Survey Of Balance Issue vs Hearing Issue

[Omaschwannoma]

I would like to start a survey on this forum of AN patients who know they had symptoms earlier than when diagnosed.  Most AN's usually present with hearing loss, but I believe they present with other problems first.  My thinking on taking this survey is in hopes doctors become better at diagnosing earlier before hearing is damaged.

Before reading my "symptoms list" I would like to say I NEVER had health issues (breast cycsts but that's all), did not take OTC meds, nor script meds, was never afraid of heights and balance was exceptional.  I was in perfect health while sailing around the world (literally) until we returned to the US in 1991 where my health took a downward spiral for the worst. 

Looking back on my journey I can remember "red flags" as early as 1991 (dx'd in 2004).  My first "red flag" was in 1991 while at an intersection I had traveled frequently and suddenly couldn't remember where I was.  Nothing looked familiar.  My GP ordered MRI as he said could be brain tumor.  This was not taken "with contrast" so MR was negative for tumor, tinnitus was on-and off.  1993, showed with "worst headache of my life", but was dx'd as allergic reaction to perm solution headaches continued on and off.  1994, severe allergies (anaphylactic-type reactions) headaches were now dx'd as sinus headaches.  1996, tremendous fear of heights, unsteadiness, extreme exhaustion (falling asleep for no reason) dx'd as "getting older" 40 years old, had rear-end collision now headaches were dx'd as whiplash.  1998, tinnitus was constant and dx'd with hearing loss due to one loud concert in my twenties, fibromyalgic pain, radiating pain in arms and hands (dx'd as stress).  2002, excessive saliva, facial muscle ached, biting inside of mouth, tongue and lip, drooling (pictures of me smiling didn't look the same).  2004, hearing loss and finally diagnosed.  Had surgery January, 2005.

I really would like for other patients to avoid the SSD issue so perhaps on this forum we can shed light on how better to dx early on.

[ppearl214]

Karen,

I wish I could really give you good answers on my behalf, but as you know, I have been dealing with multiple issues. I can share that since I had my pancreas diagnosis first but I was experiencing balance and leg weakness issues at the time... that is when my head MRI was done and I was dual-diagnosed with my AN and Chiari 1.  I know the balance issue was initially attributed to the AN (as the leg weakness to the Chiari 1) but later come to find out that both share some same potential symptoms, thus, was not totally possible to determine which was causing what issue.  But, at least my AN was diagnosed at its early stage, thus, choices of treatment options.

Hoping others will chime in as this is a terrific question presented by Karen. Would love to see what others have to say.

Phyl

[leapyrtwins]

I had no balance issues.  My one and only symptom of AN was diminished hearing.  One day I was sitting at my desk at work when I suddenly realized that I couldn't hear very well out of my left ear.  I figured it was a sinus issue and that eventually my ear would "pop" like it does on an airplane.  I'd had this happen to me before when I had, or was getting, a cold so I wasn't concerned.

Time went on and I never did develop a cold and the fullness in my ear remained.  I noticed that if I held a phone to my AN ear everything was muffled and I while I had decent word recognition, I really couldn't hear very well.  I just figured it wasn't anything serious, switched the phone to my right "good" ear and just moved along.

I kept telling myself that I'd have the problem looked into if it hadn't gotten better in a week.  The week turned into months and finally I went to my internist for a regular checkup.  He asked if I had any problems, and I remembered to mention my ear.  He thought it was probably wax buildup but could see nothing.  He gave me some ear drops and we decided if the problem wasn't gone or better in 10 days I'd see an ENT. 

Things didn't get better, so I went to the ENT.  He saw nothing in my ear either, but did a hearing test.  When the hearing test was compared to one I had in his office about 8 years earlier, it was obvious I had diminished hearing.  He sent me for an MRI and the AN was diagnosed.  From there I was referred to a neurotologist.  The rest, as they say, is history.

Sorry for the lengthy response.

[Sue]

Strange as this may sound, I remember two times circa 1995 when I experienced vertigo.  Odd that I remember it, but there you go.  I can remember lying in bed and feeling the room swirl around me.  I thought I had "water in my ear", or something on that order I guess.  It lasted a short time, as was true of the second episode.  And that was that. I never had that again.  But looking back, I do believe it was probably caused by my AN that I didn't know I was growing.  Maybe not...but suspicious, don't you think? 


You are lucky your ENT gave you an MRI so quickly.  Apparently at my ENT's office they don't do MRI's unless you tell them you have issues with dizziness, which I didn't.  So the CT scan I had didn't show the MRI and he said, and I quote, "You have no tumors."  HA HA  Guess I showed him a thing or two...an Acoustic Neuroma buddy - so there!   

Sue in Vancouver

[Jim Scott]

Hearing loss was my predominant symptom.  Balance, taste and pain issues came much closer to my diagnosis.   

Jim

[nancyann]

Only symptoms I ever had was right sided hearing loss & constant tinnitus, for years.   Never had balance problems pre-op.

