Possible AN

[garak0410]

Hi!

Over the past two Spring Seasons, I've gotten sore throats that lead to ear infections.  And over the past month or so, I have a ringing in just one ear (left). This year, I decided to go see an ENT for it this time about the sore throat and ringing. We did a hearing test and while good, the left ear showed some hearing loss. The ENT doctor checked my years and they looked good with no infection. About the ringing, he said to come back in September for a follow up and if still ringing, he would schedule an MRI.

So, that said, I did some research and found the info on AN. He has NOT diagnosed me with it.

The ringing may have been here for a while as I've always had some ringing from time to time but only in the past month has it become more noticeable. I really have no signs of dizziness and do not get many headaches. No facial problems and only an occasional time where people ask me to repeat myself because I mumbled or slurred but it is sometimes due to lazy speaking.

The one physical thing I do notice seems to be jaw related. About the area where the jaw meets the "ear area", I sometimes feel dull aches there. One day I inflated my cheeks making my daughter laugh. I felt something near the ear/jaw area that felt like a marble rolling under the skin. I only felt it inside and not by putting my hand on my cheek. This  especially happens in the mornings or after a nap if I had laid on my left side. But after a few "inflates", it goes away and my jaw feels a tad weak. So, I also wonder if the ringing could be TMJ?

Now, 10 years ago, I rode a coaster in Texas called the Titan. It has no loops but it takes a very tight helix upwards at a high speed and I pretty much blacked out on that. I do not think it is related but it is a note.

So, while I "wait", what else can I do to try to see what the cause of the ringing may be? I have a “second opinion” appointment scheduled for July  and I went to my dentist once who said he sees signs of heavy teeth clenching but didn’t immediately order a mouth guard. He said to come back if it continues.

So, wasn’t sure if it was wise to pursue the TMJ possibility, tinnitus, etc?

I am glad to see I am not alone here!
Brian

[Jim Scott]

Hi, Brian - and welcome ~

You present a list of symptoms that could be related to an acoustic neuroma.  Unfortunately, we aren't doctors and cannot 'diagnose' anyone, especially from afar. However, you've certainly been pro-active in seeking the cause of your symptoms (doctor, dentist consultations) and the medical professionals seem to be responding to your inquiries.  As a reading of these forums will show, only an MRI with (gadolinium) 'contrast' will show the doctor if, indeed, you have developed an acoustic neuroma.  I would urge you to ask your doctor, specifically, for an MRI to be ordered just to (hopefully) rule out an AN.  If and when that occurs, please let us know, via a message, here.  Thanks.

Jim

[Lizard]

Brian,
I'd like to echo Jim and welcome you to the forum, and yes go get yourself and MRI with contrast.  Its the only way to be sure.  Funny you talk about the roller coaster though, because I used to love all the carnival, 6 flags, Disney rides and then they began to make me sick..so dizzy and nauseous.  Since the surgery I have rode some rides at Disney World and had much less of a nauseous feeling.  Did still make me have some vertigo after, but it subsided quickly.
Thanks for the story and let us know how things pan out.
Liz

[LisaP]

Hi,

dido with Jim, an MRI with contrast will tell the whole story, since my dx, roller coaster are a no no for me, I still am mastering walking and not bumping into things.  Best wishes and keep us posted.

LisaP

[garak0410]

Well, I am going to get a second opinion. I talked with a friend of mine who is a dentist and he said it sounds like TMJ, since my jaw aches some near my ear and I clinch and grind my teeth at night. We didn't have time to talk about it longer, but I was wondering if that caused ringing in just one ear. My ENT doctor was alarmed about the one ear ringing and didn't even think TMJ. Could it be TMJ? (I see my normal dentist in 2 weeks)

[mk]

While it is true that clenching and grinding the teeth can cause jaw pain (I get this problem occasionally on my non-AN side), I don't think there is anyway that it could cause single-sided tinnitus. You could get a mouth guard (they are available at drug stores) and see if the jaw pain eases.

On the other hand, single-sided trigeminal problems (like pain or numbness) can be tumor related. Even if the tumor originates on a different nerve, as it grows it may press  on the trigeminal nerve and cause symptoms.

I would say that single sided tinnitus or single sided hearing loss, is always a cause for concern - I would say that if your ENT doctor was alarmed, he/she is prepared to take good care of you. Be weary of ENTs who are quick to brush your symptoms off.

Marianna

[Sheryl]

Brian - I've been waiting and watching for almost 9 years on a ninth cranial nerve tumor (like an acoustic which is on the 8th cranial nerve).  In that amount of time it has only grown 4 or so millimeters from 9 mm to 13 mm but lately I've encountered the same symptoms you are describing, and if I didn't know there was a tumor there, wouldn't think anything of it. 

If you feel comfortable with your ENT doc, I would let him know that you are quite concerned and anxious and would prefer to have the MRI sooner so you can put this behind you and enjoy the summer. 

