I failed my ARB!

[Robertnyc]

Hi everyone...what a wonderful site!
I'm a 55 year old man from NYC. I may or may not have an AN; too soon to tell. The only symptom I have is FULLNESS in BOTH EARS EQUALLY for 4 months. No hearing loss (hearing tests fine.) No imbalance. No tinnitis. No facial numbness. Nothing but a "fullness" in both ears. In the "off shot" that there may be something else going on, my ENT ordered an ABR...which came back abnormal (to her surprise!) Next Tuesday I go for an MRI with contrast, to see what's going on. An AN is suspected (due to the "Wave V delays" on my ABR). My concerns are these: this ABR is the only abnormal test I've had; hearing tests, ECoG, CT scan of my sinuses all okay. How reliable is this ABR test? Has anyone every failed one and NOT have an AN? If I do have an AN, shouldn't I be having more symptoms? Can ear fullness in both ears be due to something else? (I've tried EVERYTHING to relieve it!) Thanks, all, you look like a lovely bunch!

[lori67]

Hi Robert!  And yes, we are a lovely bunch!   

As you'll see if you get a chance to poke around the site, "normal" symptoms of an AN are anything but normal.  Some people have lots of symptoms before diagnosis and some, like me, had a little bit of facial numbness and that's it.  It basically comes down to location, location, location.  Wherever that tumor decided to make itself at home in there depends on what crazy symptoms you can have.

I have to say, though, I've never heard of anyone having issues with both ears at once.  That doesn't mean it hasn't happened, just that I've never heard of it.  I've also never heard of doing the ABR before the MRI, but I suppose all doctors do things his or her own way.  I think getting the MRI with contrast definitely needs to be done to at least rule out an AN - yes the fullness in your ears can be caused by something else, but it's always a good idea to be able to at least narrow down the choices.

Good luck on Tuesday and make sure you let us know how it turns out!  I'll be keeping my fingers crossed for you!

lori

[Robertnyc]

Thanks, Lori. It is odd, isn't it? My only symptom is in both ears, equally. I'm told that having an abnormal ABR (Acoustical Brainstem Response test) means a 70%-90% chance of having an AN, but must always be followed up by an MRI. Anyone else know about ABR?

[leapyrtwins]

Hi, Robert 

While I know absolutely nothing about ARBs, I wanted to echo what Lori said.  Normal AN symptoms are anything but normal.  They seem to differ from patient to patient and usually have nothing to do with size of the AN.  Some patients with small ANs have lots of symptoms; some with large ANs have few symptoms. 

IMO the only definitive way to rule out an AN is to do the MRI with contrast.

Good luck; let us know the outcome.

Jan

[HeadCase2]

Robertnyc,
  My guess is that something else is going on rather than AN.  AN can give that ear fullness feeling, but usually on one side only.  Someone with confirmed AN tumors on both sides would be diagnosed as having NF2-- which is very rare.  It's also rare that you would have AN without hearing being affected.  Sudden or rapid hearing loss on one side is usually (but not always) the first symptom.  Have you ever had medications that affected your balance?  An MRI with contrast is the definitive test for AN. The contrast makes an AN tumor glow white on the MRI so that it stands out from surrounding structures.  So your MRI should let you know if you have AN or can rule that out.  I hope that you don't have AN.
Regards,
  Rob

[Jim Scott]

Robertnyc:

Welcome to our site and the forums. 

I have to agree with Rob ('Headcase2').  I'm not a doctor so my opinion is worth about what you're paying for it - but I suspect that whatever the source of this bilateral ear 'fullness', it isn't an acoustic neuroma.  The lack of tinnitus, balance deficits or facial abnormalities is the basis for this admittedly speculative conclusion.  Of course, I could be completely wrong.  My wife points that out for me quite often. 

I trust you don't have an acoustic neuroma and we would consider it a favor if you would return to the forum and let us know what the MRI scan shows, if anything.  'Inquiring minds want to know'.    Thanks!

Jim

[28Lisa]

lol your wife is a smart woman
and secondly i too dont know what ab ABR is

[hannie]

I dont know what an ARB is but the initial symptom i went to my GP with was 'fullness' in my ears and them feeling like they needed to pop. This was in both ears at once. I had a little hearing loss but no other AN symptoms.  I was given an MRI 'just to be safe' and the doctors were very surprised to find an AN on the left side. The doctors cant tell me why i have problems with both ears when my AN is on one side only. its not impossible that you have an AN but it is possible.

Good luck for your MRI!

Hannie

[Robertnyc]

Hi all - I had my MRI, and the results show NO AN! Hooray! But I don't want to sound too celebratory, because I have been so impressed with all of you on this site, who are living with AN. You are all so courageous and friendly, and your willingness to share your insights was the SINGLE BIGGEST COMFORT to me in these days of wondering about AN. I salute you all.

THERE IS A LESSON HERE: From all my research, an abnormal ABR (Acoustical Brainstem Response test) is considered HIGHLY EFFECTIVE in detecting an AN. Of course, it must always be followed by an MRI, which is the definitive test. But to anyone out there who gets an abnormal ABR, take heart! My abnormal ABR was entirely WRONG. The particular readings it registered (it measures "waves I-V") were nearly conclusive for a mass blocking the nerves from my ears to my brain...but no such mass exists! My doctors (I have TWO ENTs) told me to disregard the ABR results, and we are continuing our efforts to find out why my ears are full.

Since I am still suffering with my hearing, I am going to continue to check back to this site, even though I don't have an AN. I feel as if I have made some wonderful new friends here, and I want to know what happens with all of you. I can't thank you enough for your insightful comments during my hours of need.

[lori67]

That is GREAT news!  You have every right to celebrate - and we'll be celebrating along with you.  You know, we have to keep this little club or ours exclusive!!   

That must be such a relief.  I'm sorry you had to go through the stress of not knowing.  And now let's hope there is a simple fix for your ear fullness.

You are always welcome here and I'm sure we all want to know what's going on with those ears of yours, so keep us posted!

Now - go CELEBRATE!!!!  A clean MRI!!!  YAY!!!!!!!!!!

Lori

[leapyrtwins]

Robert -

it sounds a little strange to say, but I'm glad you aren't one of us 

Thanks for your lesson about abnormal ARBs - it will be very helpful for newbies.

Take care - and celebrate 

Jan

[Jim Scott]

Robert:

Thanks for sharing the good news!

Apparently my suspicions were correct - and I'm so glad they were.  I trust your doctors can l find the real cause of your hearing difficulties, soon. 

I want to thank you for your kind words regarding the ANA website, these forums and most of all, the many good folks that make them what they are.  I'm pleased to learn that you found the forums so useful and plan to return.  We'll look forward to seeing you post again. 

Jim

[Rivergirl]

It is wonderful you escaped this, I do hope your ears clear up.  I love New York!

[fbarbera]

Great news. 

[sgerrard]

Since I am still suffering with my hearing, I am going to continue to check back to this site, even though I don't have an AN. I feel as if I have made some wonderful new friends here, and I want to know what happens with all of you. I can't thank you enough for your insightful comments during my hours of need.

By all means, you are welcome to stay on. You may find that if you have some exotic condition, there isn't a web forum for it, and even if there is, it won't be as good as this one. I hope you get to the bottom of it, and am glad to hear that you don't have an AN.

Steve