What were your symptoms leading up to diagnosis?

[b28]

Hi everyone, what were your symptoms and/or experiences leading up diagnosis?

[frenchjoey]

Hi,

Slight loss of balance at first. Had it for several months. It got slightly worse so I went to the neurologist who said it might have something to do with my eyes. Had some specific visual training and when that didn't work, I had an MIR and that was the beginning of a new adventure.

I got to speak to two other ANers a couple of days ago, one of them was diagnosed after a serious episode of vertigo and the other because he started experiencing tinnitus and a slight loss of hearing.

But all these symptoms are very common and they do not imply that there's an AN lurking somewhere in the dark. Definitely not!

Hope this helps

Joey

[rvb755]

Hi and welcome.  I had ringing in my ear for many years.  I always attributed this to listening to music to loud in my car when I was younger, so never got to worried about it.  The thing that finally sent me to the doctor was bad hearing loss in the AN ear.  After a hearing test revealed bad hearing loss on only one side I was scheduled for an MRI.  The MRI revealed the acoustic neuroma.  I never noticed my balance being off but I had been doing some mountain biking with a group from work and I fell more often and more trouble negotiating the trail then some of the others, so my balance was probably affected but I had learned to compensate somewhat.

Rick

[Ellenmn]

The first time I had bad vertigo symptoms. They ran me through allot of tests but no MRI. They told me I had Begin positional Vertigo. My ear would hurt just above the ear canal, and one day my ear felt like somebody stuffed something in it. The ear doctor told me to come in and he would clean it out (more than likely earwax). Nothing to clean out so I had the MRI that's when they found the AN. Had Radiation when it grew future I had facial spasms and really bad headaches.

[TJ]

Did not know I had an AN until I had "sudden hearing loss" in my left ear.  Went to doctor he did an MRI to see what was happening in the ear, found out I have an AN on the other side the right ear.  About 6 months after they found it, things started to happen.  I have balance issues and severe tinnitus in the affected ear.  Since I had already lost most of my hearing on the left side, the doctor did not want to remove the AN as that would have left me deaf.  So I had cyberknife a year ago and will be going soon for my one year MRI to see if it died.

TJ

[RAB]

My first symptom was a clogged feeling in my right ear that would not go away. Tried cleaning out the wax, no change.  Then I noticed sort of a vibrating sound/feeling when I heard shrill noises.  Thought I had an ear infection.  No infection.  Clogged feeling gradually got worse. Thought it might be allergy related.  Woke up one morning with near total hearing loss in that ear and very loud tinnitus.  Felt totally clogged like when you have a head cold. Allergy Dr. assumed I might have a collapsed eustation tube. Put me on prednisone.  It felt better and hearing restored.  Then gradually blocked up again.  Then one morning I woke up completely blocked up again, with it  came severe headache in back of my head, neck, pain in face, nausea, dizziness, drunken gait, slight facial paralysis, the works.  Very frightening. I thought I was going to die. Allergy Dr. recommended ENT.  ENT completely blew diagnosis.  Meantime, I saw chriopractor,and TMJ specialist.  Received injections in muscle for TMJ to reIax muscle spasm. I was miserable for two months.  Symptoms gradually began to resolve on their own. Then my gynecologist (yes) told me to see a neurologist anyway, could have a neuroma.  She was right. God Bless her!

[Archer]

My symptoms were so gradual in showing it took about a year before I was very concerned.  Chalked it off to getting older.  During that year I noticed as I walked I would not follow a straight line unless I looked down and paid more attention than I was used to.  I also started to notice I favored my left ear when using the phone.  I also started turning my left ear towards a sound if I was listening closely for something.  When it finally got so I could not follow a conversation in a crowded or noisy situation I told my GP about it.  He somewhat chalked it off until I persisted.  He sent me to an audiologist who sent me to an ENT and finally an MRI showed the AN.  A few months later I had it removed and have done quite well since.

