typical symptoms" but I am getting no support from any of the medical staff so I am at a loss.  The only reason I even know what an AN is, is because I typed my symptoms into webmd and AN came up.  I think I am getting ahead of myself, but I feel like no one else is being proactive so I have to be.  There is some reason that I have a new hearing loss and tinnitus, I'm only 24, it's not typical, and the vertigo and dizziness.  It's gotten so bad that I have to take a meclizine before I drive anywhere. I NEVER used to get sick when driving a car.

Well I've written a book here, guess I was venting a little bit, but it's just so frustrating.

Thanks for the reply!
-Erin

[cookiesecond]

Hi Erin,
Feel free to vent anytime.I was misdiagnosed for many years with vertigo, possible migraines etc. I was told a cat scan had ruled out anything major so I just put things on the back burner. I did have significant hearing loss and bouts of vertigo. At times I was scared of finding out.
Then.. I was rearended in a car acident and ended up with neck/back injuries. While doing a MRI of my neck they found the tumor. I was sent to a neurologist, then an ENT and then a neurotologist.The neurotologist along with a neurosurgeon removed a 3+cm An with the translab approach 8-2-05. The surgery was 8 hours and the tumor was wrapped around my facial nerve but I have no facial damage. I did lose the rest of my hearing on my an side and am still dealing with a few balance issues. I feel if I did not have the previous injuries I would be farther along the road to recovery.
I know this is a scary time but try to remain positive. There are many of us with great outcomes. There are also a lot of great people here for support and answers. We will add you to our prayer list.
Take care and keep us posted,
Lynn

[Crazycat]

Erin,

     It's good that you're having the MRI done be because it will tell you what you need to know. You can take things from there. I suffered for years with double vision, increasing deafness in my left ear and then, really bad equilibrium problems before I was able to get an MRI.
I'd see various doctors including chiropractors and audiologists hoping to find a solution. All the doctors would tell me the same thing: "Get an MRI", it's the only test that will really shed light on what is going on in there. When I finally did get one, the phone was ringing off the hook the next day when the results came in. The next day, I was hooked up with one of the best neurosurgeons in the world at Mass General in Boston. Things can work that fast when you make the right moves.

                   Take care, Paul

[Dave_S121]

Hi Erin, I'm a police detective.  In spring of 2002 I noticed sudden hearing loss in my right ear after a firearm was discharged close to my right ear in a trainging accident.  My ENT thought the hearing loss was due to the accident.  2 years later in spring 2004 I noticed balance problems which I mentioned to my audiologist during a check-up.  My hearing in my right ear had also gone from 50% to 15%.  My ENT sent me for a MRI and on July 1st 2004 I was told I had a 2.2cm AN.  Successful surgery was on October 20th 2004 at Hinsdale Hospital, HInsdale, IL.

Thats my story and I'm sticking to it, lol.

Good luck in your journey.  You have found a wonderful site with everyone more than willing to help and share their experiences in the hope that it will help. 

Dave Skaja

[DeniseSmith]

I had been having symptoms for a few years and had excuses for all of them.  I started losing my hearing and laughed it off to age.  Then my boyfriend had a snowmobile accident, and had to have surgery, so while at the hospital for him, they asked him if he had any problems with acid reflux, he said I don't but she does and pointed to me.    So I basically was guilted into going to the dr. for my acid reflux problems, and while there mentioned that I had some hearing loss.  My PCP checked my hearing and I had 90% loss in my left ear, he immediately scheduled my MRI.   The rest as they say is history.

Denise

[Pembo]

Hi Erin. I'm sorry the ENT was such a jerk!  I had dizziness for about 6 weeks three years prior to diagnosis. The dr kept saying it was labryinthitis and that it would go away. I even went to an ENT who never did give me an answer. The dizziness went away. Fast Forward, in Feb 2004 I noticed tingling in my right cheek and then I got tonsillitis. I never felt right after that. For the next month I was in and out of drs offices, then the dizziness started and it was bad. It was so bad one day that I ended up in the ER and we had a CT scan, but I was told I just had sinusitis. After being told it might be the labryinthitis again or it could be MS (hated that doc), or allergies or sinus....I finally saw an ENT. He noticed "something" on my CT and ordered the MRI. That "something" was a 4 cm AN!

By the time of surgery I had been having constant dizziness for 3 months and I was unable to eat hardly anything because it made me nauseous. Turns out the tumor was pressing on the nerve to the stomach and causing distress.

