Symptoms

[Static]

Ok, so I know many of us has had many symptoms that caused us to go for treatment, but it might be interesting to see what things we've had in common that we thought were just "out there" so to speak and the doctors just dismissed.  I  have always wondered if anyone else experienced this symptom and never asked so here it is.  I had, for a couple of years, a whistling in my right ear when the wind blew and told my doctor who dismissed it.  Not sure what my ent thought of it, he never said, but I did mention it to him by the time I had gone to see him a few years later when I eventually started losing hearing and he discovered the AN.  AFter surgery, I couldn't hear it anymore, obviously because I am now deaf in that ear but I am wondering if it was the position of the tumor that when the wind blew in my ear, caused the whistling sound, or was I just cracking up??? LOL  I always wondered about that whistling, anybody else have anything similar?

[Jeanlea]

I didn't have a whistling sound, but I did hear something that sounded like a radio on very low volume.  Just thought I was imagining things.  Must have been the tininitus.  After I learned I had an AN I was able to see that I had more symptoms than I thought.  Didn't pay attention to them.  Thought they were a part of getting older.  I had some slight balance problems when moving around my kinders.  Almost stepped on a few of them.  lol  When I would squat down and then stand up again I'd feel almost like passing out.  I though that was due to low blood sugar or low blood pressure.  Amazing the things I could ignore.

Jean

[Larry]

I had loss of hearing on the phone only


Larry

[BevM]

My symtoms started with Tinnitus in the "other ear" over three years ago.  The AN (right) ear is just now beginning tinnitus.  According to the surgeon consult yesterday, the causes might be unrelated to the AN.  Dr. Slattery (HEC) is recommending surgery but I am working toward a consult with Dr. Chang at Stanford for an opinion on CK.  The symtoms continue to get worse, imbalance, pressure and pain in the right ear.

Good luck to you!

Bev

[lmurray69]

I have had hearing problems all my life. I wear a aid in the right ear An and deaf in left ear. I had a stroke and the did a MRI on the head and found i had a AN and colesteroltoma..they never found it when i had hearing test done...

[Pembo]

My tumor was 4 cm when I had surgery. Only 3 months before surgery did I start my trek to the drs.

3 years BEFORE they found my AN I had a bout with dizziness. It lasted about 6 weeks and the dr said it was labryinthitis. When it came back 3 years later I thought that was what was wrong again and it would go away.

3 months before surgery I had a little facial tingling in my cheek, a month later the dizziness hit and I noticed that my phone was getting quieter   and it felt like my ear needed to be popped.

After learning about AN's I realize that all my indigestion problems from the past 2 years were related. The tumor was pressed against the nerve.  Also I've had shoulder discomfort for 5-6 years, nothing to tell the doctor about, just a tightness. Again the tumor was against that nerve as well. Also I had eye twitching.

[Jim Scott]

Until late in 2005 when walking - without lurching -  became difficult (as my lifelong natural ability to balance began to diminish) and I developed an occasional stabbing pain in my left temple (where the AN tumor was growing, unbeknownst to me) the only AN symptom I experienced was the total loss of hearing in my left ear, some 5 years before other any symptoms appeared.  I (foolishly) ignored the hearing loss as age and occupation-related.  It wasn't.  Now, 6 weeks post-surgery, I'm still deaf in my left ear - but I can walk near-normally (if you observered me you wouldn't notice anything abnormal about my walk).  Best of all...no more AN tumor!   

[TT]

I started with tinnitus in 1999 in my right ear. My doctor at that time told me I had permanent damage form shooting a gun. I have learned to live with it. I should add that since 1999 I had two sinus operations to remove polyps from my sinis cavities. This caused problems where I lose my sence of smell and taste. The only remedy was to take small doses of prednizone  (steriod -bad stuff). I was on it until a few months ago because my new ENT wanted to go in another direction. Shortly thereafter, my ear became stuffed and the ringing increased. The therory is the predizone kept my real problem going unnoticed. As soon as I was off it, the AN let me know of its presence. When this was all happening, I was doing some lawn work and sweating heavy. My hands were full and I wanted to remove the persperation from my head so a kind of snapped my down to my chin a few times. All of a sudden I heard the exact same tone a slot machine sounds like when it paying off ( I know, false hope). I had no idea where this crazy noise was coming from. It took me a bit to figure it out and  :oit's still there. If I put my finrger in the bad ear and kind of pop it out, I hear all different kinds of chime sounds. 

Terry
2cm/ surgery scheduled August 24, 2006

[Sefra22]

After learning about AN's I realize that all my indigestion problems from the past 2 years were related. The tumor was pressed against the nerve. Also I've had shoulder discomfort for 5-6 years, nothing to tell the doctor about, just a tightness. Again the tumor was against that nerve as well. Also I had eye twitching.