[Peter325]

I had tinnitus accompanied by 'crackling' and a sense of fullness in my AN ear, went to the GP and she thought it was ear wax, cleaned the ear and told me to wait a few weeks to see if it cleared up, when it didn't she sent me to a ENT specialist who did a hearing test which revealed high frequency loss on the AN side which I've had since the early 90's, so I didn't think much of it but he seemed to think it was significant, sent me to do some fancy hearing tests where they map the passage of sounds through the hearing nerve and they seemed worried too and I was scheduled for an MRI, that's when I did a little research and self diagnosed myself with an AN. Waited 10 months for the MRI, 2 weeks after I got officially diagnosed.

After the diagnosis I realized that I've been having symptoms of this thing for 20+ years, first symptoms were occasional metallic mouth episodes, main ongoing symptom was persistant high frequency hearing loss on the AN side. This last year it's been minor balance issues, if I am riding my bike and I turn my head to look behind me I can't keep a straight line. That sort of thing, jumping out of bed at night I lurch a bit, like a drunken sailor.. darkness seems to be harder for me.  Oh and occassional shooting pains behind the AN ear.

[Raven]

Woke up one morning and could not hear ANYTHING in my left ear...........hearing was perfect when I went to bed the night before and there were no other symptoms.

John

[PeaceAndLove]

Hi b2b and welcome

I had a tingling on the AN side of my tongue and after 6 months it progressively got to where I could not taste on that side and was starting to depress me.  Told my GP, he sent me to an ENT who sent me for MRI and then as Gomer Pyle  would say- "Sueeeprise, sueeeprise, suuueeeeprise"!   

I too thought my hearing loss was due to age and also family genetics.  I went to ear doctor 10 years earlier, when I first started losing hearing, and she said it was my scarred ear drum from chronic ear/nasal infections. OK, sure... what do I know?  Also explained ringing in my ears and tones that would suddenly appear and disappear that I thought might have been some transdimensional cerebral download (no, I was not on drugs).  Never experienced pre-op balance issues, but the surgeon said it was probably because my good side compensated.

Good luck to you.

Peace

[leapyrtwins]

Feeling of fullness and diminished hearing in my AN ear.

Balance issues, but I didn't know about them until the neurotologist my ENT referred me to tested me.

Jan

[Jim Scott]

b28 ~

My symptoms were a five-year deterioration of the hearing in my left ear, which I adapted to, excused and ignored.  Approximately nine months prior to my AN diagnosis I gradually lost my sense of taste and with it, my appetite.  Everything - even my favorite foods - tasted like cardboard.  That ultimately resulted in a very noticeable weight loss (approximately 35 pounds) that I could afford to lose but that put me at a weight I hadn't seen since my 20's (I was 63).  I also experienced occasional 'stabbing' pains at (what I later learned was) my AN site.  What finally drove me to the doctor was a dramatic loss of balance that found me bumping into door frames and, once, almost falling down the stairs in our residence.  My wife was very concerned and practically demanded I see the doctor.  Long story short: MRI scan discovered a 4.5 cm AN pressing hard on my brain stem.  De-bulking surgery followed by FSR followed.  All went well (translation: no complications).  That was in 2006.  I'm fully recovered and doing fine, now.

Jim     

[mindyandy]

Sense of taste. I think it tasted like metal on AN side. Also my ear. It sounded like I was listening to people under water. It also hurt. Ko

[JAndrews]

A sudden hearing loss (not all of it, but enough to be very noticeable the second it happened) and immediate loud ringing. I was 8 months pregnant. Had a MRI after she was born. The doctor tried steroid injections into the eardrum first. When that didn't do anything then he sent me for a MRI.

[PaulW]

My first symptom was, I woke up in the middle of the night with one eye stuck open.
I could not blink properly with one eye, half my face was partially paralised, Went to hospital immediately, they suspected a brain tumour, did a CT scan and found nothing.
Eye and face started working again after about an hour. It was put down to an allergic reaction.
15 months later I suddenly lost some hearing in one ear. But I already had other symptoms which I did not realise.
My balance had deteriorated, I was getting tired easily, and my concentration was not what it was.
Thought I was just getting old.
Now that I feel much better I realise the tiredness and concentration problems were caused by the deteriorating balance.