Potential A.N.

[Stand]

I am a 28 year old female and have had hearing loss in my right ear for ten years, along with extreme noise in that ear.  Over the past couple of years, really loud heart beating has been pounding in that ear.  This year it has progressed so greatly that it never goes away.  I'm now very motion sick and I have dizzy episodes that makes me fall down.  I went to my ENT a couple of weeks ago hoping to get a hearing aid.  Well after the hearing test was finished, the doctor comes in and asks a few questions very slowly with a strange look on his face.  I then go in for a CT scan within a few minutes.  Afterwards he told me that I need an MRI immediately and that if I don't, it can get "Very very bad, very very fast".  I have my MRI on Monday morning.  He also told me that he thinks that I have an Acoustic Neuroma and he wants me to get the MRI not at the hospital.  There is a side building that houses an MRI machine that is stronger than the one at the hospital.  So that he can see details of what is going on.  So now basically, I'm living in fear waiting for this MRI to find out for sure if my symptoms are indeed an Acoustic Neuroma.  So here's my question, did you guys have the same symptoms??

[Tod]

Stand, let me be the first of many to welcome you and say I'm sorry you had to find us. However you are in the right place to learn about acoustic neuromas, their treatment, and the experiences of many many people who have dealt with an acoustic neuroma.

My symptoms were not similar to yours, but that is because my friend Bob the tumor was growing elsewhere and attacked the acoustic nerve somewhat later in life. However, hearing loss and balance issues are both very much associated with ANs. You may wish to request the information packet from ANA  which provides a lot of information.

Best of luck to you,

Tod

[Stand]

What were your symptoms then?

[Tod]

When I was diagnosed I had gone pretty much deaf on the left. I had no noticeable balance issues, but the suspicion was that my body had adapted over time. Immediately post-surgery my balance was not good, but it was not as bad as it might have been. In fact, my vestibular therapist (who works with a number of AN patients) said my balance deficits were really odd. By this she meant I simply wasn't typical - my body had adapted to some deficits already and the surgery simply exposed new ones.

I did not have the ringing or regular thudding pre-surgery. I simply became aware over time that I could not use a phone on the left side. At first I thought my headset was going bad. Because I am cheap, I decided to test that theory before buying a new headset and realized that the problem was my ear. Everything else seemed fine. Except that over the previous three years my fitness had deteriorated noticeably and it was becoming harder and harder to pursue things like trail running and backpacking. Whether that is related, I can't say for sure, but I suspect so.

The bulk of my tumor was very low along the brainstem, entangled with several nerves, which is why I say it affected the acoustic nerve later.

Tod

[Jim Scott]

Hi Stand - and welcome, although I'm sure you would rather not have a reason for being here.  I certainly can't blame you for that - but allow me to respond to your pertinent question.  

Your symptoms could indicate an acoustic neuroma but not absolutely, which is why your doctor wants the MRI scan.  Your symptoms, while common with AN patients, might be caused by other issues, including inner ear problems.  Although my doctor told me that my AN was "probably growing for at least 10 years", my only real symptom during that period was unilateral hearing loss, which I ignored because it was very gradual so I assumed it was age-related and adjusted to it over time.  During the six months prior to my AN diagnosis (4.5 cm) my balance became very poor, my sense of taste practically disappeared along with my appetite and 30 (unneeded) pounds and I suffered from intermittent stabbing pains in my skull at what I later learned was the site of the AN. I also had tinnitus but it was mild and I was always able to ignore it (still do).  

The MRI scan (with 'contrast' - that's important) will answer the question of whether or not you have an acoustic neuroma.  However, if you do, remember that ANs are almost always benign (non-malignant) tumors and that they are treatable.  If you are found to have an acoustic neuroma, it's size, location and growth rate will all factor in to determine your options for addressing it.  If the MRI shows you don't have an AN, your ENT will have to explore other possible causes for your symptoms.  Either way, the MRI scan is a very valuable and necessary test.  It's also painless.

Please try to remain as calm as you can and don't assume anything until you have the facts (the MRI scan report).  Even then, there are options for dealing with this kind of benign tumor and, as you probably have learned from reading the posts on these forums, most AN patients do fine.  To be candid, although sometimes there can be complications most are ultimately resolved.  

Please let us know the results of your MRI scan and know that many folks you've never met are thinking of (and praying for) you.  Try to remain positive.

Jim

[TJ]

Although it is a shock when the doctor says things we don't want to hear you have found the right place to get information.  If you do have a AN there are many different treatment options.   There is  surgery, radiation or you might be able to just watch if for awhile.  AN's are usually benign and grow at a slow rate.  Best advise is to do your homework find out which option is best for you.

