Questions about symptom onset and how long to diagnose

[Patsy1960]

I have a hearing test on Monday though have thought of cancelling and rescheduling with new ENT as i dont like the ENT my primary care recommended.  You all know my story diagnosed with HB on Meds, noticed ringing in ear after one week of taking meds. Went back to Doctor. He said i had a lot of wax in my left ear impacted. They removed ear starting throbbing and than ringing has been ringing straight no stopping just on left side for 2 weeks. He sent me to ENT as he thought impacted was and cleaning had damaged my ear drum he looked it and said it was damaged.  Saw ENT my Doc recommended and he look for like 2 seconds and said nothing wrong with your ear, come back and get a hearing test and he left he office didnt spend more than 2 minutes with me.  Well ear still ringing.  We went to my Child High school orientation and the tall ceilings and acoustics and voices caused my ear to go crazy.  So now i am convinced i have AN or another type of Brain thing. So i am now terrified. Does anyone know a great ENT in Northern Virginia and a good Nuero should i need them. How long did some people have tinnitus before other symptoms started and you sought medical verification?Thanks for all the support.  Scared. 49 year old married mom of one teenage girl who is really worried about me.  Oh plus i have headaches which take 4 motrin to knock out.

[nteeman]

I first had an ENT that was less than concerned with my symptoms.  I was advised by someone else to see a Neurologist, explain my symptoms and get a MRI. I did just that and got my diagnosis. Just went to a Neurological practice that was on my plan and saw the Dr. that was available. Of course, when it came to picking surgeons I did a little more research.  However I was very pleased with the neurologist that I found there.

Neal

[cindyj]

I had tinnitus for 2 years prior to deciding to go to the ENT about it - I only went then because a friend of mine said she had ringing in her ears and the doc put her on steroids and cleared it right up!  So, I went to get a prescript for steroids only to have the doc do further tests and the AN was discovered.  I have thanked my friend over and over again for having ringing in her ears - there's no telling when I would have sought medical help otherwise!

I had had bouts of severe vertigo and constant wooziness/dizziness for years prior to the tinnitus, but I had just "learned" to live with that thinking there was nothing that could be done.  Silly me!

As you know from other posts, the only way to determine if you have an AN is to have an MRI w/ contrast.  There are tests that can be done prior to the MRI that may indicate something might be there, but only by an MRI can a diagnosis be made.

I, too, am 49 - I have 2 teenage boys.  Please keep us posted and let us know how we can help.  Best to you,

Cindy

[Joef]

I guess I'm lazy! .. I've had "T" since a teenager....(and thats been 20+ years)    in my 20's I get a muscle twitch once in a  blue moon ... again, I did not worry, I did not effect my life at all ....

it was only after numbness and dizzness... at 40! I went to my GP ...he asked about headaches .. I said Yes... every few weeks I get one... (and or neck pain) ... also I said my hearing was getting very bad... (but my mother has earing aids on both ears so I figured it was just genes)...

He sent me for a MRI ...

and now you know the rest of the story.....

Dont be terrified ... ya, it could mean surgery (but my thoery is ... no one gets to thier 80's without some sort of problem ) ... we are all still here!!

[Brendalu]

Patsy,
I think everyone's symptoms are different.  I never had tinnitus, I never had loss of hearing.  I did have major headaches and severe balance problems for many years (nine years prior and many doctors later) (I still do after almost four years since my trans lab surgery).  My pcp diagnosed me and was confirmed by an MRI with contrast and later a trip to the ENT to schedule surgery and then off to the neurosurgeon he worked with.  All in a matter of days after the initial diagnosis.  I have tinnitus now!  I'll be keeping you in my thoughts and prayers.
Brenda

[cherrypiper]

i had the ringing in my ear for about 2 years b4 i went to ENT in June 07. Turns out they proved to me i was deaf over there. no hearing at all on any frequency. so we found the little tumor , about a big almond sized and flattened like one on my acoustic and facial nerve. Had successful surgery Dec 07.

am now looking into a transear set up later this summer, but still investigating that one. my ENT says that, Transear, is just a fancy hearing aid, but he does BAHA's so he isnt unbiased.

[Kathy M]

I had only subtle hearing loss (even my family doc didn't detect it) prior to my diagnosis.  Balance issues were the most pronounced.  When i got the referral to an ENT last fall, he said I had a gait disfunction and was going to refer me to a doctor who specialized in this type of issue and would teach me about proper footwear.    Turned out, I had an AN discovered thru an MRI w/contrast, ordered by a local neurologist!  I hope I run into the ENT sometime and thank him for his wonderful advice!

Whatever you are told by your ENT and other doctors, if it just doesn't seem right or you have lingering concerns, don't hesitate to get another opinion until you are comfortable with your care.  Nobody else is going to care for you as well as you!  Sometimes, we fall short of that, but nothing is more important.  That is a life lesson I have learned through this experience.

Best of luck to you!!!

Kathy

[kathylittlejohncobb]

RE:  "How long did some people have tinnitus before other symptoms started and you sought medical verification?"

Only a few weeks in my case.  I actually thought I had a sinus infection that was causing the ringing in my right ear....  

[AMD]

I have seen an ENT on/off my whole life.  Hearing loss and tinnitus recorded at age 21, it was present before that.  AN diagnosed at age 29.

[Lilan]

I was diagnosed very quickly last summer, immediately really.

But, a long time ago I felt pressure in my ears and asked to be referred to an ENT. The guy was an arrogant jerk. Gave me a once-over of a hearing test, scoffed at me and told me nothing was wrong.

