Symptoms - Are they NORMAL and is there ANY Relief

[AskingForDad]

Hi everyone,

I’m doing my very first post ever on a discussion site.  I'm writing for my Dad - who was diagnosed with AN In July  2008  and had his second  MRI in Nov 08 which did not show any growth.  So he is on the Wait and Watch plan.  He is 75, but very healthy otherwise and very active - he has been the Mayor of his small town for the past 8 years and very much involved with the Community and business.  But the symptoms are kind of wiping him out AND worrying him.

He is hoping to first of all see if his symptoms are ‘normal’ – he is a little worried that maybe he has MORE than just AN?

AND he is looking to see if anybody has any recommendations to help RELIEVE the symptoms.
 
His Symptoms:

His right ear is the ear that is losing the hearing.  But has sound in this ear pretty much all of the time - a ringing, a hissing, or fizzling or crackiling.  It’s manageable for him when its low in tone, but It gets very intense for short periods, maybe 20 times a day.  When it intensifies, his eyes get tired, his head feels funny, his equilibrium is more out of balance than normal, and he FEELS like if he looks up he won't be able to focus his eyes - but when he actually DOES look up it is not a problem, he can focus ok.  He does NOT have any dizziness.

He also has a sensation in the left side of his mouth.  Like he can hear his jaw moving, and can hear his swallowing, things crackle, he can hear a crick in his neck.  His ears fell like they are going to pop as when going up in an airplane.  He feels tired.
 
Loud noises or places also cause the symptoms to intensify.  Sometimes he gets the ringing in his other ear – the left one – but that is usually not too bad.  Its just the 20 or so ZAPS a day, I think, that are wiping him out
 
He hasn't yet gotten an answer as to what causes the intensification - if the tumor pressing on his nerves is the cause of the normal symptoms, what causes the extra flareups - does the tumor swell and press harder, and then shrink back down again?

Is there ANYTHING he can do to RELIEVE the symptoms?  When he first went to the Dr he was diagnosed with Menierre’s disease and went with the no salt, no caffeine, high water, no alcohol regimen for awhile and that didn’t help much.  When they found the AN – he was glad he could go off the diuretic, use his regular pancake mix, and have his nightly cocktail again– but so far that’s been the only bright spot.
 
Thanks for listening.   

[Sue]

Hi,

Welcome to the Forum.  There are others on here who will no doubt answer this better than me, but I'll have a go at some of your questions for your dad.

First of all, when something is growing on nerves, any number of weird sensations can ensue.  He has tinnitus which is a very common symptom of an AN.  This can be a wide variety of noises and can be loud or soft and that can vary during the day depending on what you are doing, what you are eating or drinking (for some) or where you are at.  Sometimes moving the eyes can intensify the sound.  Usually it isn't that much difference, but everyone is a little bit different. Sometimes an AN can affect eyesight. Some people on here have tinnitus in their other ear also. Why this is, I don't know. This should be addressed by a doctor, of course.  When the facial nerve is involved this can cause numbness of the face and also affect the inside of your mouth, and part of your tongue.  You can get a salty taste and sometimes an unpleasant metallic taste.  Almost everyone has had some "fullness in the ear", and why this happens I don't really know, but it's one of the symptoms.  I had that as my second symptom after the tinnitus started up.  It's highly irritating and I was very glad when that went away for me.   He is tired because his brain is working overtime to compensate for the balance problems that he has.   He might read this great article on how the balance system works.  I found it very illuminating.  I had some of these symptoms long before I knew I had an AN. 

http://www.hearinglosshelp.com/articles/balancesystem.htm

Why he has the intermittent symptoms flaring during the day, I'm not sure.  It's unlikely that the tumor is pulsating in size as that doesn't seem to be the nature of the beast.  I would presume to think that it's just the nerve itself doing it's own unique strange thing that nerves are wont to do.   Your dad can contact a Tinnitus Clinic (for instance there is one in Portland, OR at Oregon Health and Sciences  University) and they might be able to help him, but usually it's a matter of learning how to cope with it.   Sometimes laying off of caffeine, salt, aspirin and staying away from noisy places helps.

I'm sorry he's having so much trouble.  I hope somebody else will chime in here with what they think is going on with the jaw stuff. 

Take care,

Sue in Vancouver WA USA

[sgerrard]

I think all the symptoms fall into the category of normal for an AN, however strange they may sound to the rest of the world. Hearing buzzing noises (I have the cricket sound myself), ear pressure or a "feeling of fullness", a slight balance issue, fatigue - nothing unusual there. I also hear some pretty odd pops and squeaks from time to time. Ibuprofen helps for me, but not for everyone.

