Thoughts?

[HarryC]

Hello, everyone.

I'd like to give you my history (trying to be brief) and see if anyone has any thoughts...

In 2005 my right ear seemed to have decreasing hearing. I went for a hearing test, was given an ABR and an MRI. The audiologist suspected an AN and the MRI (without contrast) showed nothing. I used a hearing aid until 2009 when it just didn't seem to be working. Another test showed my left ear virtually unchanged, with decrease in my right ear. The audiologist wanted another MRI done. My doctor said that it wasn't necessary, since I'd already had one, and that neuromas don't "work that way" - if it wasn't there in 2005, it wouldn't be in 2009. The ENT said that it wasn't an AN since I had no facial weakness on my right-side and said an MRI was not necessary.

I feel my hearing has been worsening over time, and I have worsening balance. It's not particularly problematic, but I can't do the "one foot in front of the other walk" anymore. One morning in Dec 2010 I woke up and my right ear felt plugged. It was like that all day and around 9 pm suddenly everything became very loud in that ear. It was just as distorted, but everything was booming. The TV was far too loud, my own voice was painful and when I went to bed, the sound of my ear moving across the pillow was deafening. I woke up the next morning with absolutely no hearing in the right ear. A couple of days later I got a little bit back, but very little. My tinnitus in that ear is incredibly loud - sounds like a jet engine constantly.

I went for a hearing test 2 weeks ago and my rt ear is worse as I suspected. My speech discrimination was 48% in 2005, 36% in 2009 and is now 0%. I can't understand anything in my rt. ear, but then I can barely hear anything in it, either. My audiologist said that I MUST have another MRI and he won't let this go. I met with my family Dr. who says there's nothing to be gained by an MRI. He did refer me to the ENT, who I haven't met with yet.

It was suspected to be Meniere's in 2009, but I have never had any issues with dizziness or vertigo. Diet changes don't seem to affect anything any my hearing is not fluctuating, except for gradual worsening, and that one instance last Dec. which my hearing hasn't recovered from.

I really don't think it is an AN - I have no facial problems, and I'm not particularly worried about it being an AN. But, what would cause the continual worsening of the hearing? Should I insist on an MRI just to rule it out? I didn't have contrast last time, but they said that they could see the auditory canal and nerve and that it was fine.

I'm not really sure what to do from this point, and what I should discuss with the ENT. Do I push for more tests? (MRI? ABR? anything else?) Do I just let the hearing fade away and hope that my left ear continues to be unchanged? My hearing loss in the rt ear originally started from a loud blast in the ear, but after that it seemed stable, and took about 3 years for it to start worsening.

I've attached an audiogram I created to show the progression. It takes the 3 that I have and just combines them into one.

[CHD63]

Hi Harry and welcome to this forum .....

Your post troubles me mainly because of apparently two doctors telling you another MRI was unnecessary.  It is true that medium to large ANs usually are visible to some extent on an MRI without contrast (note:  I am not a medical doctor).  However, it is well-known by those of us on this forum that the only way to definitively diagnosis a small AN is with an MRI with contrast.

Perhaps I am overreacting to this, but I had a similar experience.  When I first developed symptoms (in my case it was the feeling of disorientation and pronounced nystagmus), the first MRI was mistakenly ordered without contrast and, of course, came back read as negative for AN.  My hearing was fine at the time so it was chalked up to inflammation of the inner ear.  About 10 months later, my hearing suddenly diminished in my left ear, no tinnitus or hyperacussis (the hypersensitivity to loud noise) in my case at the time.  I did not do anything about it for a couple of months, thinking it was sinus or fluid behind the eardrum, etc.  When it did not clear up, I mentioned it to my PCP, who sent me to an ENT.  The ENT immediately ordered another MRI (this time with contrast) and lo and behold, there was a 2.0+cm acoustic neuroma (considered medium in size).  When I had my consultation with the neurosurgeon prior to surgery, I took both MRIs with me.  He studied both for a very long time, saying "I should be able to at least see a shadow of the AN on the first MRI (done without contrast), but I cannot."  His determination was that I had one of the rare rapidly growing types of ANs and that is why he could not see any small AN without contrast material.

Many of us have learned through our journeys with ANs, that we have had to become our own advocates when it comes to medical care.  This is not saying you sound like you have an AN, I am only saying you deserve to know (through an MRI with contrast) whether you do or not.  There are other conditions that can present with the symptoms you are having, but you need to know that it is not an AN.  My vote would be to press for an MRI with contrast as much can change in four years time.

Best wishes and please let us know how this plays out!

Clarice

[Jim Scott]

Hi, Harry - and welcome.

As you know, we're not physicians and cannot diagnose anyone but your symptoms are certainly problematic, specifically the unilateral hearing loss.  I can only offer what I would do, if I were in your situation.  I would ask for the MRI.  Insist on it, if necessary, as a way to rule out an acoustic neuroma.  Upon diagnosis, I had developed a large AN that was pressing hard on my brainstem (the neurosurgeon I consulted was visibly alarmed by the size of the tumor) yet I had no noticeable facial weakness, although I did have balance problems and my hearing on the 'AN side' had decreased, like yours, to zero.   You may have some other auditory issue that is causing your SSD but the MRI will definitely rule an acoustic neuromas in or out as the cause.  If it isn't an acoustic neuroma, your doctors can look elsewhere for the problem but if it is an acoustic neuroma, the sooner you know, the sooner you can address it before more damage is done.

Jim

[mk]

Hi Harry and welcome,

Clarice and Jim made very good points. There are two things I wanted to add. Facial problems are NOT the norm when having an AN. The facial nerve stretches and is very resilient. Usually the problems appear after a surgical AN removal. So please don't have anyone tell you that "because you don't have facial problems it is not an AN".