When I have a spare minute, in all seriousness, I am going to write him a letter now telling him of my diagnosis and what an a** he was, if I can track him down. (Have changed health plans and don't remember his name.)

I doubt my problem was diagnosable then, as my hearing was fine, no other symptoms (I do have some fullness on both sides from allergies) and the tumor must've been teensy -- so I don't even consider it a misdiagnosis -- but there is no excuse for treating a patient that way. (I was in my 20s, very healthy, not a malingerer or alarmist -- it was the first time he'd met me!)

About five years ago, I had an episode of falling-down vertigo. It resolved quickly with no other symptoms and was assumed to be viral. Was that the tumor? Probably, but not necessarily -- they'd had five cases of vertigo virus that weekend at my physicians' group, so maybe that's what I had, too!

Last summer when I started complaining, I had a whole concert of symptoms all at once -- imbalance, dizziness, ear fullness, almost undetectable facial weakness. The ENT immediately ordered an audiogram -- very mild high-frequency loss -- and MRI -- and there it was. Though I will likely be treated by other surgeons in the end, I am grateful to him for his quick action.

[EJTampa]

I never had any new symptoms AFTER the tinnitus started.  I had a bout of vertigo way before the tinnitus.  I had some hearing loss, with the feeling of a blocked ear after the vertigo, but the tinnitus is what sent me to the ENT and ultimately to my surgeon
 
Ernie

[MissMolly]

I started noticing the tinnitus in earnest about October 2008.  I realized when I went to bed and all was quiet (my husband didn't have the tv on) and I noticed it.  It has been getting progressively louder since then.  A few weeks ago, I got out of my car and was SURE the smoke alarm had gone off inside my house.  I raced inside to check and/or reset the system and noticed that the 'alarm' didn't get louder once I got into the house and the control panel wasn't lit.  So it has been getting loud. 

Around the same time I noticed I was having trouble understanding what my children were saying.  Particularly if the dishwasher was running or I was by the oven fan.  Very frustrating.  I started feeling 'lightheaded' around February and that prompted me to go to the doctor, then ENT, then audiogram (showed mild loss on left side that did not look like noise induced), then MRI which diagnosed. 

I had also been having headaches that felt like they were around my left temple/cheek area.  I attributed it to a sinus headache as there was some pressure associated with it. 

After I was diagnosed, a few things came together for me.  I have had a 'weepy' left eye for many months now.  I first thought it was due to the winter cold and/or dry air.  Now I'm attributing it to the AN. 

In the past two months I've been struggling more with dizziness/lightheadedness and some days i have awful balance. 

Hope this is helpful.

MissMolly

[Syl]

One day, back in June 2007, I sneezed. Both my hearing loss and tinnitus began that instant. I already had dizziness. I was 39 at that time and had gained weight. Since diabetes and high blood pressure run in my family, I thought for sure that's what was causing the dizziness. It never once occured to me that the dizziness and hearing loss were related. I'd gotten an ear infection 2 years earlier with the tinnitus and hearing loss. But some antibiotics took care of that. My hearing came back and the tinnitus went away.

The dizziness had gotten really bad. Every time I stood up, the room began to spin and everything went black. After I passed out on my kitchen floor, I decided to go to the dr. I didn't have an ear infection. She ordered some blood tests which showed I was healthy. She prescribed nasal spray for allergies. I used the spray as directed, but my hearing still didn't come back.

I didn't want to play the part of guinea pig for the drug labs so I didn't go back to the doc for 5 months. My hearing still hadn't come back and the dizziness was still present. This time my PCP did refer me to an ENT. Within 2 weeks I had a hearing test then an MRI. Two days later the ENT called me to tell me what I had. By now it's December of 2007. The first ENT refered me to Dr. Kato, who performed my surgery in June 2008.

That's my story.

Syl

[leapyrtwins]

I never had tinnitus - still don't - guess I'm just one of the lucky ones.

My symptoms prior to diagnosis were fullness and diminished hearing in my AN ear - and balance issues I didn't realize I had until my neurotologist tested me.

I originally thought I had a cold/sinus thing going on, but when it didn't disappear in 3 months I casually mentioned it to my internist.  He couldn't see anything in my ear, so he gave me some ear drops.  We agreed if the symptoms didn't go away in 10 days I'd see my ENT.  ENT did a hearing test, ordered an MRI - which found my AN - and referred me to my neurotologist.

Jan

[Darin]

    Hey Patsy, it's exciting being a newbie, eh? I finally can spell 'acoustic neuroma' without even thinking how to spell it! Still working on schwonnoma...maybe that's right?
    I found out about a month ago that I have a 3cm tumor. I have had hearing loss for 4ish something years, and I am 25. I thought it was getting worse, so I went to an audiologist for an audiogram(a basic hearing test). It showed that I had about %50 hearing in my right ear. The ENT doctor told me he wanted to send me in for a precautionary MRI. He said it's very rare that the MRI would show something, but just to be sure...and then they called me 3ish days after my MRI, saying 'something' was found on the MRI, and we made an appt. in 4 days. Those four days were so long.
   I have ringing in my ears now, it's gotten much worse in the last three months. When there's alot of background noise it becomes difficult to hear people talk, and loud noises really irritate me. First it makes my ear ring, then emotionally I get mad that I have a tumor in my head!!! It's hard to deal with, but you can find tons of good info on the internet, as well as browsing posts around here. Knowledge is power. Now that I know what I'm up against, it becomes manageable.
- Darin