So tell your dad is he is a perfectly normal AN patient, and is not alone. 

I hope he finds something to make the going a little easier.

Steve

[suboo73]

Hi!  I am searching for my own answers to questions such as you asked, being on my first 6 months of Watch & Wait.  Keeping reading and researching.  You can search on this site on the main page or in the various categories. -  Since I had been misdiagnosed for 12+ years, I just started doing some things naturally - I have hearing loss, so I would try to concentrate more on people's faces when they are talking to me, avoid loud places and loud music, sit on a certain side of the room during meetings, etc.  I don't like the ringing in my ears - i usually notice that when it is really quiet around me.  Maybe your dad can make note of what he is doing when the sound intensifies and see if he can modify that to help. 

I know this is very frustrating for your Dad.  And i think it wonderful that you are helping him do research!!

I am so glad you found this website!  There are so many wonderful folks here!
I hope your Dad finds some relief and can continue his active lifestyle.  When i am 'feeling blue' i try to remember that my mom is 80 years young now, and still working part-time!

Take care.
Sue

[Cheryl R]

Hello.  That has to be a very frustrating for your dad to put up with all his symptoms.         Any other issue would show up in the MRI.        We really all do vary in our symptoms and his do not sound unusual.       Tumor location is part of this.       I am also wondering but do not know if I entirely right that an older person may have some aging in the brain and blood supply and that may make some difference from some of us a little younger ones.     His symptoms are the same as ours but show up in a bit of a different way.   Something to ask his dr.                 I have had ANs on both sides with more than one surgery so have NF2.       I have had a variance in my tinnitis.        Is one way for a while and then changes.     I had a period of a few weeks with a sudden very loud crescendo which happened  a few times a day and about drove me nuts.    I was very glad when it quit.     My surgeon was not surprised over it.   
Wish we had some better answers for you.                     Cheryl R

[Jim Scott]

Hi:

I'm not a doctor but I agree with Steve (sgerrard) that your father's symptoms seem pretty close to what is 'normal' for AN patients.  The symptoms are naturally new to him and can certainly be disorienting and frightening.  Because we usually call an acoustic neuroma a 'brain tumor', the anxiety over the weird things happening to the patient (your dad) is understandable.  The tinnitus is practically a given with acoustic neuroma and while maddening, is physically harmless.  I won't speculate on the cause for his every symptom or attempt to explain them but he should certainly stay in touch with his doctor.  I can only hope and will pray that your dad finds relief and some peace of mind very soon.

Jim

[leapyrtwins]

As other have said, the symptoms you are describing are very normal for ANs.

I wish I had some ideas for your dad as far as finding relief goes, but unfortunately I don't.

Best of luck to him though.

Jan

[AskingForDad]

Thanks all.  I read your responses to my dad (he’s not an internet guy – not YET anyway.)  He was glad to hear that you think he’s ‘normal’ –  (he probably never heard those words – ‘you’re normal’ --from many of us who actually know him.)  So as he continues to be a little strange in other areas, we’re glad his AN symptoms at least seem normal.

Sue – the article you included was very helpful.  It was good for my dad to hear some science behind some of the things he was experiencing.  It really shows how amazing our bodies are made – but also shows very clearly what can happen if damage sets in.  It helped to make some of the symptoms a little less mysterious.

He’s definitely been coping better after the second MRI showed no growth and alleviated at least some of the nagging worry.  But he had been misdiagnosed - almost until it was too late- when he had colon cancer about 20 years ago, and I think that is still kind of lingering on his mind some.

And he likes to TALK (and listen….sometimes, anyway).  And it is just very disorienting when the ringing kicks into high gear in the middle of a conversation or speech.  (I’m trying to convince him that if he talks a little LESS– it might lower the probability of an attack during a conversation- but that usually lands on his deafer ear)

So for now I’m going to keep reading and researching like you suggested Suboo73,  It’s great to know there is a community here willing to listen and offer help.

Thanks,
Kathy

[LisaP]

Hi Asking for Dad,

I'm a newbie also, going for my third MRI on Wed, Feb 4th in Boston.  I have symptoms daily from headaches, blurred vision at times, dizziness, pulling sensations on my right side of my face an neck, ringing in ear, ear pain, ect ect ect.  Welcome to the forum, it's a great place, ask and ask all kinds of questions and yes I believe what your father is experiencing is normal for an
AN. 

LisaP