Survey Of Balance Issue vs Hearing Issue

[yardtick]

Yes I get that stabbing pain in my ear also. 

[mindyandy]

Irene, yes I sometimes get stabbing pains on my AN side that come and go. Not fun. I'm sure you will see as people reply that your not alone.

[Omaschwannoma]

Balance - 7

Hearing - 3

Other - 5
matti is in this category as not sure which came first "earfullness or balance", maybe together, but it was "facial" issues that brought about dx.
I'm putting goinbatty here because mentioned memory loss.
evelia experienced fatigue and balance not sure which came first so put in this column.
dantheman had earblockage and balance, not sure which came first.

Summary:
So far I have put those that have mentioned, ear/balance, at the same time in "other" column until clarified.  "evelia" and "dantheman" respond if your recall can clairify better heading to be under.
As you know I'm trying to put together a compilation of symptoms experienced before the official dx in hopes of passing this information on to doctor/s to better inform them.  This in turn will hopefully get a dx sooner before permanent damage is done.  I appreciate everyone's help so far and if you suddenly remember something and want to change please do so. 

[firewalker]

This is great that you're collecting this info. I'm pre-treatment and will have a translab at the end of Jan08. I started complaining about hearing loss and fullness in my right ear, vertigo and headaches 18 years ago (1989). Over the years and several audiologists, I finally was fitted with bilateral over the ear hearing aids and was continually told that my hearing loss was the result of deteriorating nerve damage. My right ear was far worse than the left and continued to decline over the years. Every time I saw a new audiologist, I would comment that it seemed like something was deep within my ear and that it even sometimes felt like the beginnings of an ear ache. I was always told that everything was normal and was never considered for an MRI.

Well, last Nov07 I had one of my severe migranes that sent me to the ER because I couldn't stop vomitting and was dehydrated. This time, they took a CT (because of the violent vomitting) and found something suspicious and said to follow-up with an MRI. They made it sound like it probably was just a defect in the scan, so I put it off until I started having balance problems. I kept walking into door frames and felt unsteady on my feet. It got to the point that even while standing still that I would fall to the left and when making sudden turns I'd lose my balance on a regular basis (everyday). Between the headaches and the balance issues I decided to finally see a neurologist in Oct. Beginning of new story, I was diagnosed with AN in my right ear which currently only has 10% useable hearing.

I'm really glad that I finally have an answer to why my body is acting the way it is, and I believe my hearing could have been spared if only they had been educated as to the early signs of AN.

Thanks for collecting this important info. Please keep us posted with your results.
~Firewalker

[lori67]

What I thought was my first symptom was about 6 months before my diagnosis.  I had facial numbness on one side.  No hearing loss at all.

After my AN was found last January and I started to read about the different symptoms, I can look back and see that I actually had some subtle things that were probably a result of the AN.  About 15 years ago, I started having sinus problems, but I had just moved to a new state with new things to be allergic to, so I was put on allergy medicine and just learned to live with the headaches that came every time it rained out.  That's about when my insomnia started also, but I chalked that up to having kids and being a light sleeper because I needed to be able to hear them during the night.  A few years ago, I signed up for a yoga class and just thought I was a clutz because every time I had to do anything requiring balancing on one foot - I'd nearly take out half the class!  Same thing as far as the occasional bouncing off walls and furniture - just getting older and in too much of a hurry most of the time.  It seemed a little strange since I was a gymnast when I was in high school and was pretty good at the balance beam and now I couldn't even stand on one foot on the floor!  I guess I thought it was normal and happened to everyone.  Now I know there is a very good reason I was a clutz all those years - and I think everyone in that yoga class has recovered from their injuries!

[Dana]

Balance was definitely my first symptom.  I started having problems in 2001.  At the time my late husband was in hospital (to have another kind of benign brain tumor removed), and I was 'living' at the hospital 2+ hours from my home.  So I just figured the balance problem was caused by stress.

I kept telling docs re my balance problem, although it wasn't horrible, just annoying.

But it wasn't until my hearing started to go that any tests were done.  Tests resulted in AN diagnosis June 2007.

Dana

[Omaschwannoma]

Update:

Balance - 8

Hearing - 4

Other - 5

Some of these are difficult to place in one category when the symptoms happen to be all three at once, so I put those in the "hearing" column as it was an ENT visit that set the ball rolling.  Don't know if this will work or not.  But keep sending in your symptoms, thanks.

[juliotamu]

Hello,

In my case I can say for certain that the first symtom was a large reduction in hearing in my right ear that occured August 2001 (over 3 years prior to diagnosis of acoustic neuroma). The ear seemed clogged up and I had a cold so I assumed it was from that. I was prescribed antibiotics which did'nt help so I decided there was nothing else they could do. I continued to work and drive with no problems until May 2004 when I noticed the right side of my face started feeling numb and my right eye felt like something was in it. Then I saw an ear doctor who said it sounded like an acoustic neuroma but I put off the prescribed MRI since I had no insurance. November 2004 I collapsed when a blood vessel broke due to the tumor. I was taken to the ER and diagnosed after a CT scan with an acoustic neuroma. Ever since Nov 2004 I've been dizzy to some extent, even more so after most of the acoustic neuroma was removed March 2005. Obtained SSI July 2007. Could'nt get standard SS disability due to provision in law that you have to work 5 of last 10 years, even thouigh I worked for 18 years. Seems I spent too much time in school. I was one year away from PhD when diagnosed.