Keep us posted,
Sheryl

[suboo73]

Hi Brian,

Just stopping by to say hi and welcome to the Forum.
I found out about my AN, after my sister was diagnosed and described the same symptoms i had commented about for a long time!

So i am glad you are being proactive.
The good news is that at least ANs are generally slow growing and you have time to go through the diagnosis procedures, if that is the cause.

I can also tell you that after many years of misdiagnosis, i went to a major medical center and ASKED for an MRI.
The hearing tests were inconclusive, so i asked the ENT doc, and told him about my sister. 
He ordered the MRI for my peace of mind, and the rest, as they say, is history.
I am grateful to the doc who ordered the MRI and the fact that we have such tests and machines to help figure out what is going on inside the body.

You will get to the bottom of this soon.  In the meantime, stay strong and keep us updated on your progress.

Sincerely,
Sue

[LisaP]

Hi Brian,

Just checking in since my last reply, anything new, did you convince your doctor to do an MRI? 

LisaP

[garak0410]

Well, I went for a second opinion visit. Same results on the audio test...some mild loss in left ear...doctor said ear canals looked very good and he even did some kind of face tickle test with cotton from a swab to see if I can feel on points on my face. Both him and the audiologist said that in the sound test, I did pass the acoustic neuroma part and that an MRI is optional for me between now and my 6 month follow up. I also have a visit scheduled with the first doctor in September.

So, in the meantime, not sure what to do...I do believe the ringing is in both ears now but more defined in the left ear...if I consentrate, I can hear it in the right ear.

This may be totally unrelated, but I did clean my ears with a swab the other day...I know, we aren't susposed to do that but I have for years, carefully! I barely went in on both ears and  the swap was bloody. Did a check on the net and most say it could be an ear infection. Called my ENT nurse and she scolded me for using the swabs but said that I could have scratched my ear canals. (both ears???) and unless I was draining blood, it was OK. So not sure what is going on there. I have had 1-2 ear infections over the past year or so.

So, somethjng is going on with my ENT...Acoustic Neuorma? Ear Infection? Allergies? No one can tell me and it is frustrating...almost ready go to back to my GP and just talk with him (cheaper than an ENT!)

Suggestions?

[Jim Scott]

Brian ~

Looking into your ears and 'tickling' your face are fine but, unfortunately, neither will detect an acoustic neuroma.  If your ears look clear and you pass the 'tickle test', that's great but doesn't rule out an AN.  I would suggest that you seriously consider the MRI because your symptoms don't seem to be ear-related.  However, I'm not a doctor and of course, I could be wrong.  Not the first time.  The blood on the swab is probably not a big deal, although it is unsettling.  If the ENT declared your ear canal 'looked very good', I fail to understand why you were able to produce blood from poking around with a swab, but again, I'm not a doctor or even a nurse.  More like an orderly, at best, so my opinion can be discounted.   My conclusion is that you should definitely consider asking for an MRI scan to, if nothing else, rule out an acoustic neuroma or any kind of skull-based tumor, just for your own peace of mind and as a way to narrow the possible causes for your ongoing symptoms.  Here's hoping you can get some answers in the next few weeks.  

Jim

[leapyrtwins]

Brian -

while I'm all for second opinions, I think you need a first one before you get a second 

At this point you really don't know what is causing your symptoms.  The only way to definitely diagnose an acoustic neuroma - or rule one out - is with an MRI (preferrably with gadolinium contrast).  I would get that first - and then go from there.

The symptoms you are experiencing may or may not be caused by an AN.  Until you know for sure, you really can't come up with a game plan.

Good luck,

Jan

[suboo73]

Hi Brian,

I am with Jan on this one - and i suppose that is due to my own personal experiences.

Over a 10+ year period, i mainly had fullness in my ear and some hearing loss.  So i went to 2 different local ENTs.
They each did an audiogram and asked me about my family history.  My paternal grandmother had hearing loss, and had a bone-anchored hearing aid, which helped.
Her daughter had hearing loss and facial paralysis.  My dad had hearing loss.  So the ENTs concluded it was 'hereditary' and sent me away.
At the time, i was a preschool teacher and really started having problems hearing the children talk to me - very frustrating.
Then, i became the preschool director, so it was less important and i let it go (again).

It was my sister's 6 month diagnosis, with the contrast MRI, that made me say - whoa, wait a minute - these are the symptoms i have!
My sister called and said, 'I hope you do not have an AN,' but encouraged me to press on.

My 3rd audiogram - inconclusive once again!  That's when i asked for the MRI.
This is just me, but i wanted to rule out the AN.  No surprise when i picked the report and read it myself.

I believe knowledge is power, so that is why i continued my quest.  I was ready to hear whatever the ENT found on the MRI, and i did have insurance to cover the test.

Whatever you choose to do, we are here for you!

Keep posting and let us know how you are doing.

Sincerely,
Sue