Secondly, your sudden hearing loss could be reversed with steroids if taken soon enough. I am surprised that your ENT didn't prescribe a dose of steroids to see if there will be a response.

As Clarice pointed out, we have heard too many times in this forum of small ANs being missed in MRIs taken without contrast. Small ANs may cause big symptoms, and vice versa, so having lots of symptoms doesn't necessarily mean that you have a large AN. My (non medical) opinion is that you should request an MRI with contrast.

Marianna

[rupert]

 Hello Harry,  
              When I started having serious hearing loss my family doc immediately referred me to an ENT who immediately ordered an MRI with contrast.
I cannot understand why your doc would be so reluctant.  MRI's are one of the best tools available today for diagnoses of many things.   I agree with the others
that the only way to know for sure if you have an AN is to have an MRI with contrast.  
              I'm sorry about your hearing loss,  and as for your ENT to say you don't have an AN because there are no facial problems!  To me that is
absurd.   How would he know,   he really doesn't,  he is just going off the old MRI.   I think you have to be your own advocate here.   You may or may not have an AN,  but you are definitely having some problems and your doc's should be exhausting all possibilities looking for answers.  A lot can change in five or six years,  another MRI will at least  confirm or rule out an AN.   Then go from there.   I had better quit there before I get myself in trouble,  like saying your doc's sound a little stubborn to me.
            

[leapyrtwins]

I'm not a doctor, but I can say with confidence that you may or may not have an acoustic neuroma.  Lots of people have symptoms that are relevant to ANs, but not all of these people actually have an AN.

Usually an MRI done on a quality machine - even without contrast - will pick up an AN.  You could have an AN that was too tiny to be picked up without contrast, but the odds of that are pretty slim.

If it were me, and keep in mind that I'm a worrier, I'd insist on an MRI with contrast.  It can't hurt and it should answer the question for you once and for all. 

Good luck and please keep us posted.

Jan

[HarryC]

Many thanks to everyone for your great advice.

I'm not worried that it's an AN, and doubt it is. But, I would like to exhaust the study and know for sure it's not, rather than be pretty sure it's not. I just don't want to be too pushy and insist on the MRI if it's not necessary. Your reponses convince me that I do need to advocate on my own behalf and insist upon it. This is basically the advice that the audiologist said, and I was looking for other input. Interestingly enough, he's convinced that something sinister is at work, that it's a "retrocochlear" problem and that it needs an MRI. And maybe I'll be fortunate, have the MRI with contrast, and learn that it's not an AN. But you are all correct - I need to know this for sure.

I'll keep you posted. I don't have the appointment with the ENT yet, so I'll call him and see when that's going to be scheduled, and insist on the MRI when I see him.

Thanks again. I appreciate your advice and support!

[Kaybo]

Better safe than sorry!!  I always like to know EXACTLY what I am dealing with...or in your case (hopefully) what you are NOT dealing with!

Keep us posted!

K   

[deheisel11]

I just wanted to emphasize what Marianna had mentioned about the use of steroids to help with sudden onset deafness.  It is amazing how many doctors, including ENTs, do not suggest steroids.  Four years ago, my wife got extremely ill. In one day she went from normal hearing to total deafness in her right ear.  The ER doctor nor the ENT "who could see her in one week" did not suggest steroids.  She really researched the subject and read that steroids within 72 hours was beneficial in bringing the hearing back.  Luckily because 2years later the same thing happened to her left ear.  Again the ENT said "he could see her in a week".  She called another ENT and demanded to be seen that day.  He injected steroids through her ear drum and her hearing came back.  I am amazed that more docs do not know this. Strongly advocate for yourself.

[Syl]

Harry:

Keep going back to the doctor. Change dorctors if necessary. Whatever is causing your hearing loss needs to be dealt with. I hope it's nothing more than hearing loss, but please don't give up until you have an answer.

Syl

[leapyrtwins]

Harry -

it's important to note that sometimes hearing loss has no reason behind it.  Unfortunately lots of people lose their hearing and their docs are stumped as to why it happens.

I'm with Syl, you definitely need to pursue this issue, but don't be surprised if in the long run no one can give you a definitive reason as to why you are experiencing a loss.

Jan

[tenai98]

to keep my story short (as I'm on vacation), my firsr ENT said hearing loss due to old age...was only 47 at the time...lost of hearing in one ear, ear felt full and some very very minor balance issues that I only noticed.  went for a second opinion. This ENT did an MRI with contrast. and Voila, there is Mr. Booger.
JO

[suboo73]

Harry,

I am no doc either, so i can only tell you my experiences...
Gradual hearing loss & went to ENT - inclusive hearing exam.
I did this twice in about 7 year span.

Then my sister was diagnosed with an AN.  I said "WHAT?!"
Nobody ever ordered an MRI for me.  I left my local town and went to a major medical center.
Asked for the MRI with contrast and the doc said i will write the script.

This is just me, i like all the information i can get, and i too believe you have to be your own advocate.

Please keep us updated on your progress. 
Prayers all around that you find the answers you are looking for.

Sincerely,
Sue

[HarryC]

Thank you so much, everyone, for your replies. I finally heard from the ENT and have an appointment in early April. They're going to get the old MRI results for the appointment and I'll see what we can do about getting a new one, if only to decisively say "yep, it's all ok". I'll keep you posted!

[HeadCase2]

Hello Harry,
  I think you're on the right track trying to have them send you for another MRI, this time with contrast.  If the doctor doesn't think it's needed, ask them if they can definitively explain the severe degradation of hearing on one side since the last MRI.
  Statistically speaking, you probably don't have an AN.  But the MRI with contrast will either confirm AN, or rule it out so the doctors can look for other causes.  Good luck to you.
Regards,
  Rob