[linnilue]

My first symptom was wierd imabalance issues, which I dismissed.  Followed by horrible bouts of irretractable nausea and a few episodes of some very strange and dangerous vertigo situations especially in the shower, I just couldn't get a grip.  But the real kicker in gettting dianosed was the visual migraine without a headache.  I had great hearing.  However,  I lost my hearing 4 months after radiation.    I hopw this helps, becasue I'm with you, I think there is alot for doctors and all of us to learn.  I learn from this forum all the time, there are so many well educated and helpful people with great answers and great insite.  Holly

[Omaschwannoma]

Thank you all and keep this going.  I'll be back in a while to do an "updated" count.

[er]

It has been so long ago my husband said I was more tired before my balance,
 before everything  any time I layed down on my bad side it felt like I had a pimple in the back of the ear that hurt alot when I put pressure.
eve

[Jackie]

Good Morning

Hope you all had a nice Turkey day! I'm too tired to shop so, just kicking back! Just wanted to add my two cents. My symptoms began with first a diagnosis of swimmers ear, which cleared up with drops, but the Tinnitis, and fullness feeling and noticeable loss of hearing continued. I was referred to an  ENT who suspected a possible AN, and within two weeks the MRI confirmed the suspicions. As it turns out the Swimmers ear had nothing to do with the real problem, but helped draw attention to the urgency to find the problem!
Jackie

Guess I was "lucky" it didn't take months or years to find the problem, and I am sorry for those of you that had to endure all that suffering!

[yenna]

Hi, I'm a total newbie to forums and hope I am doing this right...First of all I am "So Happy" to find this group! I have a 2.5cm left AN, diagnosed 8/07. My past history is I have had bouts w/ migranes, clutzyness since my 20's. I am 45. My first head CT was in my 20's...no tumor but I did have a allergic recation to the dye used. I have had intermittent bouts w/ vertigo (but mainly while Jet Skiing or Snow skiing/ Snow skiing is not an option any longer is was so bad).

Aprox. 1 yr+ b/4 the AN was found, I was in for a routine eye exam and my optic nerves were swollen. I was sent to an opthomologist/neuro. who ordered a CT w/out contrast...no tumor was found and I was diagonosed w/ "Psuedo Tumor Cerebri" (false tumor). I went through a spinal tap, diuretics & multiple field vision tests, was told to loose wieght!

Then in July I thought I had a wax blockage and tried the warm water ear syringe a few different times w/ no luck the after a couple weeks the ringing started which made me call my GP. She said the ear was clear & sent me to an Audiologist who found hearing loss on that side and sent me to an ENT. The ENT ordered the MRI w/ contrast and the AN was found. The tumor was not psuedo! If I had had the CT w/ contrast or the MRI a year+ earlier I would still have hearing & no tinetus (my balance I have been told is totally gone on that side).

I have a question for the group re: radiation and where FRS is available and who DR wise is good to ask for? I have seen about 5 or 6 Dr's and think I am leaning in the direction? My last visit ws to Dr William Friedman @ Shands in Gainesville FL, he dose not do fractioned. I lost my dad the end of Sept and that sent my world into a whole other direction... but I need to get back refocused on diciding what to do next? I was considering Pittsburg, Mayo in Jacksonville & Johns Hopkins? but then I found this forum so any help is appreciated...

Phyl, if you read this it may need to be placed elsewhere??  Thanks

[ppearl214]

yenna, hi and welcome.  Will start a new thread for you here in "Inquiries" so this doesn't get buried..... hang in there!
Phyl

Hi, I'm a total newbie to forums and hope I am doing this right...First of all I am "So Happy" to find this group! I have a 2.5cm left AN, diagnosed 8/07. My past history is I have had bouts w/ migranes, clutzyness since my 20's. I am 45. My first head CT was in my 20's...no tumor but I did have a allergic recation to the dye used. I have had intermittent bouts w/ vertigo (but mainly while Jet Skiing or Snow skiing/ Snow skiing is not an option any longer is was so bad).

Aprox. 1 yr+ b/4 the AN was found, I was in for a routine eye exam and my optic nerves were swollen. I was sent to an opthomologist/neuro. who ordered a CT w/out contrast...no tumor was found and I was diagonosed w/ "Psuedo Tumor Cerebri" (false tumor). I went through a spinal tap, diuretics & multiple field vision tests, was told to loose wieght!

Then in July I thought I had a wax blockage and tried the warm water ear syringe a few different times w/ no luck the after a couple weeks the ringing started which made me call my GP. She said the ear was clear & sent me to an Audiologist who found hearing loss on that side and sent me to an ENT. The ENT ordered the MRI w/ contrast and the AN was found. The tumor was not psuedo! If I had had the CT w/ contrast or the MRI a year+ earlier I would still have hearing & no tinetus (my balance I have been told is totally gone on that side).

I have a question for the group re: radiation and where FRS is available and who DR wise is good to ask for? I have seen about 5 or 6 Dr's and think I am leaning in the direction? My last visit ws to Dr William Friedman @ Shands in Gainesville FL, he dose not do fractioned. I lost my dad the end of Sept and that sent my world into a whole other direction... but I need to get back refocused on diciding what to do next? I was considering Pittsburg, Mayo in Jacksonville & Johns Hopkins? but then I found this forum so any help is appreciated...

Phyl, if you read this it may need to be placed elsewhere??  Thanks

[er]

Hello Yenna,

My prayers are with you. I'm in Oregon so I can not help you in the sence of Doctor's but I'm here for any comfort I also lost my dad this Oct. 2 the day before my middles sons birthday and I also took it pretty hard but I had also lost grandma on the 3 of Sept. and a good friend on Nov. the 3rd  So I know how you feel. Good luck on your journey
eve