Good luck and make sure that MRI is done WITH contrast. Ask for your films when they are done and take them to your regular doc. Get answers quickly. The not knowing was worse than the knowing for me.

[Battyp]

I Erin...

Geesh I hate when doctors say it's all in our head and we need professional help!  Especially when they do not do the test needed to back up our complaints!  (wanna me to go rough him up?   )

First MRI W CONTRAST is a must! If they do not do the contrast often times they don't see the tumor if that is that probelm.

Second:  KUDOS for being proactive!  If I hadn't been proactive at the point I did I'm convinced I'd be dead.  So always speak up you know as much as the doctors!  We took a sheet from my sons symptoms for the diagnosis we (him and I) thought he had and were told NO, it's all in your head!  I found another doctor who listened, ordered the correct test and got him diagnosed.  There are docs out there we just have to find them!

Third: YOU ARE NOT ALONE.  Even though right now you might feel you're alone and why me.  Please know this is a wonderful board of support and we will answer, listen, cuddle, joke, and answer any question you have IMO nothing is redundant, no is too silly.  The only question that is a problem on here is the question not asked.  THe one not asked can be the ones to help you the most if you have the answers from someone. 

Please keep us posted.  We hope it's not an acoustic neuroma but if it is, heck even if it's not, and you need support you are in the right place!  You are not being psychosomatic you know you better than anyone else don't let them get you down!
Keeping you in my prayers!
Michelle

[Cheryl R]

 The first ENT I saw also said I had Menieres and when I asked if it could be a tumor,he said I just get anxious.      A year and a day later I had a 8 hr surgery for my "anxiousness" and had completely lost my hearing without realizing it!        I eventually did get an apology out of him as had to take an elderly relative to see him.   He was the same way with her about being anxious and she was not an anxious type lady.              He said come back if had any sudden hearing loss which I never did.                     I have told every resident ENT this story, as have come across several with my surgeries. in hopes of it being a learning  lesson to them on how not to treat patients.       I am aware they have similar symptoms but there is nicer ways to put it.
                                       Cheryl R.         

[Battyp]

Wonder if we were dismissed because we were female?  I know my complaints were dismissed and it wasn't until I got nasty that they actually did the mri but by then I had lost my hearing and my symptoms were a lot worse.

[EriKatLyn]

I wouldn't be surprised if he was a jerk because I was female.  While I was there he was bellowing for his secretary to get him something, she came in and what he needed was two inches from his feet.  He made her get down on her hands and knees to get it for him!  And the worst part was she is 8 months pregnant, and he made her get down on all fours, I couldn't believe it.

Right now I am not scared per se, I just want to know what it is.  At least if I know I can deal with it.  Like I said I just want to know, I especially would like to know because I don't want my hearing to start getting worse.


I just want to know! 

I think I may go to my Nurse practitioner to see if I can get an appointment, and just tell her I want an MRI, the ENT said I should go to a Neurologist (the nearest one is 2 hours away) and I know it would take forever to get in.

This board is great, cause at least now I know that there are other people with symptoms like mine and I am not going crazy!
-Erin

[Battyp]

No Erin you are not going crazy and it's not in your head!

I'd also hope you'll see someone else for treatment instead of mr ent control freak!

Hopefully you'll have some answers soon!

[Gennysmom]

Erin....keep being proactive.  The average ENT does not have experience with AN's...the ENT that sent me to get the MRI said he sees an AN pop up about once a year or so...and that's in a pretty dense urban area...not even in the boonies.  If they're still stalling you, go find another ENT to get a second opinion.  I would not go back to that guy.

Also, make sure they order your MRI with contrast. 

Keep up the fight, and I hope you get some answers soon!!!!!!!!!!

[Pembo]

Erin, definitely call the NP and ask for the MRI with contrast. Keep bugging her/him until you get it. Then bug them to get the MRI. Then bug the MRI place about the films and get the followup appt right away.

Once the ENT ordered my MRI, the office girl couldn't get me in for over a week. I didn't like that and asked where else I could go to get it sooner. I got an appt for 2 days later, a Saturday.  The MRI tech was so great. I asked for copies of my films for my doc and I just had to wait an extra few minutes.

I was scheduled to see the doc on Tuesday. I called Monday am and asked for an appt that day. I had to drive to his "other" office but they got me in. My ENT was great, he had trained under my surgeon so he made a personal call to him for me and got me in to see him the very next day. My surgeon usually didn't see patients on that day but made an exception for me.

Continue putting the pressure on....I have defintely learned that if you push you can get what you need but if you sit back, you will wait and wait and wait.........