Question on Symptoms

[lholl36233]

I recently went to a Hard Rock Cafe for the first time.  Maybe it's my old age or my AN but, the music was a bit loud for me...   

[leapyrtwins]

Hi, Paul -

I'm tuning in a little late here (was out of town for a few days) and haven't had time to read all the other posts - so if I'm basically repeating what everyone else said, my apologies.

IMO from what you are describing you have "classic" symptoms of an AN - if in fact there are "classic" symptoms.  Everyone has a different AN journey, but there are certain commonalities - and it sounds like you may very well have an AN.

The only way to know for sure is to have an MRI with contrast. 

If you need "drugs" to get through the MRI, take them. 

Jan

[MaryBKAriz]

Hi again, 

FYI....My hypersensitivity is in my AN ear. It was there before I had most other symptoms. I kept telling my husband the treble on the stereo did not sound right. That was even before I had the distortion in the cell phone and way before I even knew there was such a thing as AN. I didn't even have tinnitus then. Because the sound has gotten progressively worse in that ear I can look back and see the progression. My AN doctor who specialises in ANs said distortion in the sounds in that ear are common. They can be very annoying making some sounds quite strange.

I am now functionally deaf in that ear but I can still hear, just can't understand words and sounds I do hear.l

The really good news is if you have it, it is not cancer, it grows slowly - in the vast majority of cases, and is treatable. Hopefully, you have something else that is easily fixed, but if not, we all are hanging in there, even with a sense of humor - may I add. Much worse things happen in this world and I figure if this is the worst thing to happen to me, I am one lucky person.

Take crae,

Mary

[cindyj]

Hey Paul,

All sounds so familiar and yes, my symptoms come and go...with the exception of the tinnitus which is there 24/7.  About the MRI, I have another one scheduled for mid August - already have my Valium sitting here ready and waiting.  All you have to do is ask the doc for one...

Take care and let us know what you find out.

Cindy

[Sue]

Yeah, Paul....go with the drugs!  'Cause you gotta do an MRI, with contrast, to find out if you have this brain booger or not.  Simple as that.  I am one of the lucky ones who have no problem with the MRI.  It do find it annoyingly loud however.  Didn't know that MRI's were noisy.  If they get you nicely mellowed out, earplugs in and all of that, you might just sleep through the whole thing!  Gotta do the MRI, Paul. 

Sue in Vancouver USA

[wendysig]

Hi Paul,
Sorry I'm a little late scoming to this thread but welcome to this forum.  As you can see, the people here are ready and willing to help in whatever way we can.  I have to agree with every one.  The symptoms of an AN can waver or come and go, at least in severity.  My hearing has gone up and down a couple of times and been documented by auditiograms, and the tinnitius in my ear changes with the weather, allergies  and the level of stress I'm feeling on a particular day.  Although I do not have claustrophobia, I reqeusted an open MRI because I was feeling anxious about being closed in.  Maybe this type of MRI, along with some Valaium or something would help you.  Wishing  you the best of luck.  I hope you dont' have an AN as it is a lousy diagnosis, but if you do, this is a great place to be for support, information and venting when you need to.  We are here to support you in whatever way we can.

Wendy

[Gloriann]

The only symptom I had for 25 years was hearing loss on one side only. Then I began to have facial twitches around my eye on that side, and these would come and go. They started one evening in summer and continued almost daily, then became less frequent as the next two years went by, before an MRI revealed my tumor.
Other symptoms I had that would come and go included: eyelid swelled for about 2 weeks at a time, go away for a couple of weeks, then swell up again. I would become off balance at times while walking and get nauseated with a headache. I also began to have pains in my left jaw, mostly at night. A coupe of times the pain was almost unbearable when I opened my mouth wide (like in doctors office one time). I also had a metal taste in my mouth for awhile, then it went away. Close to the time when I finally had the MRI done I was having headaches waking me up around 4am daily. When I got out of bed the headaches gradually went away.
 My brainstem was bent and this is why I got off balance while walking.
One symptom I did have that was constant (besides the hearing loss and ringing in ears) was a numbness in the eyeball on that left side. I found out that my eyeball was numb when I was putting some eye drops in it one day and it ran all down my cheeks.  I was also having a problem seeing out of that eye at the time.