Best of luck
TJ

[Stand]

Well, I appreciate responses.  I haven't been able to talk to anyone about these issues and they have been just now bothering me.  I've had little to no hearing in my right ear for ten years now and I've just grown used to it.  It's actually very soothing and helps me sleep.  I'm a mom of 3 and a foster mom and my husband is a fireman and so I hear a lot of radio traffic when he goes on fire calls.  So I roll over and lay on my "good ear" and I can't hear a thing.  My "bad ear" is on the right.  It's really "stuffed" feeling but that sensation I've grown used to and I just ignore it.  I can't hear very well and I say "huh?" if anyone is on my right side.  I have a lot of "hissing and whooshing".  I actually hear it way above my kids screaming and running around.  I also have my heart beating in that ear which is a bit bothersome.  I haven't even thought about my balance but I do have those issues too which is quite annoying.  But anyway.  Those are my main symptoms.  It hasn't been until this year that I've been overwhelmed with it.  To be honest, I'm very used to it all and it's soothing when I'm trying to sleep and my husband is on scene somewhere.  It blocks out the noise.

[leapyrtwins]

Stand -

ANs don't typically get very, very bad very, very fast.  Most are very slow growing and 99.9% of then are benign.

But, I strongly recommend an MRI with contrast (gadolinium).  It's the only definitive way to diagnose - or rule out - an Acoustic Neuroma.

Good luck,

Jan

[Stand]

Hey, Jan.  Yeah I thought that was peculiar but I think he was saying that because I told him that everything has been increasing over the years but here in the past couple of months has hit me so hard, I'm not quite sure what is going on.  That every symptom I have has increased to where it's debilitating.  His response to that was, that he was greatly concerned over the sudden increase of severity of symptoms in such a short amount of time.

[HeadCase2]

Hello Stand,
  I agree with Jan that AN is usually, but not always, slow growing.  The affects of an AN can come on slowly and be suddenly noticed, or they can come on suddenly.   I hope your MRI with contrast turns out to be negative for AN. 
Regards,
  Rob

[Stand]

I agree and hope that everything is just fine.  I'm remaining optimistic.  I've had this slow progression of "deafness" in my right ear for ten years now so it's just a part of my life.  Being only 28 though it's concerning.  Especially when I can't hear details of what my kids are saying.  It would be nice to know for sure what is going on.  Even if it's AN.  Because at least I can move towards fixing what is wrong.  Even though it would be permenant.

[CHD63]

Hi Stand ......

Just now checking in to the forum today ...... want to add my welcome to the group.  You have already had reassurance from the others.  However, hang tight (actually stay as relaxed as you can) until you have that MRI (make sure it is with contrast).  The unknown is always harder to deal with, until you find out what is causing your symptoms.  Keep in mind that anxiety and stress will make all symptoms suddenly worse.

Many prayers.  Let us know how you are doing.

Clarice

[leapyrtwins]

Rapid growth of ANs does happen; happened to me    When I was diagnosed mine was 1.5 cms and it was almost 3 cms approximately 6 weeks later when it was surgically removed. 

Increased symptoms may or may not mean an AN is growing.  There are many cases on the Forum where very small ANs caused very large symptoms and vice verse.  There is no rhyme or reason for this, other than possibly location of the AN.

Unilateral hearing loss - while sometimes one of the symptoms of ANs - can also be caused by many things and at times the loss can be unexplained.  I know lots of people who lost half their hearing for no reason whatsoever.  Many of them opted for BAHAs, many decided to just live with it.

If you do have an AN, you should contact the ANA and ask for their informational brochures.  They are free for the asking and are a great resource.

Jan

[moe]

Hi Stand,
Just a welcome to this wonderful forum. We are here to help you with questions, concerns, venting,joking too, etc......
Let us know what the MRI shows. You may or may not have an AN, but the symptoms do indicate so.
Your doctor was a bit over reactive, I think. They should learn patient etiquette, and not say words like very very bad very very fast!!!!! Geesh, where is the bedside manner.
Now you get to worry about "what ifs" but like everyone else has mentioned, it is a slow growing, benign tumor, and most likely if you've had it this long, you can have it a little longer.
You sound like a very busy lady. Try to stay calm,  when you find the answer, then we'll talk more 
Maureen

[Stand]

I wanted to give you guys an update on this situation.  I ended up going to the ER today because I've been falling down.  They did a CAT scan and told me that I have a white spot on the left side of my brain but they didn't have an answer to what it was.  My MRI is scheduled for Monday.  A friend of ours is an ENT doctor and she said that she's going to try to bump up my MRI for tomorrow or at least this week.