[matti]

My first symptoms were ear fullness and occasional balance problems. Both subsided when I started experiencing facial numbness, tingling and twitching. My hearing  remained perfect until surgery when my hearing nerve was sacraficed to save the facial nerve.

Cheryl

[goinbatty]

My first "red flag" was in 1991 while at an intersection I had traveled frequently and suddenly couldn't remember where I was.  Nothing looked familiar.


You're the first person I've heard mention this.  This happens to me also.  I attributed it to my age, too much stress, etc.  Wonder if this is a common complaint with AN.  But the symptom that got me to the doc was one sided tinnitis with diminished hearing. 

[Richey]

You know, looking back one can only wonder if certain things that happened were connected to the AN or not. In 2004 my first signs that something was wrong were balance issues that got much worse than what I had had a little of for a long time. When they found the thing it was small 5x8mm

Now about ten years earlier I went through a period of dizzy wacky feeling head, fatique,and just being confuse and dull mentally. I went to a neurologist that gave me the most through exam I've ever had and then he told me that I was giving him a lot of symptoms that he could not put together. I did have an MRI at this time but not with contrast( I tried to get a copy of this mri but they said it was more than ten years old and had been destroyed). Anyway I was working shift work at the time doing a lot of overtime and they came to the conclusion that I needed more rest and my blood pressure was a little high so they put me on meds for that. I gradually began to feel better and got on day shift where I did get more rest. Now I wonder if that could have been related to the AN but I have doubt due to the time involved.

Back to 2004 my only other symptom besides the balance thing was fullness in the head and tinnitus but it was mostly in the right ear and the AN is on the left also just a week or two before I had GK I started getting this swishing noise in my left ear but I still had good hearing.

A few months after GK my hearing was gone, my balance got better with time and is manageable. It is affected by how much rest I get, I have retired recently and get much more rest. I have not had any facial issues. The tumor is stable and I will get another look in Feb and that's will be a year since the last MRI. The previous three MRI's looked the same.

Hope my rambling helps, but I think what we don't know about AN's may be greater than what is known.

Rich

[Omaschwannoma]

The "hearing" dx vs "balance" or "other" is taking the lead as of now.  As Rich states, "Hope my rambling helps, but I think what we don't know about AN's may be greater than what is known." is the reason why I started this survey.  There is much they don't know about the intimate workings, connections, etc. of the brain and how each section has an effect on the bodies awareness and function.  As has been stated before by "those in the know" headaches are not related, but look at other brain tumor symptoms and headache is an indication.  Some "in the know" will even go so far as to say this isn't a brain tumor.  Even though this AN develops w/in the IAC, these are nerves to the brainstem and nerves to the brainstem are, IMO, brain issues. 

Don't have access to "old Mr. Wizard" to help answer my ramblings and maybe he's here on this site to clarify the intimate workings of electricity, nerves, brain input/output, etc.  When the AN disrupts the "flow" of signal to hearing, balance, facial nerve, I wonder about the "flow signal" back to the brainstem.  The interrupted signal could misfire along the pathway to the brainstem where other nerves intersect there and perhaps this disrupted signal is picked up by those other fibers.  Isn't this much like electricity going through an uncoated wire where the electricity expands beyond the wire.  The energy/electricity follows the wire, but is not contained IN the wire 100%.  It has an energy field that can be felt if you touch it (live wire shock).  Rambling here what's been running around in my head for sometime.  Okay, my head hurts now.  Guess it's time to shut down and go outside to pick weeds!  Have a great day.

[er]

my systems were 5 years before surgery    I slept allot,   incoherent could even remember how to run a copy machine, balance off I was falling a lot, speech impairment, then the last year was muscle numbness on my cheek, blare eye sight , and a feeling of something in my left ear.

[mindyandy]

Thinking back...I've always bumped my right shoulder into the walls. My balance has been off for awhile...especially at night..I feel like I'm walking all crooked or drunk...LOL. Just 6 months ago I started to have ringing in the ear and the feeling of fullness. I have some memory problems.. it takes me longer to remember things. I had taste distrubance for about 5 months but seems to be ok now. I am going in for CK here soon.

Mindy

[Dantheman]

I was diagnosed with an  Eustachian tube blockage in 2005. Decongestants cleared it up. In the summer of 2006 I noticed that I would occasionally be off balance when turning. Nothing major though.
In Oct. of 2006 I awoke in the morning deaf in my right ear. That led to my AN diagosis in Dec. 2007. 

Dan

[Ellenmn]

I had balance issues sudden black out spells sharp pains in the ear. The pain in my ear wasn't in the ear canal (that came later) but just above the ear canal. I went through many tests but no MRI. The doctor said I had benign positional vertigo. Then many years later the plugged ear came on and that’s when an ENT scheduled an MRI

[irene]

Does anyone else experience ear pain on the side of the their AN-- occ stabbing ear pains that come and go??
(associated w/fullness and the usual tinnitus +/- hearing loss)? Thanks !
irene