Pembo, I am really intersested in learning more about the relationship of your AN to your digestive problems. I have some stomach issues myself and have wondered if they could be related. What is the nerve that your AN was pressing on to cause your problems?

[Jim Scott]

For what it may be worth -  to anyone: 

Due to my large AN (4.5cc) - in the six months before I had it removed, I lost much of my ability to 'taste' - as well as my appetite.  Subsequently, I lost over 30 pounds in that period of time (6 months).  I'm eating well and gaining some of it back, now.  All the tests/scans of my digestive tract were normal as well as the MRI that was originally ordered so my primary physician could see my sinuses, which were actually near-normal. 

My gastroenterologist said the weight loss was likely due to a combination of my tumor-related diminishment of taste (and appetite) along with related stress, which sometimes gave me very violent hiccups and an unpleasant 'rolling stomach' sensation (but no nausea).  His analysis makes sense to me.  In any case, with the AN tumor gone, I'm returning to normal in terms of taste, appetite and weight.  Life is good .

[Static]

Ok, so while none of the symptoms I had that are the same ever exactly pointed to the AN.  I have had stomach problems and had a perforated ulcer repaired in 1999.  I also had sinus problems for years and had polyps removed in 2000 and had a deviated septum repaired in 1996.  As for the ear ringing, I never had it until that day that I started losing the hearing in my ear and it is getting worse.  My neighbor has their AC on so that is making it worse but the TV does not :/  I had my AC on the other day and the only thing that really keeps me from putting it on now (besides the electric bill) is the noise it causes in my deaf ear.  Weight loss would have been a blessing but the weight gain I have had since the surgery has been horrible.  I walk as much as I can but I tense up when I walk because it's just not as relaxing as it should be, it's still difficult for me to walk, i.e., I really have to think about what I'm doing and I just tense up :/  I think the surgery slowed down my metabolism or something, anybody else?? 

[Pembo]

Sefra, It is the 10th nerve that causes GI problems, the Vagus nerve. My tumor was stuck to the 5, 7, 8, 10 and 11th nerves.  Before surgery I couldn't eat much. I hadn't had ice cream in more than a year, it always made me sick. In the days after surgery I ate ALOT of ice cream and anything else I wanted and no stomach problems.

[justafactoflife]

Static, that's a good point to compare other symptoms we share, Static. 

Prior to surgery, and as a pre-teen, (I'm now 53) I blew up a firecracker real close to my right ear (not on purpose mind you).  It was the same side as the tumor.  Anyone else do something that dumb that you'd admit to?  Or any loud noise exposure to the side of your tumor ear?

During Vietnam Era, (stateside lucky SOB and I wasn't there) I refired an M-16 rifle just about every year for 7 years during my stint in the US ARMY Reserves and usually without any hearing protection (also dumb).

For 23 years, I was around loud noises during my career jobs. factory work, automotive garages with loud cars etc.  I might add I was exposed to a lot of cancer causing chemicals in the paints and other  items for the automotive industry.  I sold Auto Parts at O'Reilly Auto Parts. 

Cell phones didn't affect my rightsided tumor I don't believe, because I use my left ear exclusively when using it.  Probably because I haven't been able to hear that well in the right ear from my firecracker episode.

As for other symptoms, I have had neck & shoulder pains but related to lifting and rotator cuff not tumor.

I hear an electrical buzz in the ear sometimes.  Just comes and goes real quickly and for no reason. This was true before and after surgery.  ENT thinks it was due to inflamation and swelling of the acoustic nerve.

I lost my balance first before I began noticing my hearing loss.  Doctor thought this was unusual for AN tumor but my tumor grew larger on the balance portion of the nerve more. I did have increasing tinnititus as we did the "Wait and Watch" senario before surgery.

3yrs post-op and to this day, walking, driving, thinking, talking in a complete sentence, short-term memory loss, eyelid droop, fatigue, tinnititus, hearing loss or understanding what I thought I heard are my main symtoms.

[GM]

My guess is that the whistling might have been a form of tinnitus...  It takes many forms, you may have been one of the lucky few that it stopped after your surgery.

I had a "crackling sound" at first...like rolling a piece of plastic wrap between your fingers, followed by strange tones on the touch-tone telephone when I dialed a number (all tones sounded the same...distorted and the same tone).

I originally thought all of this was due to an ear infection.  Growing up my Mom didn't take us to the doctor much...part of the "no blood - no foul generation."  So naturally I tried to self-treat it with cotton.  When I failed my hearing test a few times at work...well then the story changed.

Gary