[LisaP]

Hi,

I'm a new member and newly diagnosed, yes symptoms come and go.

LisaP

[Paul2]

Update for all of you on Paul.  The ENT called and said "he thinks he may have Meniere's disease" so wants to put off the MRI for now and try a diuretic for a month to see if it helps the symptoms.  This sounds so stupid to me.  Paul is frustrated because he has heard of people who take diuretics that don't need them and it messes up their electrolytes.  The doctor is basing his diagnosis after reviewing a hearing test from a few years ago.  He said that Paul's hearing has improved some and that Meniere's disease is the only vestibular problem that has fluctuating hearing loss.  He said there's no test for Meniere's so he wants to try and treat it first before doing an MRI.  Does this make sense to anyone or should we go for a second opinion?  What do you all think based on Paul's symptoms that come and go?

Thanks!
Lynne

[leapyrtwins]

Lynne -

I don't know much about Meniere's disease, just that the symptoms are very similar to acoustic neuroma symptoms.

Hopefully others on the forum will know more than I do and will respond soon.  Have you done an internet search on Meniere's?  You might be able to find out more information about it.

Jan

[Omaschwannoma]

I looked into meniere's some time ago as that was "thrown out" as a possibility for my symptoms, as was hydrops by one ENT.  Not knowing about meniere's I looked into it and came across the treatments.  From the many articles I read on diuretics, low salt (really low salt) diets prescribed for the treatment don't seem to help with MD, it's controversial. 

I don't understand why the doctor doesn't just go for the MRI to rule out AN.  Probably an insurance thing or he's being conservative in his approach to your symptoms which can be frustrating to the patient as it can be a slower process to a real diagnosis. 

If your gut is telling you to seek another opinion then perhaps you should listen?  But, if it is an AN remember they are slow growing so there's really no need to hurry for the diagnosis and if he has the patience to proceed with a more conservative approach perhaps he can grin and bear it?  I do understand the concern on his part if he suspects at all that it is an AN as it can be frightening. 

In regards to taking diuretics and electrolyte imbalance, there are foods you can eat/drink to help with this so you can control it. 

Good luck and let us know how he has decided. 

[MaryBKAriz]

Hi,

The doctor may be correct and I hope he is. However, my hearing test was fine 15 months ago, now I am functionally deaf in my right ear. The hearing does fluctuate. As I see it, it doesn't hurt to get a second opinion. With complex symptoms like these, it seems an MRI with contrast would at least help pare down the possibilities.

Good luck,

Mary

[GRACE1]

I underwent an open MRI for the initial diagnosis of my AN.  The open MRI is a total breeze for me compared to the 2-3 "closed" MRIs I've had so far.  Do you have trouble with open MRIs?

The suggestion to try to use the phone on the affected ear is right on.  I always answered the phone using my left ear, so it came as a total shock to me that I could not understand anything on the phone with my right ear after I was diagnosed.

Please go with your feelings about not putting off the MRI - you need it now.  Also, a second opinion would be wise.

Good luck!!!

[Tamara]

Regarding fluctuating hearing tests -
  In February I scored a whopping 12% word recognition on my AN ear.  Shortly before my surgery, I scored a 40%.  I just think the second tester had a lot better diction...

  Aside from the hearing loss, I had tinnitis and fullness that would come and go.  I am sensitive to noise in my good ear, and am always the one saying "can we turn that thing DOWN??"

  One very unusual side effect of my surgery is that the tinnitis is very diminished or possibly gone.  One time it's good to be rare..apparently that doesn't usually happen...

best wishes,
Tammy

[LisaP]

Hi Paul

I still think that you should have an MRI done, if it was not for my primary care doctor, she was the one who sent me to an ENT because my doctor also wanted to know why I was having symptoms.  You have to be your own voice and if you feel that you need another MRI then tell them.

Still a newbie

LisaP